Anyone Can Get IC


Interstitial cystitis
(IC) can affect anyone. Women, men, and children of any age or race can develop IC.

The findings of the Boston Area Community Health (BACH) study estimated the prevalence of IC and other urological symptoms by age group, gender, and race and ethnicity. They concluded that lower urinary symptoms and pelvic pain are common in all groups. Researchers concluded that about 25% of the men and women of all ages had symptoms. They also found no differences in prevalence based on race and ethnicity.

Voices of Hope Blog

Stories of hope, encouragement, and success from the IC community

Want to submit your story for the blog? Please be sure to send us a photo when submitting your story.





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My Faith Helped Me Through
12/11/2014

My name is Sara and I live in North Carolina. I am a 27-year-old single woman with Down syndrome. More than two years ago I was diagnosed with IC and pelvic floor dysfunction pain after medically ruling out any other potential causes of the pain in my bowel, bladder, and lower back areas. The pain was worse when I urinated, had bowel movements, danced, exercised, and consumed most food or drinks. I felt the need to urinate very frequently which not only caused pain but also disrupted my school and work schedules. Eventually my diet consisted of water, brown rice, flour tortillas, white fish, oatmeal creme cookies, and vanilla ice cream because all other foods and drinks triggered great pain.

Looking for relief I tried every treatment available to me, including surgery, distentions, instillations, oral medications, aloe vera capsules, physical therapy exercises and self-massage – all with no real improvement. When I eventually tried PainShield MD, its impact was immediately felt. Even though the pain was still present to varying degrees every day, over the course of about nine months my pain became much more tolerable until about a month ago when it vanished completely!

I typically wore the PainShield on my lower-front abdominal area, or wherever I felt the pain the most, for 13-15 hours per day, every day. However, I no longer have to wear the PainShield and am totally free of pain. On a daily basis I am adding more and more foods back to my diet without incurring any pain and so far everything I eat or drink is working well for me.

There were so many generous people who prayed for me to be relieved of this pain, and my constant faith helped me immensely through that difficult time. I do not know to what extent the ultrasound therapy contributed to my healing but I do know that it gave me great relief while I had the pain and would definitely recommend its use for IC and pelvic floor dysfunction pain.

Sara

We Never Know What Tomorrow Brings
12/11/2014

My name is Sharon Hicks. I am a 54-year-old female who was diagnosed with IC about five years ago, but I've had it for about ten years. In those ten years, I have been seen by eight different urologists and two general practitioners. At the beginning of this journey I was diagnosed with kidney stones and my doctors told me that was my problem. Working together, we got rid of the stones but the bladder pain and blood that persisted and were horrible. Searching for an answer, I was passed from one doctor to another. Finally, after the fifth urologist I was diagnosed with IC and endured a gauntlet of procedures. Nothing seemed to help, but at least it did have a name - IC!

One of the first steps I was advised to take after my IC diagnosis was to change my diet. I had already learned to avoid certain foods, but that wasn’t enough - the pain continued. Then I was told that I was depressed and "maybe your husband is having an affair," by my urologist, so the next course was to try counseling to deal with life because emotional stress affects IC. I'd been married for about thirty years at that time and had a great marriage, so that certainly wasn’t the case, but I did as I was told and went to see a therapist. After six months of treatment the psychologist told me to find a new urologist (I never once said a negative remark against my husband)! So I mentally went through the checklist: diet modification – check, therapy – check, no perfumes or soaps – check. Now what?

In March 2010 I was diagnosed terminal. I had lost a lot of weight and was down to skin and bones. My gastroenterologists and internists couldn't figure out why I wasn’t able to keep food down. I was starving to death and fighting the IC at the same time. The doctors did exploratory surgery and still couldn't find anything, so I was put on a feeding tube and even that didn't work. Then finally my doctor referred me to an endocrinologist and with one simple blood test the mystery was solved. The illusive culprit? Celiac! It just goes to show we never know what our future holds.

This disease affects many women and men and usually changes their lives. Take me, for example. IC caused me to lose my career and I now receive Social Security Disability. Among the lessons I've learned is that we never know what tomorrow brings. With that in mind, I take better care of myself and don't over-extend myself and stress when others need me. Most of all, I don't have to apologize for doing what I need to do to take care of myself. My pain management doctor and I have built a great relationship, I research on my own every day, and I keep writing and encouraging the medical field to show more compassion for IC patients. I feel very optimistic that there will be a cure - it's just a matter of when.

We have a choice. Give up or give all. We have to enjoy every day - IC or no IC.

Best wishes for a pain free life!
Sharon Hicks

My Nine Year Old Daughter is Living IC Symptom Free
12/11/2014

My eight-year-old daughter developed symptoms of IC last year within a month after having dental sealants placed on her teeth to help prevent cavities. I knew the symptoms could only be IC, but the treatment she received at her pediatric urology group was deficient, and they disagreed. The doctors felt she was anxious and needed Zoloft and to consult a psychiatrist. Her behavior specialist knew better and diagnosed her with a medical condition after 30 minutes!

Honestly, the story is too painful to recount in all its horrible detail. Thanks to copious quantities of both research and prayer, we found that she is allergic to the sealant epoxy. Learning that, the dentist promptly removed the tooth sealants and she was symptom-free within three weeks! My now nine-year-old daughter has resumed normal activity and is living IC free.

I hope this story can help someone else who is suffering. No one should have to sleep on the bathroom floor next to their child on the toilet for six months! I now understand the torment IC inflicts on its sufferers!

God bless!

Sheri

There’s No Better Advocate Than Yourself
12/11/2014

My name is Marta and I suffered with interstitial cystitis and fibromyalgia and was on bed rest for years. After so much time spent in misery, I decided to do a little research about pain relief. The decision to be proactive and begin taking control led me to the Medtronic pain pump. I went in to see my doctor as soon as possible, and much to my pleasure, was told I was an excellent candidate for using the pump. I’ve now been on the pump 13 years and it has given me so much relief. I was actually able to go back to work and live a normal life. It just goes to show – when it comes to your care, there’s no better advocate than yourself.

Marta

I Know My Limitations
12/11/2014

Twenty five years of IC has caused a lot of life changes. The most important lesson I've learned is that IC isn't the most important thing in my life. When I was first told I had IC, like everyone else, I was relieved and overwhelmed at the same time. God put me in a place where I had Dr. Robert Evans to guide and work with me. He's a knowledgeable and kind doctor, who is honest and willing to allow me to assist with my care. He encourages my husband to take part in my visits and care as well, because he believes that this disease affects the whole family, not just the patient. Over the years I've learned to control the pain and how to live through the pain. I've adjusted to the discomfort and the way it makes me feel all the time so as to be able to function reasonably well on a daily basis while tuning out the pain that is constantly blazing. When it feels like concrete is being poured into my pelvis and then being pulled out, I know to “parallel park” on the couch for a few hours after taking the medication that calms the pain so I’m able to sleep through the worst part of it. Taking the time necessary to recuperate is critical. To get over the worst of the flares I’ll often drink hot tea, use a hot rag or heating pad and lay in a warm, dark room to rest as long as needed. Nowadays, it is understood by most people in my life that I may have to skip much of what I had planned to do that day.

Almost no one appreciates the true extent of how IC has limited my life. IC and all the other chronic pain conditions that come with it have restricted what I’ve been able to accomplish. However, the people in my life who most matter truly get it, and that's what’s important. At this point, even if they didn't I wouldn't care because I know what it is and how to deal with my limitations. I feel quite fortunate that I am able to do as much as I can and have found many things I can do to help other people even while I spend time stuck on the couch at home. God had a purpose, He's let me see what it was, and IC was just the way to make sure I had time to fulfill it.

Deborah Gregson

Diet Made Me Pain Free
11/20/2014

I’m Laura and I live in Christchurch, New Zealand. I am a very proud, 29-year-old wife and mother who was diagnosed with severe endometriosis at age 13 following three exploratory surgeries. Since then, I have had an additional 15 surgeries which have helped to partially manage my symptoms. As if that all wasn’t bad enough, I was subsequently diagnosed with Adenomyosis and Polycystic Ovary Syndrome (PCOS). To make matters worse, I was recently scheduled to have a full hysterectomy due to constant, unmanageable daily pain. Because I did not wish to undergo such a drastic measure, I requested a second opinion. I was devastated by the thought of being unable to have more children. My life changed drastically when, soon after, I received a diagnosis of Interstitial Cystitis. I quickly educated myself about this condition, and once I made changes in my diet, relief came almost immediately! I went from being in almost constant pain to being nearly pain-free in just a few days!

Now, four months later, I have a massive reduction in menstrual pain and no daily pain (when I stick to my diet). In addition, my pelvis is no longer inflamed, which means I do not need daily pain medication. This positively affects many areas of my life! What’s more, my hysterectomy has been cancelled and I am looking forward to extending our family in our own time. I no longer take days and weeks off from work and I am a much happier person!

Laura Hall

Blessed to Have IC Under Control
11/20/2014

My name is Melissa and I am 38 years old. I started having bladder pain at the age of seven. Every time I went to the doctor for a urine culture, the results would always come back negative for infection. At the age of eight, I had surgery to “repair” my bladder and alleviate the constant urge to urinate, pain and incontinence. Still, nothing helped. Years of drinking cranberry juice and taking needless antibiotic treatments finally came to an end when my OB/GYN referred me to a urologist. When I first heard the diagnosis “Interstitial Cystitis”, I was skeptical. I immediately went home and researched it on the internet to see what the heck this meant for me. I was amazed and stunned! Most of all, though, I was relieved! I now knew why I hurt and why antibiotics never worked. My diagnosis of IC came three years ago and I’m now on daily Hydroxyzine and Amitriptyline. In addition, I receive Toradol injections when I’m having a severe flare. This condition affects almost every aspect of my daily life, but I am blessed to finally have it under control. I’m also thankful for a loving family who supports me.

Melissa

Take a Chance...You Never Know
10/23/2014

After reading all of the Voices of Hope stories, I decided to add mine.

As with many stories, my IC journey began with what I thought was a urinary tract infection. When I think back on it, I always remember having to urinate much more frequently than most people. In September 2010, this particular supposed UTI was not fixable. A sample of my urine showed no bacteria, and the three subsequent courses of antibiotics did little except make me nauseous.

After that episode, I was referred to a urologist who performed a cystoscopy. In the middle of the cystoscopy the urologist commented that my bladder was “abnormal.” The results of the cystoscopy were not encouraging. The urologist informed me my bladder was very inflamed and scarier yet, that he had found a tumor. I had been a smoker, but had quit thirty years before. Nonetheless, he felt the tumor was most likely cancerous as there is a strong connection between smoking and bladder cancer.

A few days later I had the tumor removed and, much to my doctor’s amazement and my joy, it was not cancerous, but rather a benign tumor called a von Brunn’s nest. At that point the urologist thought that it was possible the tumor had been causing my symptoms, but unfortunately, it turned out to be just a red herring, as my symptoms of frequent urination (every 20 minutes), bladder and urethral pain continued long after the tumor was removed.

Modifying my diet helped by helping me discover what foods would trigger pain, but it did not help to lessen frequency. Finally - a year after the surgery - I was diagnosed with IC (primarily by exclusion and the abnormal bladder cystoscopy results). After much research and discussion with my doctor, I decided to try Elmiron. To my dismay, most of the information I found while researching was negative. I am rather sensitive to medications, including antibiotics, so I grew considerably worried in light of all the possible side effects, but felt if it worked, some hair loss was preferable to the life I was then leading. I had been cautioned that there was a good possibility Elmiron would not work, but once again, seemingly against the odds, Elmiron did work and I can now sleep through the night and normally go 2 to 2.5 hours without needing the bathroom. Woo-hoo! I have had no side effects from Elmiron and this year, with the urologist’s blessing, decreased my dose from 400 mgs per day (200mg twice a day) to 300 mgs per day. Before Elmiron my life was ruled by the bathroom: if there was going to be a bathroom, where there was going to be a bathroom, when there would be a bathroom. I realize that Elmiron has not cured my IC (although I have tricked myself into believing it has) and that I will most likely have to stay on this drug for the rest of my life, but I at least now have a normal life, and am 100% out of pain as well! If you haven’t tried a treatment for fear of side effects, put those aside and take a chance. You never know.

Linda Giglio, 58

IC Diet Helped Me!
8/14/2014

My name is Theresa and I am 58 years old. Four months ago I woke up to what I thought was a routine UTI, so I promptly went to my primary care physician for antibiotics. When those failed to relieve my symptoms, I went to the emergency room and was prescribed a different antibiotic.That round appeared to help, but after completing the course of treatment the symptoms returned. My primary care physician recommended I try a third round as it seemed the last dose had worked. For three days I tried, and was made more miserable (this all occurred over a period of three weeks). The only other health issues I had going on at that time were extreme seasonal allergies. I had heard of IC, and during this time became absolutely certain this was my condition because all three times my urine samples had come back negative for infection. Because I was on either AZO/Pyridium or antibiotic at the time, the doctor suspected the results were skewed. However, in my search to find out what was wrong with me I realized that all my symptoms matched those of IC.

To get to the bottom of the mystery, my primary care physician referred me to a urologist. He firmly believed that I could not just wake up one morning and suddenly have IC. Nevertheless, he performed a cystoscopy with distention which, to his expectation, showed a normal bladder. To rule out other concerns, he then recommended a CT scan, and informed me that diagnosing IC is a process of elimination, meaning that if nothing else was noticeably wrong, IC was the likely culprit. That said, I have never officially been diagnosed with IC, but have proceeded with the IC diet suggestions as if that were the case.

While I had no real burning, I did have pain comparable to mild-to-major menstrual cramps with pain from the top of my bladder to the very end of my urethra. At the onset of my trials I was awakened in the early hours with very severe bladder spasms that made me want to crawl out of my skin and urinate. This feeling would usually linger 2-3 hours and lasted for a week.

Next I turned to diet modification and decided to experiment with the recommended food and elimination diet suggested by ICA and kept a food and void log including the amount of liquids and the time between bathroom breaks. In an attempt to “train” my bladder, I consciously made myself wait a little longer between visits to the bathroom to increase my bladder volume. After changing my diet and eating a fairly bland meal at dinner I saw a significant improvement in my ability to sleep and a drop in the need to urinate from four to two times a night and no flares. After initial elimination, I have added most foods back into my diet with the exception of caffeine, chocolate, tomato products, highly acidic, fast/processed, and extremely spicy food, and I attempt to stay organic when possible.

Additionally, I started going to a chiropractor and acupuncturist. Also, I have added marshmallow root tea, I drink slippery elm, which promotes healthy mucous membranes, and rooibos tea to my diet. Rooibos tea in naturally caffeine free, is a powerful antioxidant with anti-inflammatory properties, improves circulation, relieves stomach complaints, and encourages restful sleep, plus many other benefits. I suggest researching these natural products to see if they are right for you.

Staying hydrated is important, so I drink plenty of fluids - at least 64 ounces every day. To avoid having to get up too frequently during the night, I usually stop consuming fluids about two hours before bedtime. On average, I usually go about 2.5-5 hours between bathroom visits during the day and two visits per night, whereas before treatment, I was urinating fifteen times per day and a minimum of four times per night.

My story began on April 4, 2014. Today I feel ninety percent normal and am relatively symptom free. I still feel twinges in my bladder that were not there before, but I can live normally and not worry where the next rest room is. I continue to watch what I eat and see a chiropractor, exercise and do some yoga too, but haven’t needed acupuncture recently. Considering what some people have gone through and continue to deal with, my four month experience might seem like a walk in the park, but when you are in pain, 24 hours can feel like a lifetime.

Without the encouragement of my husband, the ICA website, and ICA Online Support Community I would not have known what to do or where to turn. My healthier condition is a direct result of your stories of hope and experience. What’s more, my husband and I were able to travel to Italy in June - a trip we had planned for over a year. The IC diet helped me get my bladder under control and feel confident that I would be able to enjoy much of the food available on our vacation. Not all Italian food is made with tomatoes!

Theresa

Don’t Tell Me What I Can’t Do
4/10/2014

In 1999, when I was 16 years old, I was diagnosed with interstitial cystitis. I suffered for two years from the onset of symptoms to diagnosis. As a little girl, I had frequent bouts with bladder infections, and as I got older in my teenage years, it got worse. I was constantly in and out of hospitals.

At 15, I had a dermoid cyst on my ovary and had surgery to have it removed. After that, I was still in a lot of pain, so my gynecologist directed me to see another specialist because she suspected I had endometriosis. The new doctor advised me to have a cystoscopy because he supposed I had IC. The cystoscopy revealed that I had the worst case of IC the doctor had ever seen in someone so young. In addition to my diagnosis of both IC and endometriosis, I was also given the devastating news that I would likely never be able to have children.

IC caused me to miss a great deal of high school and many of the usual teenager experiences. For example, I was discharged from the hospital just a day before my senior prom. On the night I graduated from high school, I was in so much pain I could not go out with my friends to celebrate. After high school, I attempted to attend college, but unfortunately, my IC prevented me from finishing.

Treatment was not working, so my doctor and I agreed to try DMSO (Dimethyl sulfoxide). Finally I began to feel much better, and fortunately, that trend has continued. That is not to say that I do not continue to struggle at times. Like most IC patients, I have good days and bad days. There are still times when I am unable to get out of bed or walk, and I still go to the restroom often at night and at work. However, I'm now in my 30s and my two beautiful daughters are proof that you do not have to let IC control your life.

Courtnee

Healing Through Chronic Pain
3/4/2014

In the summer of 2007, I was working as a physical therapist/university instructor when IC/PBS reared up and pulled me out of my life. My main symptoms were bladder pain/inflammation, pelvic floor dysfunction, and a nervous system that seemed to be set in overdrive. In the beginning, the pain was intense and debilitating. Here is an excerpt from my journal at that time:

“If this is my life, how can I possibly get through it? How many more years until the kids are raised, and how can I make it? If no one loved me, I could check out, but people are counting on me. I’m trying to be positive, trying to find meaning, trying to be grateful. I’m tired. In the mirror, my face looks exhausted, lined, tear-stained, and pained. I feel like I’m trapped in my own personal hell."

At first I was passive and scared, but over the first six months I gradually started to take control of my healing. For over five years, I worked diligently to get better, and my list of treatments fills one-and-a-half pages of single-spaced text! Finding the right combination of treatments was often discouraging and frustrating, but with persistence, I found a multi-treatment approach that worked for me.

Almost everyone asks me what one thing “cured” my condition. Sometimes, they look disappointed when I tell them that, in my case, getting better required a combination of methods from Western medicine, Eastern medicine, and alternative treatments that addressed the bladder pain, the pelvic floor muscle spasms and the neurological ramp-up. For me, there was no quick fix, and the healing happened gradually over time at all levels of my being.

It took me years to accept that there may be an emotional component to my illness. Finally, about two years into my illness, I decided to look within, and over the years I uncovered emotions, beliefs and suppressed trauma that were contributing to the ramp up of my nervous system and my pain. When this information came into my conscious awareness, I could choose to work through things and change. Through this process, my mind and body calmed down, and both my internal and external life began to change for the better.

The first book I read when the pain began was Love and Survival, by the cardiologist Dr. Dean Ornish. One passage jumped out at me then and seems to summarize my experience even today:

“Curing is when the physical disease gets measurably better. Healing is a process of becoming whole. Even the words heal, whole, and holy come from the same root. . . . In the process of healing, you reach a place of wholeness and deep inner peace from which you can deal with illness with much less fear and suffering and much greater clarity and compassion. While curing is wonderful when it occurs, healing is often more meaningful because it takes you to a place of greater freedom from suffering.”

During my journey with pain, I experienced both curing and healing. The physical disease got better, and I am currently pain-free on most days without medications. But more important, this rough road healed me. Now, I am often joyful—for no real reason and for every real reason.

Don’t get me wrong—this was the most difficult challenge of my life so far—and I needed help in that healing process. But comparing my life and the state of my body, mind, and spirit before my illness to now, I would never want to go back. The journey was rocky, but the rewards were unexpected and amazing.

Mary Ruth Velicki’s full story can be found in the memoir: Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. (A portion of the Amazon sales made through ICA’s Reading List support ICA’s work in research, education, and patient advocacy.)

Mary Ruth Velicki

Never Lose Hope
3/4/2014

My name is Jackie Powe. I am a 25-year-old IC patient. When I was about 18, I began to notice a minor increase in my frequency of urination. About a year later it got a bit worse. I went to a doctor and told him that I felt I was urinating more than normal, and therefore could not consume a similar number of drinks as others. At that point in my life, I was still interested in going out and having drinks with friends. I quickly realized that this was no longer an option, unless I stayed in the bathroom all night. Still being so young, when the doctor advised me not to worry, I went about my life, continuing to deal with the frequency. By then, I had begun to feel it was acceptable to not drink water or enjoy a drink with my friends.

When I was 24, things took a turn for the worse and I realized that my condition was no longer tolerable and something had to change. Shortly after beginning an accelerated bachelor’s degree program in September, my symptoms flew off the deep end. My concerned professors and classmates repeatedly asked me what was wrong. The frequency of my urination varied anywhere between 15 to 40 times a day, and at least four times each night, making a good night’s sleep impossible. By that time, I was also suffering from bladder pain. I was very confused and thought I was having digestive issues - and I was - but what I was feeling was the unmistakable sensation of bladder pain. My life was completely focused on what was happening to me and I could no longer remain positive.

I sought an explanation, but finding the help I needed was not easy. I consulted many doctors before I found a doctor who could correctly diagnose and treatment me. The first three doctors I conferred with ran numerous tests, but with inconclusive results, they gave up quickly. The next doctor actually diagnosed me with IC, but refused to treat me. To make matters worse, he told me I had the worst IC he had ever seen, and sent me to yet another urologist. My heart was broken.

Now, over a year later, I am in a completely different place. Despite still having IC, along with fibromyalgia, vestibulitis, pelvic floor dysfunction, and IBS - everything that goes along with IC - I now have a positive attitude. This is a life-changer. In addition, I also have been able to find some relief in treatment, which includes watching my diet, seeing a physical therapist and taking medication. I was convinced that IC was going to take over my life forever, but I was wrong. I now know that IC will never take over my life and I have full control.

I understand how easy it is to completely give up hope. For five years I struggled through IC with no answers. I was an 18-year-old girl who was completely lost. Thoughts crossed my mind daily about my future. When I think about my future now, I think of positive ways to combat my pain and to live.

Never lose hope. Even if you are struggling with pain, or struggling to find answers as to what is going on, keep your head up. Yes, there are days or weeks where my treatment does not help, but I continue to thrive on my positive attitude and my constant hope. Without hope, I am just living with a life-changing disease. With hope, I am living with a life-changing disease, but I do not let it rule my life.

Jackie Powe

Jim’s Journey: Finding Light at the End of the Tunnel
11/14/2013

My name is Jim, and I’m 68 years old. I have lived with interstitial cystitis (IC) since 2008. After 18 months of living with severe pain, going to the restroom 48 times in 24 hours, and seeing three urologists, I was finally diagnosed. It took three months of testing and several very painful procedures to confirm that I had IC. My urologist didn’t treat patients with IC, so I found one who did at Kansas University Medical Center. He started me on pentosan polysulfate sodium and several other medications that helped the pain a little. I was still urinating a lot, and it was making life miserable. When I went out, all I could think about was where the closest restroom was. I would have attacks where I would have to urinate every 10 minutes for up to two hours.

I was sent to a physical therapist to help with my severe pelvic pain. She did a pain test, which has normal scores between 4 and 11. My score came in at 125. I was in so much pain I couldn’t continue the therapy.

Then, my wife found the ICHelp website. I started the IC diet listed on the website and found a lot of pain relief, but I was still having periods of severe pain. I told my wife that I thought I had some food allergies.

In 2011, I found an allergist who treats IC patients. He ran a battery of allergy tests and found that my body was totally out of kilter. My yeast level was at the high end of the chart, which was from several years of taking antibiotics for what I thought were bladder infections. The test showed I was allergic to eggs, carrots, cheese, crab, lemons, cow’s milk, wheat, barley, cauliflower, garlic, lettuce, peanuts, shrimp, yeast, blueberries, celery, coffee, gluten, lobster, pepper, sunflower, broccoli, corn, grapes, malt, rye, black tea, yogurt, mushrooms, brown rice and pork. Now, try to make a meal without any of those items! My wife, who helped and supported me through all of this, set out to find meals I could eat. I did a strict elimination diet for six months, lost 35 pounds and had no pain. My body was back to normal. I was then able to try adding items one at a time back into my diet. I’m still very limited on what I can eat and drink. Pepper will terrorize my bladder for a day and a half. I do use Prelief 30 minutes before and sometimes after I eat something that may bother me.

Although I had started managing my pain, I still had to go to the restroom 24 times in 24 hours. I was able to train myself to go back to sleep after getting up seven to eight times during the night. I asked my doctor if there was anything he could do to get my frequency down. He gave me several options, one of which was Botox shots into my bladder. He informed me that Botox would take one to three months to start working and would last nine to twelve months.

Last May, we decided this was the best option and did the procedure. It took three and a half months to work. I now can wait two and a half to three hours before I have to urinate, and I don’t have that extreme feeling of having to urinate. Life is so much better. My wife and I are starting to travel again. I try to avoid more than a half hour of strenuous work, which will set off an attack.

If you are following the IC diet and still having pain, I highly recommend going to an allergist. The diet was hard to follow, but, after being in severe pain for over four years and getting almost total pain relief, it was well worth it. I also recommend that you have to keep doing research and trying different therapies. Sometimes the pain can become depressing, but you have to keep a good attitude. After a long struggle, I found light at the end of the tunnel. Good luck on finding a pain free life.

Jim

ICHope - Feeling More Positive and More in Control
11/7/2013

The following post features ICA volunteer and IC patient Catherine Horine as she chronicles her journey using ICA’s newest online program, ICHope Self Management Module. You can read more about Catherine in her personal blog, Interstitial Cystitis: Catherine's Journey.

Let ICA know whether you have tried ICHope by taking a short survey. The survey is confidential and should take less than one minute to complete.


Assessment and Reflection

It’s been 30 days and as the ICHope Module recommends, I went back online to re-take the assessment portion of the Module.

As I completed the questions in the first 10 percent of the assessment, I was told that based on my answers, my pain level is in the severe range—the same as it was 30 days ago. The Module recommends that I talk with my doctor about my progress, which I am actually doing. I feel good that, even though there has been no change in pain level, I am actively working on this with my doctor as the Module suggests. The Module helps with three important areas when it comes to helping us “manage our pain:”

  1. Finding and working with a healthcare provider who is committed to helping you manage your IC pain.
  2. Doing what you can do to manage your pain.
  3. Staying hopeful and empowered.

For me, I feel I already have #1 worked out. My doctor is committed to helping me and is always looking for ways to manage my pain. He has never given up on me, where I believe other doctors might have a long time ago. This is a never ending challenge for a patient like me who doesn’t respond to pain management therapies, but my doctor and I always discuss this at every appointment. It is ever present, and I am comfortable with where we are in this process.

However, #2 and #3 are areas where I feel the Module gives me, personally, the most benefit. I am doing all I can to work on improving my pain, including being actively engaged in the process as recommended. The Module gives me key tips to help me find strategies to cope and remain positive. Proceeding through the assessment for the second time reinforces the things I know I need to work on and keeps the strategies in the forefront of my thinking.

These are all strategies I have learned over the years and have talked about in therapy and written about in my Blog. However, to see them in this Module really did two things for me. It made me realize that these are scientifically proven techniques that can really make a difference in how I manage and cope with my IC pain and also helped me see I am heading down the right path.

By going through the assessment a second time, I discovered that I have made progress in certain areas of self management and will continue using the tools and working toward making necessary changes. In other areas, I found out that I am now in the Maintenance stage, which means I am doing what I need to do in order to manage and control my IC. Repeating the assessment gives you an opportunity to see where you are in the process of self management and get suggestions about finding alternatives if a particular strategy isn’t working. If you are stuck in a certain stage and need to move on to the next, the Module gives you the tools to create an action plan.

I loved the section at the end of the assessment where you can evaluate your self-image. This is something that has changed for me over the course of my IC journey. I started therapy because I was feeling powerless, defeated, and negative—all things many of us go through. By using the Module, I realized that I am moving the needle on these feelings. I am more positive and more in control of my care—I no longer feel hopeless. To be able to actually see that I have made progress in the area of self-image is really empowering.

I hope everyone is working with the ICHope Self Management Module. There is so much to be learned about yourself, where you are emotionally in dealing with your IC pain, and ways to make changes!

Catherine Horine, IL

Catherine’s Journey in Hope Continues
10/22/2013

The following post features ICA volunteer and IC patient Catherine Horine as she chronicles her journey using ICA’s newest online program, ICHope Self Management Module. Learn more about the program at www.ichelp.org/ICHope. Also, you can read more about Catherine in her personal blog, Interstitial Cystitis: Catherine's Journey.


Shortly after using the Module for the first time, I decided to go back and check out a few of the many tools available in the program. What I chose to focus on today was to re-watch the video of Dr. Deborah A. Levesque that was presented at the ICA Patient Forum in Philadelphia back in June. I wanted to re-watch the video and listen to her talk about what people with IC can do to help ourselves.

Then, I read the handouts from Dr. Levesque’s presentation. The handouts contain questions to help you figure out what steps you can take to manage your care, whether you are ready to take action to improve the quality of your care, and how you deal with having IC.

I like this tool. It really made me stop and think about what I do on a daily basis. Some of the steps I am already actively doing. Some I have worked on in therapy; however, ICHope helps reinforce my need to focus on the ones I am not focusing on enough. I like being reminded, by using a tool like this, of what I can control. Having specific things that I can do to take control, to help me manage my emotions, and to handle problems that arise really helps me feel like I am NOT helpless. I can do things to help myself.

These strategies and tools may not be a magic bullet, but whatever I can find to help me improve the quality of my life I am all for trying. I find using these tools has been a real eye opener and is something that I am going to share with my therapist next week at my appointment. The Module contains tools and strategies that are so similar to things I work on in therapy that this just helps reinforce those sessions.

Here are links to ICHope and the video and handouts that I have mentioned. If you haven’t checked out these resources yet, I encourage you to do so. ICHope is a great tool that can help each of us take control of our own health!

ICHope

ICA Patient Forum Video Featuring Dr. Levesque

Handouts by Dr. Levesque 

If You Have IC, Have Hope!
10/10/2013

My name is Elizabeth Bingenheimer, and I have had IC since February 2012. I wasn't diagnosed until April, but symptoms started then. Like many of you, I have questioned my reasoning for having IC. What did I do wrong? Did I earn this punishment? How am I supposed to live like this forever? I felt lost and confused in the beginning. And then I started reading the Bible, trying to find a greater answer from God and connecting with him and Jesus. It took me about 15 months to realize God did not give this to me. He is helping me, holding me in his hands, always there to support me in my pain. There has never been a day where he didn't make me strong enough to survive the pain.

Before I reached out to God I was in complete heartache that no one knew what IC was; no one I talked to had the slightest idea. You could try to explain it, but it seemed as if it went through one ear and out the other because we don't look like we are sick. So in October, November, and December of 2012, I started emailing celebrities, TV shows, and news shows asking them to help raise IC awareness. I became very discouraged when one celebrity blocked me from his website because I was writing so much; so I stopped.

Then, on September 17th, 2013, I received a call from a producer on the TV show The Doctors asking if I could do a phone interview. That phone interview turned into an appointment with Dr. Jennifer Berman from the show. They recorded my office visit and physical examination with her. After that, on September 27th, I had the opportunity to go on the show and raise IC awareness with Dr. Berman and Dr. Travis, one of the hosts of the show. This whole experience reminded me that I'm going to be okay. It let me know that God is taking care of me and answered my prayers for help. He let me be my voice and the voice for so many with. IC is very debilitating and painful. I am now hopeful that my friends and family, as well as other IC patients’ friends and family, will have a better idea of what we are suffering from.

I am only 32, so I know my IC journey has just begun. However, to know that I have accomplished so much in so little time makes me very proud. Instead of letting IC be a negative in my life, it has become a very positive thing for so many with IC. I have created an IC support page, www.facebook.com/mommyland.ic; it has over 140 followers.

If you have IC, have hope! There is always room for "hope", and this is what Dr. Berman and YouTuber Holly Riddel truly have taught me. I encourage everyone to watch Holly Riddel on YouTube where she explains her movement, "Love Is My Intention." She has given me the glasses to look through and see "hope."

Let’s all support Elizabeth by tuning in to her feature on The Doctors on Monday, October 14th! Go to the show’s website to get the local listings.

Elizabeth Bingenheimer

Catherine’s Journey in Hope
10/8/2013

The following post features ICA volunteer and IC patient Catherine Horine as she chronicles her journey using ICA’s newest online program, ICHope Self Management Module. Learn more about the program at www.ichelp.org/ICHope. Also, you can read more about Catherine in her personal blog, Interstitial Cystitis: Catherine's Journey.


catherine horineI started the new ICHope Self Management Module. It begins with some survey questions so that the Module can understand more about where each of us is in our IC, both physically and emotionally. It asks us to describe our symptoms and any overlapping conditions we may have so that the Module can understand the state of our condition.

After that, we are asked a series of questions to determine where we are in the process of dealing with our IC and its impact on our lives.

I really like this tool. As you explore the many pieces of the Module, it really takes you in many different directions. In the Personal Activity Center, there is a section that will help you get organized and develop questions you want to go over with your doctor to help you manage your pain and your care. You can actually type your plan right in the Module. I find having things written down before going to see my doctor is something that is really helpful. It keeps me on track in my appointment so I don’t forget to ask something important. It’s so easy to get off track or off topic at your appointment and it’s so important that we maximize our time with our doctors. So I really like this piece of the Module.

There’s a section on Using Self-Care Strategies and another section on Staying Hopeful and Feeling Empowered. I really like these tools as well. I know many of us, myself included, often feel lost and don’t know how to stay hopeful. This is a tool that gives you guidance and real suggestions on what we can do OURSELVES to stay positive, hopeful, and even more important, empowered!

The section on Using Self-Care strategies is also excellent. Sometimes, if we just stop, and go through a process like this, we can find inspiration and ideas on things we can do to help ourselves. Whenever I feel like there is something I can do on my own to help myself without having to go to the doctor, I feel really empowered and that I have more control over my IC.

This tool can help you figure out where you are in the process of coping with your IC and offer real tangible suggestions and an Action Plan you can put into use to help you take control of your care, help you work better with your doctor and find ways of coping emotionally with your IC and pain.

I completed the Module and when you finish, the idea is to continue to use, edit, and actively work with the tools provided over the course of several months. So I am supposed to work on the suggestion the Module gave me based on my answers and go back in 30 days and do it again to see if I am progressing and if, by using these tools, I am improving in my personal approach to managing my IC. Then, I do it again 30 days after that.

At any time after going through the Module the first time, we are encouraged to really use the tools provided. There is Pain Tracker where you can track your pain and other tools you can use. This is meant to be an inter-active tool that is used frequently. Don’t just go through the Module once and leave. Take the time to explore all the helpful sections in the Personal Activity Center.

This is a tool we can use to help us manage our own care and how we cope with our pain. I like things like this and have often written on my Blog about using various things like meditation, music, yoga, etc. to help manage my pain.

Doing activities like those and using this great new Module provided by the ICA can help each of us find ways of developing a plan to actively help ourselves. Often, having a plan and figuring out how you are feeling about where you are with your IC can make a huge difference in how we feel. I know it does for me. These are the type of things I also work on with my psychologist, so this tool can be an adjunct for me to do what I talk about with my therapist and help me remember to put into action the things we talk about.

I hope everyone will get online and check out the ICHope Self Management Module and really explore it, and use it as it is intended. I think it is a great resource for each of us.

I’ll report back as I work through the activities and after each of the next two 30 day sessions.

Catherine Horine

Finding Comfort and Relief
8/22/2013

My name is Stacey, and I am 46 years old. I was officially diagnosed with IC three and a half years ago that was triggered by an emergency hysterectomy. However, I have been dealing with an “irritable bladder” since I was 28. When I received a diagnosis of IC, I was also diagnosed with pelvic pain syndrome, fibromyalgia, chronic fatigue, and Celiac Disease. Yes, that rocked my world! But, it certainly tied up a lot of loose ends. I had always told people I was the healthiest sick person around and eventually someone would pull it all together for me.

I was a teacher for over twenty five years and am on disability now. I can no longer do the job that I love in the classroom. I filed for Social Security Disability Insurance and received it within 4 months. This was due to my incredible doctors and the severity of my situation. Dr. Robert Evans, from Wake Forest Hospital in Winston Salem, NC is my Urologist. Dr. Michelle Grewal in Greensboro, NC is my gynecologist. They both manage all of my healthcare needs. I was stubborn and didn’t want to stop teaching. It was only when I could no longer walk or stand and the pain was so severe, that I finally gave in and took medical leave followed by permanent disability. As hard as Dr. Evans has tried, none of the IC protocols work for me. I have to rely on pain pills to make it through the day. My diet is limited due to IC plus the intolerance to all wheat products. While I would like to stay in bed all day, I do have a family to manage. I have a husband who worries endlessly and three children. Money is very tight.

While I am not at my best all the time, I am at home for my family much more than when I worked full-time. I have a wonderful support system of friends and family. I do some volunteer work at our temple and the kids’ school; I also tutor at home. Even though I feel horrible on the inside, my goal is to put on a positive face. It isn’t always easy. Most people tell me how wonderful I look and that I must be feeling better. This just makes me laugh! If they only knew that every part of my body hurt so badly. I tell them it is all about the product I use on my face. Even though I am dangerously low in weight, I refuse to get wrinkles!

Yes, I do throw myself a pity party for the things I can’t eat and the things I can’t do. I am however, so thankful that this is just a blip compared to all of the other diseases that people are forced to deal with. I actually consider myself lucky. I have held the hand of too many friends and comforted them through life threatening surgeries. IC can be a horrible thing to have to deal with. It affects my life and my entire family in many ways, but I can live with it. I have also been able to counsel others when I hear of symptoms that I recognize. To see the relief on their faces when I can tie up loose ends for them, send them in the direction of the right doctor, and help them understand the IC diet is gratifying. There is a reason for everything. I find comfort in believing that.

Stacey P.

We Are What We Eat
7/18/2013

My name is Kate, and I am a 39-year-old Midwesterner who demands that I have a car with heated seats – not because I can’t withstand the cold winter months, but because it’s like having a built-in heating pad for IC pain. My whole life was littered with these types of decisions – each outing, vacation, or career opportunity was clouded by considerations for how I would manage my disease that day. My life was limiting and getting smaller, but I wanted to get better. My doctors wanted to treat my symptoms and kept saying things like “There’s no cure.” We were at odds, to say the least. They would schedule me for scary, painful procedures (like hydrodistension) and I would call and cancel it because, frankly, I didn’t like my odds. It was with a great deal of research and patience that I finally got my life back. As of today, I have been in remission for more than three years.

I want every person who has IC (or who loves someone with IC) to know and believe that there is hope outside of the operating room and the prescription bottles. I was diagnosed in 2005 and really suffered those first few years. I was ready to go on disability and was suicidal because of the chronic pain. And then I started reading and talking to patients and nurses, and refusing to believe that my only options were to be doped up on narcotics and to suffer in silence with my heating pad in tow.

With the support of an unexpected ally – the integrative neurologist who was treating my headaches (also now completely gone!) – I discovered that I had spent my entire life eating foods to which I was either severely allergic or sensitive. Today, I am in remission not because of a medical treatment but because I CHANGED WHAT I EAT. It was that simple (but no, my urologist never asked me what I was eating or offered a shred of nutritional advice). I adopted a very strict (but satisfying) diet that excludes wheat, milk, eggs, meat and other triggers (like caffeine, melons, dark chocolate and avocado). For periodic pain, I use just 2 or 3 tablets of Prelief to completely resolve the discomfort, or stir a ½ teaspoon of baking soda into a glass of water. My only maintenance medication is a low daily dose of Imipramine, though I suspect I could stop taking it and feel nearly as well. This is not a diet about losing weight or fitting into a bikini, and it’s not a diet on which I ever “cheat” or plan to “finish.” This is my new life, and it’s a very good one.

Everyone’s IC story is slightly different, but mine can’t be that unique; I hope my story can help others. I was able to find a link between my body’s tendency to be acidic, and my pain/symptoms. Alkalizing my tissues (by eating things like celery, avoiding processed foods, and using Prelief and baking soda to raise my pH) has improved my health 100%. What’s more … once I got my tissue acidosis in check, my chronic muscle aches and my bilateral carpal tunnel syndrome (for which I was about to have surgery) have gone away too. My life today is phenomenal. I run a very successful business, am happily married (with four sleeping puppies under my desk right now) and I feel really great.

It took some reprogramming to teach myself to stop acting like “such an American” in my old belief that food was about social connections and traditions and indulgence. Today, food is fuel and medicine. (And yes, I do still go out to dinner with friends. I order grilled fish and veggies, and am very happy.) It also took time. The dietary changes took about a year to really have impact but I always believed it would work and never gave up hope. As my neurologist said, “It took your body 3 decades to get this toxic and inflamed. You’re not going to heal it overnight.” And then one day I realized, “Hey, I don’t remember the last time I turned on the heating pad or had to stay home from an event because I was in pain!”

My urologist tells me that I’m his only IC patient who has healed themselves. But I dream of a day when that’s just not the case anymore – when every IC patient lives a full and pain-free life and when the medical community has the knowledge it needs to help eradicate this disease once and for all. I worked for many years at a medical school in which there was not a single required course on nutrition for our nation’s future doctors. We can do better, America. And IC patients can be a driving force for this kind of positive change. I wish you all the very best on your healing journeys. If you’re ever in the Milwaukee area, look me up and I’ll take you grocery shopping.

-Kate C., Kenosha, WI

Fighting IC with Love, Hope, and a Positive Outlook
6/25/2013

Sometimes life causes us to lose focus on the real true meaning and purpose of life. We get thrown all over the place, losing meaning, values, love, trust and sometimes, our health. Trying to find our way again can be a real challenge. We may trip and fall. However, when it is all said and done, we have learned some of the most interesting life lessons through our journey.

My name is Patrick H. I am a 26-year-old male who has had my ups and downs, but never did I think I would be diagnosed with a life changing disease like interstitial cystitis (IC). Two and half years ago, I went from being an all-American athlete and very well person to being in a lot of pain and constantly in and out of the hospital due to IC. I went from being someone who never took an Advil to having to take over 15 medications at one time. All of this was something I was not ready for. I would often ask myself, “Is it really too much to ask for a little help or answers about IC?”

Although this horrible and indescribable disease has thrown me to the ground a couple of times in the past two and a half years, I have just taken back control of my life in the past six months. After going to doctor after doctor all over PA and finding no real answers to my pain, I finally said enough is enough. I am now fighting IC with love, hope and most of all, a positive outlook

I have found that the only way I am going to beat IC is by being happy and doing what I want to do, even if I am in a lot of pain. I have become more involved with my surroundings. I realize that your health becomes a burden if you let your mind wonder and let the pain take over. Don’t get me wrong – I am not saying that I have cured my IC. I am simply saying that the mind is the real healing power for any sickness. I also understand that there are a lot of people out there that have dealt with IC a lot longer than I have, and I understand that there are a lot more people out there that are in worse health than I am. The past couple years of my life have been hell for my family, friends, and me, but I can’t let IC write my path in life. I have also learned that maybe I was given the opportunity to start my life over again, like a fresh start with no regret. I am taking what I have learned and applying it to my new journey.

Success does not come from always doing well in life; it comes from failing, making mistakes, and overcoming challenges like IC. It is what you do with your challenges that really set you up to be very successful in life. I have gained most of my wisdom from my supporters and my doctors in my journey with IC. As optimistic as I am for someone to find the cure to this disease, I am just as optimistic to live my life with IC, even if I there isn’t a pill to cure me. There comes a time when we have to stop feeling sorry for ourselves and overcome the obstacles that have been given to us.

Patrick H.

The Best Feeling Ever
6/14/2013

I started having problems with urinary tract infections on a regular basis when I was 16. They couldn't figure out what was going on, since I was having them about twice a month. The doctor would have me come in on a monthly basis and do a catheterization withdrawal of my urine. I was never a big fan of having anything "shoved" into me, and to say that I never did like going to the monthly visits was not the best part of my regime.

It wasn't until I was 34 that the UTI's were turning into more than just an annoyance. I was having pains in my abdomen that I couldn't bear. It was a slow progression of pain. I thought that I was having a really bad experience or something, and went to my then new doctor to try to figure out what was going on. After months of pain, taking different medications for bacteria that weren’t there, I couldn't stand it anymore.

I looked up on the internet about having UTI's all of the time....thinking I might get some kind of answers that my doctor didn't have. It was then I found out about IC. It was like looking at all of the symptoms I had, right there in front of me. Least to say, I was thrilled, and I cried to find out what I finally had. But, in this small town that I lived in, we didn't have an urologist. I had to struggle in pain for almost three months before a traveling urologist came into town. Least to say, this was my saving grace.

When I went to the doctor, he basically confirmed what I had found online. But, when I called back to see him for a second time, he had moved. After almost a year of pain, going to the doctor, even having to go to the hospital several times because the pain was so bad I couldn't even move off of the toilet....I thought that I was going to have to suffer through this mini hell for the rest of my life. I had to take numerous days off of work, and take more Ibuprofen than it says to take on the bottle just to even attempt to get through the day. It was a miserable existence.

My now fiancé had told me that in a city just over the hill from where I live, there was an urologist that was one of the best in the country. Least to say, I was on the phone to his office, and getting myself an appointment. At that point, it didn't matter if my insurance covered it or not. He took me in, took some tests (including having my bladder expanded and checked out thoroughly) and put me on what I call a miracle drug call Elmiron. I also found a great resource (ICA), and they showed me a list of things that might cause me the pain in the first place. I had to take a lot of things out from my diet, but it really helped with my symptoms.

To make a long story (and ages in the process) short, I am now living mostly pain free. Once in awhile I have a flare up, but I know what I can do to make the pain go away. You cannot believe how wonderful it is to put a name to something that has plagued you for almost two centuries. And with the help of an awesome urologist, and little notes and information from ICA, I can now be proud to say that I am, for the most part... suffering from IC, with little to no pain.

And that is the best feeling ever!

-Ellen I.

What Has Worked for Me
6/14/2013

My name is Michele and I have been living with IC (the symptoms, but not the actual diagnosis) since I was about 10. I had a ton of food and environmental allergies when I was little (maybe there is a connection between the allergies and IC?) I managed to outgrow most of the allergies, but the IC stuck around (although I didn't know what it was at the time.) I was miserable with pain all the time. My mom took me to a couple of urologists, but they couldn't figure out my diagnosis since I never presented with an actual bladder infection. Slowly, I began to make some connections to my symptoms and my diet. About the time I was in high school, I figured out that orange juice was a major culprit of my symptoms. The pain it would cause was unreal -- it would completely shut me down for a day or more and it was the type of pain I couldn't escape no matter what I did to distract myself. I was officially diagnosed with IC at about the age of 30. Since then, I've come to learn what my triggers are and what I can do to help myself. Food and drink is a biggie for me. I try to explain to people that for me, having IC is kind of like having dermatitis (or eczema) inside my bladder and urethra. Spicy and acidic foods aren't good, artificial sweeteners are off limits, and yellow #5 is the worst for me. I am not a big water drinker which is a huge problem. I don't urinate nearly often enough and get dehydrated easily. Dehydration will put me into a tailspin, and it's difficult to recover.

Some of the things I do to help myself include drinking coconut water. I love the taste and it keeps me from becoming dehydrated without having to drink tons of water. Taking a multivitamins every day also helps. I have NO idea what the correlation is here, but honestly if I miss two or more days, I'm pretty much down for the count. Also, taking two capsules of D-Mannose every day is another supplement that helps me. When I do experience pain, I stay away from Advil and take Tylenol.

I recently discovered a really cool topical product. It is a desensitizing spray that, don't laugh, is used for male premature ejaculation! It has a numbing agent, lidocaine, that works wonders when I'm experiencing pain and don't want to be touched "there". I use 4-5 sprays in that "area" and experience instant relief from its cooling sensation. I can't tell you what a game changer this has been for me. I keep a bottle in my purse and take it when I travel.

I wish pain and symptom free days for all of my fellow IC ladies out there. I hope my story has helped you in any way possible.

- Michele

“Don’t Judge a Book by Its Cover” – Sarah’s Journey
5/17/2013

“My goodness, you are a classic case of ‘cannot judge a book by its cover’!” This is a statement I have come to know all too well. My name is Sarah D – a 24 year old university student still learning to live a life that many others would have given up on, or so I am always told. I share with you my life journey. I talk about the times I had wanted to give up, and about the strength I would always find within myself to keep going...

I was diagnosed at the age of 14 with fibromyalgia and a short while later, underwent reconstructive leg surgery (one leg at a time) for a birth defect that didn’t show itself until I reached the age of 10. Eight years of playing the piano has left me with carpal tunnel and tennis elbow in both arms. I was diagnosed a few weeks ago with PCOS and have been battling horrible gallbladder issues since December of 2012. I suffer from chronic sinusitis and am counting down the days until I undergo surgery to fix my deviated septum.

I cannot remember a day where I have woken up pain free. It has become a part of my life. It is something I began to wish would just go away, but now find myself wishing for the strength to carry me through. I remind myself that things could always be worse and I should be thankful for the things I do have: a loving and supportive family and boyfriend, a great education and wonderful opportunities to be successful. While many people, especially physicians and professors, don’t believe me when I tell them of my history, I find comfort in knowing that I am strong enough to radiate beauty on the outside and keep all my struggles on the inside; I haven’t given up the fight. This is why I have chosen to display this photo. This shoot symbolizes my internal struggles—feeling as though I was going crazy because no one could diagnose me, while at the same time maintaining my appearance to prove to others, and to myself, that I am a strong young lady.

Early winter 2010, my struggle with IC began. I started to feel a whole new pain, something I never experienced in a way I couldn’t ever imagine. I described it to my doctor as feeling like a UTI, but with horrible, sharp menstrual cramps. When the pain was so unbearable and crawling into a fetal position would no longer help, I would make my way over to the ER. There, I was told it was just a bladder infection. It bothered me so much when the ER doctors would say, “Well, you don’t look like you’re in excruciating pain...” So, just because I’m not screaming at the top of my lungs or bawling my eyes out, you don’t take me seriously? I prefer to sit there, focus on my breathing and maybe when it gets really, really bad, let a few tears roll down my cheeks. But because I look “fine”, I can’t possibly be in pain, right? I would just be given antibiotics and then sent home. I remember crying out to my extremely supportive and caring boyfriend and asking him why didn’t doctors believe me. After months of this pain, I started to wonder, “Am I crazy?! Am I just imagining all of this?!” I put on my strongest face and continued to struggle silently through life. Finally, at the end of summer 2011, I received my diagnosis, interstitial cystitis.

While relief shortly followed, the diagnosis brought on all new struggles. I struggled (and still do) daily with school as there are times I don’t even want to get out of bed let alone sit in a lecture for three hours. I struggle to find professors who are understanding or believing of my conditions. And when days are really bad, I struggle to find the will to keep going. I remind myself every sleepless night, when I feel like giving up, that God only gives us what we can handle. But, trust me, there were (and still are) a handful of times where I would say to God, “Okay, thank-you, I’ve had quite enough now. I think I’ve proven that I can be strong!” But, this is the life I’ve been given and so with every new diagnosis, I have to learn to be even stronger. I push myself to finish my schooling, to go to work, to be a great daughter, sister, girlfriend, and friend, and to surround myself with supportive people. I have learned to trust my body and to never give up when I feel that something is wrong. I have found a family physician who respects my opinions and works with me to figure each day out.

Each day brings a new struggle, a new diagnosis, and a new worry. But with it, the day brings new found hope, strength, and will to keep going. I leave you with a piece of advice: When you feel down about the struggles you’ve been given, focus on all the positives in your life. God may give us these struggles, but he rewards our endurance with the love of our family, the opportunity to inspire others, and the will power to enjoy our lives, despite living with IC.

Sarah D.

Live Moment to Moment
4/11/2013

I am a singer/songwriter, a mother, a wife, a sister and a granddaughter. These are all the biggest parts of me. These are titles I am honored to share with the world. Unfortunately, like too many people suffering, another title I share is interstitial cystitis patient. This disease has changed my life in so many ways. I remember clearly the day that I was told I had this after a year of OB/GYN visits, frustrating onset of pain, and trying to figure out exactly what I could do to change my pain. The doctor on call was foreign with a very thick accent. She asked me if someone had come with me. I said yes, my mom was in the waiting room. She asked if I wanted her to come in the room. I told her no thank you, having no earthly idea why she asked that. She looked at me and said very fast and in a thick accent, you have interstitial cystitis. Now, just imagine this being said very fast with a thick accent. Already the two words sound funny in English. Now when I tell this story I laugh because she was trying to tell me something serious, and I had no idea. I was completely oblivious. I said, “Uh whata whata?” She handed me a pamphlet, and I left. It was not until I had my first cystoscopy a week later to confirm what my body had already told me. I woke up from the procedure, looked into the eyes of my husband and mom, and saw the overwhelming sadness in their eyes. I said to them, “I have it, don’t I?”

I had just recovered from a 4-year bout with Lyme disease, and now this. I was at my wit’s end. I turned to my faith. While the old adage, “God does not give you more than you can handle” comforted me, I was thinking the man upstairs and I should have a serious Q and A session right about now. I felt I was already strong enough, no more testing needed, done please. As the years went by and instillations became part of my vocabulary, I learned to accept my new normal. Then in 2010, I was diagnosed with multiple sclerosis. While it took time to accept this as my new normal and to get my bearings, I have to say the IC is still the most awful part of anything I have experienced.

I was only 32 when I was diagnosed with IC. I have tried the interstim, but it did not work for me. I have tried Elmiron, and that was a dud. Atarax, instillations, deep breathing, yoga, and positive thinking have aided me in my living with this disease. It can be downright challenging to travel (insert sweaty palms here), embarrassing to wear bladder protection (insert baggy pants here), and hard to function on pain medicines (insert orange-stained pyridium baggy pants here)! Nevertheless, we are still here to enjoy this life. Joan Collins said it best, “Do not deny your age because many are denied the privilege.” Never give up, stay positive as often as you can, and laugh A LOT. Laugh at yourself and others will laugh with you. Cry when you need to, but remain strong. Surround yourself with people who love you and never worry about the people who do not understand. I read something once that really helped me. It said when people react badly about you having an illness, it is because they cannot accept it, and it is beyond their understanding. It has NOTHING to do with you. I am very blessed to have a loving and supportive husband. As we all know this disease will try to steal our very being, our need to be sexy and alive, but I fight it with every breathe I take. I live moment to moment and pray for healing every single day.

Michelle Zimney

Stronger than I Realized
4/11/2013

My name is Toni, and I started with IC symptoms at the age of 20. I have had over 22 operations on my bladder due to Hunner's ulcers and have had 30% of my bladder removed. The ulcers keep coming back and cannot be operated on anymore. I also have chronic bladder and kidney infections and the antibiotics don't touch them anymore. I must catheterize myself 6 times a day. I am under pain management which helps me a lot. My parents have sent me to the best hospitals and doctors. At 49 years old, they say I might lose my bladder someday.

I take the attitude that I am lucky to have a great support system and to have managed to have a son during all of this. Yes, pregnancy made my bladder worse, and I ended up in the hospital for weeks at a time. But he was worth it. I also read a lot, which helps take my mind off my pain, and when I feel ok I take long walks with my pug or go to lunch with my son. The difficult thing for me was having to give my job up and be disabled. I had to learn to take it easy when the pain gets too bad. I also have hepatitis C from a blood transfusion I needed during one of my operations. This condition makes me very tired. I have learned to take it day by day. I have a great urologist who is always there for me, and I am lucky that I have a lot of help. All I have to do is pick up the phone, and they are at my door. In being sick, I have learned who my real friends are and have surprised myself by how strong I am. People always ask how I do this. I smile, and say I don't have a choice!

ToniAnn Grimaldi

Compassion and Understanding: My IC Story
3/14/2013

I think I have had IC all my life. My bladder was deeply connected to my emotions, then hormones, then pregnancies, then entire life. I did not notice my toilet mapping while potty training my children.

I have read it, tried it, eaten it, bought it, and spent many hours driving to specialists. I am one of the lucky ones who has multiple chronic disorders. I did receive hope in my Interstim implant. I no longer need a diaper. Not even being 40, that was a huge relief. I still have pain, urgency, and multiple challenges, but have managed to simplify my regime. A half teaspoon of baking soda in 2 cups of warm water is a huge relief for my bladder. In my diet, common sense plays a major roll. If it has flavor, I avoid it.

All of this may sound glum, but I have grown to be a more compassionate and understanding person. My children will be extremely compassionate adults. IC has kept me home. If my body were well, I would have given up home schooling and missed out on what I feel very passionate about: educating my children. I have countless opportunities to count my blessings and offer my story for others who struggle with mind or body.

Monica

A Journey of a Thousand Miles Begins with a Single Step
1/10/2013

I was diagnosed with IC and Pelvic Floor Dysfunction in 2007. It started with pressure in my bladder that increased to horrible pain. I had many visits to Garden City Urgent Care for pain treatment. I also suffer from constant bladder infections. Dr. Creighton, a doctor at Urgent Care, said he thought I had interstitial cystitis. I had not a clue as to what this was. I went to a Urologist, who placed the InterStim implant for extreme urinary retention. I still had pain, however. I was referred to a pain clinic. They were unable to help, and I was given an appointment with a urogynecologist. I had landed in a place where help would finally begin. I was immediately placed on sick-leave for three months. I began instillations, medication, and physical therapy. The nurses and staff were very caring.

When we look good and feel terrible, people think we’re crazy and lazy. I am not crazy or lazy, and my diagnosis was a relief. Finally, I had a name to go with what was going on in my body.

I struggled with depression, lost friends, and felt my life was over as I knew it. I wanted to create a new life for myself.

I talked with my parents, my husband, and friends about either continuing to work or apply for Social Security Disability Insurance (SSDI). On February 14, 2011, I began the process. I made an appointment with an attorney who specializes in disability. I also contacted the ICA, and bought the Personalized Disability Workbook. Catherine Horine, an ICA volunteer, was a wonderful advocate who helped me tremendously. The information from the ICA that I had purchased was full of information I needed to have, and Catherine was a huge support and always there when I needed her.

I received several denials from the Social Security Administration (SSA), and I kept appealing. I had fire and determination, and I was not giving up. During the time I was waiting for my disability, I used all my paid leave. My parents helped as much as they could. My husband worked overtime. All I kept thinking was “Why? What did I do to get this illness and for my life to change so dramatically?”

I went to court for an appeal on July 6, 2012. I was shaking in my boots, terrified. The judge said the evidence was “overwhelming” that I could not work. The Vocational Expert agreed. I won my case! All I spent was nine minutes in court. It took fifteen months to get to this point.

I spend my days resting. I take solace in my short walks, reading, and keeping company with my three Shih Tzu’s while my husband is at work. I leave the house to go to medical appointments. I receive instillations every two weeks, take several medications, and go to Urgent Care if the pain is too intense to take. I try to go places with my husband, but then I rest the next day. I recently had twelve Botox injections by Dr. Sarah Fox at Women & Infant’s Hospital into my pelvic floor to reduce the spasms that were causing some of my pain.

I look to my life as a gift now. Life changed for me from being an energetic, physically active career woman to having no energy, resting every day, and dealing with pain. I cherish every day, and the people who stuck by me. IC patients know all too well that you lose friends, or people you thought were your friends. IC made me stop and assess what is important in life, and what isn’t. The people who are important in my life are those who care about you. You only get one shot at life so you want to make it a little better. I never take things for granted anymore.

The buzz word here is “empowerment” or sticking up for yourself with medical professionals.

It is also important to be with people who know what this dreadful illness is about. I started to run the Rhode Island Support Group for patients with IC. I finally met people who knew what IC was about.

I am grateful for my wonderful husband, Michael, and my parents who were always there for me. Nothing is constant in life; life is about change and how we handle it. I try not to take life too seriously. Live. Laugh. Love. Find your gift.

Lynne LaBianca, Rhode Island

A Story of Self-Healing
12/13/2012

The following story describes my private odyssey from self-blame and shame to knowledge and compassion about the origin and treatment for what I have come to know as “IC”… two letters that would forever alter my life and perspective.

After years of searching for a diagnosis from many specialists, I feared that the medical community was not taking my pain seriously. Following countless negative findings, my physician would inevitably refer me to another specialist. Due to the chronic and ambiguous nature of my symptoms, it took years of not only researching and soul-searching, but also trial and error with multiple medications.

Despite intense pain and exhaustion from sleepless nights (some nights I made well over 50 trips to the bathroom), I literally dragged myself through my undergraduate and graduate education. Why didn’t I give-in? Somehow, I knew that what I was doing was worthwhile and that I could potentially help others and myself. Thus, when it came time to choose my doctoral dissertation topic, there was no question; I chose to study the subjective experience of women living with IC. It’s funny how life surprises you. I started my work convinced that I would uncover a fault in the medical system; however, I discovered that blame was useless and that personal responsibility was my path to freedom.

From my research, I gained control and learned effective ways to modulate my pain using specific attention shifting techniques, such as mindfulness training, and other methods of controlling my awareness/perception of reality. This research brought me to a place I never imagined: I am almost completely pain free (with at least an 80% reduction of flare-ups). I am now a doctor (of psychology) and practicing in West LA, devoting my clinical work to helping others who struggle with perfectionism, chronic pain, obsessive-compulsive disorder (OCD) and other anxiety disorders.

As I sit here writing this, I feel love and hope for all of you. A change in perspective is a change in your subjective reality. For me, clarity came in a slow uphill battle as well as in bursts of “ah-ha” moments. One of my favorite realizations—I was viewing my IC as a thing to get rid of as opposed to a part of myself from which to learn. Much of my healing was to accept and look into my pain with a compassionate attitude instead of trying to escape. This process lowered my anger and anxiety, and I was left with a pure moment of peace. Accepting the discomfort was the first time I was able to look at it in a calm and welcoming way. I truly realized that which we resist persists. The application and the significance of this insight took years for me to internalize. Only by stepping out of what I intellectually understood from this teaching was I was able to have a different view of my relationship with IC in order to see that a perceived enemy can also be a best friend.

I am one story and I encourage you to follow your dreams and share yours

Lauren Stutman, Psy.D., California

I BELIEVE
8/16/2012

I believe IC has actually made me a better person. I believe IC has helped me communicate better and I believe living with IC isn’t the worst thing in the world that could have happened to me. Yes, I believe that having IC for 11 years, 12 surgeries, and being on disability due to my IC has catherine horinebeen difficult. I believe having IC, as all of us that suffer with it know, is a struggle every single day. I believe it would be very easy to curl up in a ball and do nothing but cry and never get out of bed. But I believe there is a different path. I believe that choosing to work with a therapist has helped me learn better coping strategies and how to deal with anxiety issues. I believe that giving in to negative feelings doesn’t help me or anyone else, and I believe absolutely 100% that people can and do understand what I am going through. I believe that I am blessed with wonderful friends and family and each and every one has supported me through this journey, asked me to help them understand and are always there for me offering support, love and a shoulder to lean on. I believe that the people that I have encountered in my life that don’t know what IC is, or understand it, will take the time to listen and ask questions if I ask them to. I believe people mean well when they tell me I look great even if I don’t feel great! I believe that my life is nowhere near over. I believe that the best thing I can do for myself is to take care of myself and strive to be as positive as I can each and every day. I believe I can’t do anything about getting IC, but I believe I can CHOOSE how I deal with it. So I believe that in order to help myself I can and should help other IC patients. I believe that people can mean well even if they say something stupid, and I believe that my life isn’t over even though it IS changed forever. I believe in the ICA and that by being and active dues paying member and volunteer I can help others. I believe that assisting my local Support Group Leader get our group up and running gives me the inspiration I need to stay positive. I believe each and every member of our Support Group has inspired me and I believe in them and all my IC friends. I am and IC patient, patient advocate and I believe in me.

Watch Catherine's video, My IC Story, on YouTube!

Catherine Horine, IL

The Brightness of Healing
6/11/2012

I live in the UK and became ill in the summer of 1998, although I had suffered from urethritis and repeated cystitis infections for several years prior to that. At the time I had a very active social life but my life then changed overnight. The tipping point for me came after the use of several cans of pesticide spray for a moth infestation at home and I was also using chemical dyes for my work.

Although I hadn’t realised it, I was already chemically sensitive, my energy was very low and after drinking half a pint of beer one evening about a week later, I woke up the next morning with a pain in my bladder that would not go away. Antibiotics only made the pain worse, the situation continued to deteriorate for a while, and when I visited doctors and specialists there seemed to be very little hope at all of escaping this terrible condition. I decided to find alternative ways to get better.

The first practitioner I went to see was a naturopath who looked at a urine sample under a microscope which was attached to a TV screen and he pointed out the bacteria and fungi, as well as the pieces of skin from where the lining of my bladder had become detached. The treatment that I was given seemed to halt the progression of my symptoms, which had been continuing to worsen. Although this was a great relief, I was still left with the burning pain inside my bladder and so I tried a number of other alternative treatments including acupuncture, homeopathy, Reiki, reflexology and Chinese herbal medicine. Whilst all these played a valuable part in my healing process, the turning point came when I visited a kinesiologist, who used muscle testing to identify imbalances in my body and to determine which supplements and remedies would work best for me. After this my health began to improve more steadily until I reached a point where it is now better than I could previously have imagined.

When I informed the hospital specialist that I had recovered from a painful bladder, his response was that I had gone into remission, but to this date I have never returned to the situation I was in and although I try to lead a healthier lifestyle, I can eat and drink whatever I like and I got my life back. I have now written a book called The Brightness of Healing, outlining the treatments and changes to lifestyle I used to get myself better.

Never Give Up
3/15/2012

From the time I can remember I have always had urinary frequency. I remember my grandmother wanting to check my blood sugar all the time because I had to urinate so often. I even remember when I was little having to sit at the kitchen Aleasha - Voices of Hopetable and my mother making me drink water till I couldn’t move because I had burning when I urinated all the time. At the age of 16 I started having pelvic pain. I would go to my Primary care doctor’s office frequently with pelvic pain and UTI signs and symptoms but the two were never linked.

I spent every Friday of my senior year in high school driving myself 70 miles one way to the gynecologist trying to treat and figure out what was causing my pelvic pain. Not only did I have pelvic pain but I also had vulvar pain.

By the time I was 21 I had been to over 20 different gynecologists trying to figure out what was wrong with me. Some would try to figure it out and when they were not successful they would send me on while others would just make me feel like I was crazy. I had been placed on several different medications including testosterone, oral and topical estrogen, Elavil, and several others. I remember being told several times that there was nothing wrong with me and that I should look into seeing a psychiatrist. I had been sent to a Tertiary Care Center for the second time. They had performed every test one could think of without any diagnosis.

I will never forget my very first appointment with an urologist. He walked in the room, my chart in hand, reached his hand out to shake mine, and at the same time said, “I think you have interstitial cystitis”. My thoughts were “What in the world is interstitial cystitis?” and “I have a diagnosis!’ I couldn’t believe it. I am not crazy there was really something wrong with me.

Like most interstitial cystitis patients I also have other problems like IBS, GERD, vulvodynia, and chronic sinus problems. I also have sensitivities to allergens and scents. I think that my symptoms are managed pretty well now because I have been doing this for so long and can tell when things are going to flare. I have to manage my stress because it is definitely a trigger and make sure I drink lots and lots of water.

I am an ER nurse and am on the go all day. I would not be able to do my job if it were not for my Interstim implant. It brought tears to my eyes when I saw the reports of all the new treatments that are being developed. I have not had a new treatment option for 10 years since I had my Interstim implant placed. I just want to tell everyone to never give up. One day you will find the right treatment for you, it might not be out there yet but I have no doubt it will be.

Aleasha, RN

Marathons, Accordions, and Karaoke Gigs—My Wife Lisa
11/22/2011

My wife Lisa was diagnosed with IC in 2006 after we were married. She was a marathon runner when we met at Storm Lake. She was having pee problems after we were married and found out what she had at the Sioux Falls urology clinic. She guessed that that was what she had and some nurses at the McKennen Hospital told her they thought she might have IC (she was having a colonoscopy at the time). Some of our local doctors told her she could not have IC but did not check her for it! She had to get on Elmiron and Flo-max and really had to watch what she ate! It was very hard for her—she could not eat at restaurants without knowing what was in everything! Later, when she joined the ICA, they recommended to her that she get Aloe Vera capsules and magnesium tablets from Desert Harvest in Colorado. Since she has been on the Aloe Vera, she has been eating normally for the last 2 years or so! She still “caths” Elmiron into her bladder about every 10 days and takes Flo-max. She has run marathons with me even when she had more problems but she really studied and helped herself. I am very proud of her! She sings karaoke songs with me at a local nursing home once a month and plays accordion (by ear), too.

The Alternative Gift
11/7/2011

In 2000 when my urologist described my IC to me using the words “chronic” and reassured me that it can be managed, all I heard was: You will have this your whole life. I was just 26.

After six months of Elmiron, I was in remission. However, I had elevated liver enzymes from the medication. I also experienced intestinal side effects and started to lose weight that I preferred to keep. The remission honeymoon ended, and I knew my treatment was not a long term solution for me to manage my leftover IC symptoms.

Just when I wasn’t sure what to do next, I was given a Christmas gift. My family gave me a check made out to a chiropractor specializing in acupuncture and Traditional Chinese Medicine (TCM), and if I wanted, I could use it to go to him once a week for 6 weeks.

The appointments with the chiropractor were starkly different from all the ones I’ve had with Western medicine doctors: He studied my tongue, noting its color and texture, and listened to my pulse on my wrist with his two fingers, describing it as “wiry” and “weak”. He began speaking a language I had never heard before. New diagnostic words rang in my ears, such as kidney stagnation, liver stagnation and Qi (pronounced “Chee”) stagnation.

The chiropractor also checked me for food sensitivities. At the same moment a certain food was in my mouth, he would perform a muscle test: If my arm stretched out to my side could not withstand his minor pressure as he pushed down on it with his hands, I had to eliminate that food. Wheat, dairy, vinegar, and refined sugar made the list.

I continued my treatments with him, but only because during the last two weeks of my trial period I started to feel a small improvement. I continued to take herbs everyday and reduced my acupuncture and chiropractic spinal care treatments to every two weeks. We had set-backs when my IC flared up during stressful events, or when we lost time as he experimented with herbs to produce the best results. It was a slow process, and sometimes frustrating, but the direction of improvement was upwards towards amazing health. I stayed with it for four years.

Today I am 99% symptom free and I have not taken IC drugs for more than a decade. I don’t remember the strange names of the herbs I took or where all the acupuncture needles were stuck on my body like points on a city map. But I remember like yesterday the fear that came with being diagnosed with IC at a young age. This fear opened me up to an alternative journey for healing that may not work or be for everyone. But thankfully, it did and was for me.

by Ann Saba

I Won’t Let IC Steal My Life
10/4/2011

Imagine if for over twenty years, you had an illness. A condition that at times would make your life come to a grinding halt. A condition that was misdiagnosed and surgically treated as a completely different disease. One doctor after another, one diagnosis after the other. This was how I spend the last twenty years of my life. I was treated for UTIs and given one antibiotic after the other, had two laparoscopic surgeries which resolved nothing. I was blessed to have four wonderful children early in life. The summer before I was to be married to the love of my life, I had a complete hysterectomy at the age of 32. After the wedding, we returned to life, I had recovered from the hysterectomy and was back to work. Then, the pain returned…

I was going to get to the bottom of this once and for all. One of my customers is a physician and as soon as she opened her practice I was there! She did a urine test, no infection. She suggested perhaps I had IC. Twenty years of the same problem, and now, perhaps there is a name for what I have been living with. My next step was to visit a urologist. We did the routine tests, plus I had a scope inserted into the bladder. Next office visit… a name…a diagnosis…interstitial cystitis.

My journey to the diagnosis of IC was long and hard. I still live with this every day. One thing I won’t let IC do is steal my life. I let it do that for far too long. Now that I know the name of the beast, I know what I am fighting. Less than a year ago, I couldn’t walk a mile—the pain would be so intense. Now, a year after my diagnosis and six months into treatments I am preparing to run my first half marathon this February and a full marathon this fall. Yes, there are days I cannot get out of bed let alone run mile upon mile, but I celebrate those days that I can. I can and WILL slay this beast. When I cross that finish line in October after completing 26.2 miles the crowd will see my personalized runner bib that says simply “I C HOPE.”

I am a mother and daughter and wife. I am a runner. I am a survivor.

Jennifer, Michigan

I Defy IC by Riding Roller Coasters
10/4/2011

My basics: My name is Lauren Rae Ratcliff and I just turned 30 years old.

My story: Getting diagnosed and treated for IC is arduous. Plus, I have a condition called Asperger Syndrome which is an autism spectrum disorder, as well as the comorbid conditions of IC. At the age of 22 years I made an appointment with my gynecologist who immediately diagnosed me with IC at my first appointment and put me on a treatment plan that consisted of elmiron, neurontin, and some other meds. Plus she referred me to a urologist who I also feel has really understood my symptoms. This doctor put me on a treatment plan which included mostly pelvic floor physical therapy and followed up on what my gynecologist recommended.

I have a college degree and a cosmetology license but the pain and urinary issues of IC and the emotional side effects of having Asperger Syndrome make holding down a job challenging for me. As of right now I hope to make the best of my life and want to do whatever possible to help others who are suffering from these conditions including starting up support groups. I would still like to get a master’s degree and use that to help other patients also whether I have a job or not.

One hobby that I have been obsessed with since I was a young child is riding roller coasters. At this time I’ve ridden nearly 100 of them and one of my goals is to ride the majority of the coasters in the United States. I was blessed enough to discover a fan club for roller coaster lovers and joined two years later. Each time I go to amusement parks I make a plan of attack: I need restroom access and I make sure I scope out the restrooms and buy front of the line passes at parks that have them. Plus I try to find the best days possible to go to amusement parks so that I won’t have to wait in line. Hopefully with myself being an IC patient that I will also be able to raise awareness and money for the ICA through this roller coaster fan club at some of our outings at amusement parks.

I want to encourage all IC patients to not lose hope and keep on trying to live a healthy life. I do everything possible to live the healthiest life possible. Don’t let anyone get you down and make sure that you find someone who listens to you regardless of your life status.

Lauren

A Personal Experience
9/27/2011

I knew that I was different from other people even as a young child. I had severe pelvic pain even then. I remember being frightened to death as a little girl when I was given a pelvic exam at age 8. It was so traumatic that I cringe when I think of it to this day.  I remember the doctor prescribed some sort of cream, but it burned my skin so badly that my mom threw it away and I suffered in silence from the point on.

In my 20’s, the problems seemed to go away. I got married and enjoyed a relatively normal sex life. Then, I had a couple of babies and everything fell apart. I was taking care of my two children (less than 2 years apart in age) one day while my husband was away on business. I felt a urinary tract infection coming on, but couldn’t get to town for a doctor’s appointment. I thought I could wait until the next morning when my husband would be home to keep the children. I never made it. I called a neighbor who found me passed out, from pain, on the foyer floor. I was treated at the ER for an infection. The severity of the pain went away, for a while, but it never really left for good.

I was 30 years old when I was diagnosed with IC. I was fortunate to have found a doctor who knew about IC and suspected it right away. By this time, I had been treated repeatedly with antibiotics, without relief, for 15 so-called “UTI’s” and sexual intercourse had become so painful that my relationship with my husband was strained.

These days, 16 years after my initial diagnosis, I am still living with interstitial cystitis as my life partner. Even so, this illness no longer rules my daily life. I still have the symptom flares that are a trademark of IC, but have moved past the point of needing pain medication to live productively. I've learned many self-help techniques that really do work for me. I teach Jazzercise part time and volunteer with the high school boosters club. I can fully participate in the activities my children are involved in at school. I am still married to my husband of 21 years and he has seen me pull back from that total brink of despair that ruled my 30s. Life with IC has been a tumultuous journey but I've partnered with the ICA to build something positive out of the journey.

Rhonda, Florida

Barb's IC Journey
9/26/2011

My journey with IC began in 1995. I woke up one morning with what I thought was a very bad bladder infection. The pain stopped me in my tracks. A urine culture came back normal, and thus began five years of searching for a diagnosis and treatment.

During this time I visited different doctors and no one was able to help ease my pain. Then in 2000, I saw a urogynecologist who diagnosed and began treating my IC. I was so excited to finally have someone who could help me. I felt like I’d won the lottery! I tried many different treatments over the years, and was able to get my IC under better control with less pain and fewer bathroom trips, but still not at the level I was hoping for.

During the summer of 2008, I had a procedure done where the ulcers in my bladder were cauterized. At first, I was sore and experiencing pain, but as my bladder healed I was having relief from pain for the first time in many years, and I continue to benefit from the procedure to this day. I take medication as needed and follow the IC Diet. I do yoga and walk as often as possible. I go to the bathroom more frequently than is normal, and I know that I have not been “cured,” but the decrease in pain has made a significant change to my quality of life!

I decided at the beginning of my IC journey, that IC would not define me. I have worked hard to live the best life that I can while dealing with IC. Running a support group and being a patient advocate have been wonderful ways for me to connect with other IC patients and to help them in some way. Serving as Co-chair of the Board of Directors of the ICA with my wonderful husband, Eric, has been so rewarding for me and I am thankful each day for the opportunity to make a difference in our mission to find a cure for this disease!

Barb Zarnikow
Illinois

New Study Working For Me!
9/14/2011

I am 56 years old and live in North San Diego County in Southern California. I have had IC since I injured myself, falling butt-first onto a concrete floor, in November 2007. At least that is when my symptoms became noticeable and, from then on, steadily, chronically worsened. I have had most of the symptoms that other bloggers indicate they have had and the pain has been increasingly debilitating, sometimes causing me to miss work, which I cannot afford to do.

I have been completely miserable with various degrees of pain on a daily basis and have had to take pain killers (Tramadol). I hate to take that stuff, but it does take enough edge off the pain so that I can engage in limited daily activity and so that I don’t “lock up”, unable to urinate due to the pain. I used to like to run on the beach, but those days have been over for some time due to the pain. I have tried many traditional Western therapies, bladder installations, diets and medications. I have also tried Eastern medicine, supplements and diets. Nothing has been very helpful until now...

My urologist, Dr. Philip Bosch of Escondido, CA is conducting a 12-week study in cooperation with Abbott Labs to see if Abbott Labs’ medication Humira, used to treat Crohn’s Disease and some types of rheumatoid arthritis, might be helpful in reducing or eliminating IC symptoms. The medication has been out on the market for about 10 years and been effective in treating those other disorders. I have heard that patients being treated with Humira for those disorders, who also have IC, have reported that the Humira reduces or eliminates their IC symptoms. I have seen the commercials on TV for Humira, but otherwise didn’t know a lot about it.

I have another 4 weeks left in the study, but, so far, the results have been completely amazing. In the very first day I noticed improvement in bladder capacity, reduced bladder pain, reduced frequency of urination (day and night). I no longer need pain killers on a daily basis, and only in small amounts during occasional flares, which are less frequent, shorter in duration and less painful than those I had before beginning the study. This is great!

I am noticing gradual improvements week-by-week, have been able to increase my daily activities and I haven’t missed any work since beginning this study. Last week I was even able to go running on the beach again. I am finally getting my life back!

Tom Potter, Escondido, CA

Jessica’s Story in Short Form
7/21/2011

My name is Jessica Dorsey. I am a 33 year old mother of two. I have been a registered nurse for 12 years. My story begins as a little girl who struggled with getting the last pee of the night out so that I could sleep...I remember so clearly the stress of knowing that all of the other kids my age were sleeping soundly. And, I was not.

Years passed. I lived with the urge to urinate often and had at times symptoms of UTIs. I would go to my PCP and get meds. Sometimes I was diagnosed with bacterial infections, sometimes not.

Years passed. I graduated from high school and then college. I married a wonderful man—a pharmacist who inspires me in every way to be a wonderful fighter. Things went well for us. We traveled and were very avid runners.

Years passed. After the birth of my second child, I started to ache in my pelvic area 24/7 and the pain kept getting worse...My pain would stay at an “8” most days.

Well, after I read and read…I made an appointment with a urologist and said I think I have IC. I then went to a urogynecologist. I said I think I have IC. In the office she said, “Wow you have ulcers on your bladder, let’s do 11 weeks of DSMO.” Did it and my pain got worse. At the visit to urologist #2, I said PAIN!!! is terrible. So I got cystoscopy and I had multiple glomerulations and still the bleeding was there so who knows if it helped some or not...?

So, I changed my diet. I also take Elmiron, Prosed, pain medicines and do self-instillations two times a day. Pelvic floor physical therapy has given me the tools to keep the knots that the IC gives to my muscles in the areas beneath the bladder the strength they need to stay calm and cool.

Dr. Robert Evans at Wake Forest Medical Center has saved my life and given me hope! Doctors can help us. My advice is also to listen to your body and research everything...I am an advocate for taking your feelings and questions into your own hands. IC families exist and we are a wonderful network of friends who can depend on each other...we are strong and are there for each other...we know what the feelings are and no two of us are the same.

I have met some of the most amazing people on my journey...

My story in a short form :)
Jessica Dorsey

One Hundred Recommendations
4/13/2011

I remember the first evening I experienced IC symptoms, more than eight years ago. I voided more than a dozen times that evening. After voiding each time that evening, I felt as if my bladder was still filled. That evening, I also experienced unbearable pelvic pain. The symptoms got better the next day, but got worse the day after that.

My primary care physician knew right away that this was a medical problem he could not tackle by himself. He referred me to a urologist, who diagnosed me with an enlarged prostate. For the next several years, I continued to take prostate medicines, but the symptoms got worse. Over time, I switched urologists half a dozen times, and each time got the same diagnosis, and over time, my condition deteriorated.

The very worst evening of my life was the night I spent at a Washington DC hospital emergency room, almost three thousand miles away from home. That evening, I was unable to void, and sent back to my hotel room with a catheter, which I had to wear on the airplane ride home to California. After returning home, I vowed that I had to take control over my health, and be more proactive in finding physicians and treatments that would resolve whatever it was that was wrong with me.

After finally finding a urologist who was interested in finding out what the problem was from, I felt as if my long nightmare might be ending. This urologist was willing and able to give me the diagnostic tests I asked for, and then diagnosed me with IC following a hydrodistension and bladder biopsy that showed chronic inflammation in the bladder. I immediately sought a second opinion from one of the leaders in IC medicine, in San Francisco. My diagnosis was confirmed, and I was told that because it took more than three and half years from the onset of symptoms to a diagnosis, the likelihood of a full recovery was not very good.

In the intervening years, my overall condition has improved, even though I realize I may never fully recover from this. I attribute some of this improvement to a change in diet that eliminates irritants such as acids, caffeine and carbonation. I also attribute improvements in my condition to the Elmiron medication I take twice a day, to intermittent bladder installations, and to ongoing physical therapy.

I never would have built a roadway to health without the support of the ICA staff that gave me emotional and logistical support immediately after my diagnosis. I also acknowledge the support given me from the Orange County California IC support group that gave me ideas on how to tackle my health issues, and to the physicians that I found willing and able to find the treatments that worked for me.

I am now writing a book chronicling my journey with IC and with several other chronic illnesses, including lower back pain due to disk deterioration. My book will provide one hundred recommendations for patients to better manage their health care, including how to find better physicians, how to seek emotional help and logistical support following surgery, and how to manage their insurance companies.

Edward Lopatin
Palm Springs, California

Life is Good: It Can and Will Get Better
1/25/2011

My name is Linda and I am a 62 year old wife, mother, grandmother, daughter and friend. In 2007 I was a retired Grandma enjoying life to it's fullest, traveling with my husband, preparing meals for family and friends, and enjoying my grandson when I began experiencing severe pelvic pressure. I could hardly continue my morning beach walks without having to stop for a restroom. I brought this to the attention of my Ob/Gyn and she suggested I see a urologist.

The urologist, after examining me, prescribed local estrogen, saying that would do the trick. After all, I had been through surgical menopause after having a hysterectomy about seven years earlier and probably needed the estrogen. Less than a month later I began experiencing severe knife stabbing pains in my pelvic region and the only relief I found was by voiding, and that was about every 1/2 hour daily plus 4 to 5 times during the night. After about 6 months of this pain, I became aware that diet might be involved when I had a major flare after eating a handful of cherry tomatoes!

After searching on the internet and sharing what I found with my urologist, he and I agreed that I most likely had interstitial cystitis. That's when I began to give up certain foods, i.e., caffeinated tea, spaghetti sauce, orange juice, and wine. I knew wine was a trigger for flares, but it was hard to give up when eating out so often with my very social husband.

After several months of Elmiron and various overactive bladder drugs and no real improvement, I decided to see another urologist. She performed a cystoscopy/hydro and agreed with the diagnosis offering instills as a solution. I passed on that and instead went to see a third urologist at a research hospital. She seemed to be a bit more sympathetic to my pain and offered me Elavil.

Waking up to void at night and falling back to sleep was always a problem for me. I never felt like I had a good night's sleep. The Elavil allowed me to return to sleep after my many trips to the bathroom during the night. But, I have to tell you, for me the best results were after seeing an acupuncturist who put me on a really strict elimination diet. I did enjoy the acupuncture, found it to be a very relaxing experience, although even she thought it was really the new diet that was actually helping me.

My symptoms finally started to improve and today I am mostly pain free. I haven't had a serious flare in a very long time. I even made it through the holidays without a problem. I do still limit my diet to plain and simple foods, no caffeine, very little salt or spice, and definitely no red wine. The best news is that my husband and I have taken several trips, including a river cruise on the Danube last fall.

I never thought it would be possible to continue our travels, but I found that cruise ships will accommodate passengers with dietary needs. I'm much calmer than ever, taking one day at a time. I use a special pillow for long drives and plane rides. It isn't always easy, but I have good friends who know and care about me and my condition and are always ready to prepare a special meal for me when they are entertaining.

Life is good. It can and will get better. Join the ICA for updates and lots of helpful information. A support group may help also. Find the right doctor, one who listens and cares. Prepare ahead and most of all stay relaxed. I have taken up yoga and I remember to breathe! I'm back to walking on the beach and I'm fortunate that I can still enjoy my grandson, my family and friends and traveling with my husband. Think positive! You'll find what works best for you very soon!

Linda Hart

My name is Teresa. Here is my story.
1/12/2011

In 1992 I was living in a suburb of Washington, D.C. and had been employed as a legal assistant for a Washington law firm for 16 years. I had an active social life, many friends and for the most part a "great life". In March of that year my life would change and the nightmare began. I developed what I initially thought to be a routine urinary tract infection. My doctor put me on antibiotics and, after taking them for three weeks with no relief, I knew that something else was wrong. Over the next nine months I saw six different urologists. I was urinating up to 30 times a day, and the pelvic pressure was so horrific I had difficulty walking. I was told that I was "stressed out", just "wanted drugs" and that I was "crazy". One doctor actually told me that I was "in denial that my biological clock was ticking."

I found a doctor who specialized in female bladder problems and made an appointment. I told him that "I would not leave his office until he found out what was wrong with me."

I have now been pain free for five years. The drugs do have side effects, a few of which are dry mouth and lack of energy. However, this is much easier to deal with than the pain of IC. Although the pain of IC has been compared to the pain of end-stage cancer, it is hard to convince people of the severity of the disease. I often hear "you look fine, you can't be that sick" or "get over it, you are not going to die."

On a positive note, I have come to realize what a "good life" I had before IC and not to take anything for granted. Actually, IC is not that rare--over four million men and women have IC and many more may be misdiagnosed. I have become more politically active and have developed a greater compassion for those who suffer from chronic illnesses. I have also become acquainted with a number of women who suffer from IC through support groups on the internet. I think the greatest compliment I have ever received was when one woman called me her "guardian angel."

For a long time I was embarrassed to discuss my illness and what I had gone through. I am now proud to share my story with others so that they may find some answers. I pray that a cure will be found and that no one will have to suffer from this devastating illness.

If You Have a Moment of Less Pain, Do Something You Love
12/16/2010

Adapted From Tali’s Blog: The Ramblings of an IC Patient

I was filmed for the MTV episode for almost 4 months. There was no script, no telling how much time would be spent filmed while the crew was in the house or out following us around, and there was nothing that was guaranteed to make it onto the final cut or not. Think about how much goes on in 4 months of a chronic pain patient’s life and then think about how much of that shit that goes on in 4 months can make it in a 13 minute episode. We are much more complicated and time consuming than that. Sometimes it takes me 13 minutes to pee properly. You do the timeline. Clearly there was a lot that was left out.

I am not cured… but know that my symptoms and conditions are managed, controlled, and taught how to relax even in the worst pain so that it doesn’t get worse and worse and worse. Cured doesn’t exist yet. But it WILL. That is what we are working for. My hope is to get everyone to a pain free state whether it’s officially cured or not. Cured is just a word…with a definition that someone, somewhere, at some point in time, thousands of years ago, gave it. Nothing more. What we need is hope…and a positive energetic path that shows each person the steps to take to get to their own personal “cure” their own personal wellness…their own personal route to conquer the pain. Don’t let the statement “no cure yet” control you. You control you.

I am not letting my conditions control me in any way shape or form…I am that person that questions every treatment…every single thing a doctor tells me, and I am that crazy kid that has been studying these conditions like a mad scientist from the second I was diagnosed…If it were up to me IC people would have their own reality show that could truly encompass everything the IC patient goes through on a daily basis. If it were up to me I’d go around the world talking to IC and CPP patients about their struggles…and I plan to. I have projects in the works that will hopefully help make turn a “taboo” shunned public topic into a “non taboo” public presence for these conditions. That is my promise and as long as my health can permit it’s what I’ll do.

I want to send a personal thank you to the other two girls in the show. Tamra and Tess…you were both so brave in sharing your stories as well and I wish you pain free days and better times. Thank you for helping to join the fight and make people realize that this exists. Stay strong. One day I hope to meet you both! Thank you to everyone who has shown amazing support. I truly appreciate your motivation! For my family and friends who cringed at some of the stuff on that show….keep in mind that it helped me get some of ME back and it is helping so many others find their way back to the real THEM as well…

REMEMBER…SMILE, BE THANKFUL, LAUGH, LOVE, DON’T LOSE FAITH. IF YOU HAVE A MOMENT OF LESS PAIN, DO SOMETHING YOU LOVE.

Getting a Diagnosis Helped My Psyche
11/10/2010

I am a 48-year-old African American Christian woman happily married for 23 years to Alvin Wilson. According to my pain specialist, I have one of the worst cases of IC he has ever seen. Unlike many of his patients, I rarely get relief from the pain and side effects of the drugs used to manage my pain. To reduce the pain, I take narcotics and do bladder instillations morning and night.

My ordeal began when I had surgery to remove ovarian fibroids. My abdominal pain worsened, I had an allergic reaction to the sutures and adhesions, and I underwent more surgery for these problems.

Afterward, I was still in pain and had a urinary tract infection. After many tests came back normal, my wonderful gynecologist, Fermin F. Barrueto, MD, in Towson, Maryland, focused on my bladder. He asked me about my voiding habits, which I thought were normal, but they were not. Hydrodistention showed my bladder was full of hemorrhages. I developed terrible frequency and urgency an pain so severe that I couldn’t stand up straight without screaming, “Bloody Murder!”

I had IC. Dr. Barrueto gave me information, including an IC diet; prescribed IC medicines; and referred me to a thorough and compassionate pelvic pain specialist Richard Marvel, MD.

Tammy Wilson

My IC Journey: In-between Potty Breaks
10/20/2010

Instead of interstitial cystitis (IC) becoming a curse for me it has become a life-changing gift.

I was devastated and angry when first diagnosed in 1983. Then I was relieved to have a name for what plagued my every waking minute and interrupted my sleep. In-between potty breaks I decided to fight rather than give up. I went back to school and got my Master’s degree in Social Work. I opened a holistic private practice and began to counsel among others, “IC” patients offering them hope and encouragement. Creative ways to deal with pain emerged. I began to meditate and ended up doing my doctoral dissertation on the positive effects of meditation for those in recovery from alcohol and drugs. Instead of focusing on what I could not eat or do I looked for methods to enhance my palate and expand my physical limitations. Each time a new ICA Update arrived I immediately sat down and read it entirely looking for nuggets of information to add to my repertoire of coping tools. I was not disappointed.

Years ago I started support groups as an ICA volunteer in South Carolina and had the privilege to travel to other states to offer assistance to their coordinators. Instead of wallowing in “ain’t it awful,” I looked for how my situation could be used to my advantage. Along the path other conditions surfaced, which I thought originally were related to IC and now research is showing probable connections. These included IBS, allergies, fibromyalgia, vulvodynia, and food intolerances. With each added diagnosis I educated my health practitioners about the development and kept them informed. The result was they now look to me for updated information. They refer patients to me for support.

My story does not end there. Last year I went through a divorce, was diagnosed with colon cancer, and a blocked right carotid artery. Two surgeries within seven days and a two-week hospitalization took its toll on my already compromised body. Instead of whining about my situation I used the tools IC had taught me. I wrote articles, research papers, and journaled as the release for my anxiety and fear. I called on my support network of other IC patients to check on me and pray for me. They rallied around me as I had them in their “dark night of the soul.”

Now disabled, I have the time to rest, to write, to read all the research, and to educate patients and health practitioners alike. I am more centered, aware of my body, alert to changes in it, open to new techniques, and hopeful that research will bring us the knowledge of what can be done to lessen our pain and treat this all-encompassing condition. May you breathe deeply and rest in the assurance that you are not alone.

Melanie Barton

Hope in Healing: My Faith is My Strength
9/15/2010

I am a survivor of interstitial cystitis. I have an unusual story of healing. There is hope. I hope you will find it in my story.

I had been diagnosed with IC (interstitial cystitis) by a urologist after many bladder infections (and even negative test results) and many consultations with doctors that ended with the words, “I don’t know how I can help you. The tests do not show anything wrong.” One doctor even went so far as to tell me it was all in my head. Not only at that point are you so miserable from the illness but now you question if there is something wrong with your mental state! Finding a urologist who knew about IC ten years ago was something short of a miracle. I have always thought of him as a God-send and an answer to prayer.

Then began the course of trying many types of treatments and a long process of waiting to see what worked. I would find that something would work for a while (maybe even up to six months) and then lose its effectiveness. This went on for several years, life like a roller-coaster of pain and hope, up and down all the time. I even sought out other doctors and researchers in the field for their opinion. It got to the point of interfering with my work, my family, and my life in general. Quality of life was low. One gets to the point of not wanting to go on if every night and day is miserable, always putting on an act that you can handle the situation while limping along and secretly feeling hopeless.

I have chosen hope rather than despair. In fact, I try to look at this situation from the perspective that I have a task set before me. There is purpose in the pain, and God never wastes a hurt. I am a survivor for a reason. I have been chosen as an instrument of healing and to share my story with others and to offer hope. My situation does not define me, but it did transform me. I felt a turning point one day when I heard words to a song that said “a hero lies in me.” But my hero-ship cannot be kept to myself, and it is not just for me. I can’t hold onto this experience as if it were only mine. My healing path has brought me to a place where I know that I have to share this with others, and I invite you to cross this bridge with me. An experience like this changes one’s outlook on life and life eternal. I have always been a believer, but now I feel called to minister to others who need to hear a message of hope for their health situations.

My message of hope is to not let your situation defeat you. There is a bridge to cross. Regardless of where you are in this continuum, it is important that you cross this bridge. Maybe you just need to start with taking a step toward it. Or maybe you are stuck in the middle and can’t seem to cross. Wherever you are, take a step farther and keep your eye on your personal light of hope.

Lori Arnold-Grine, OH

Now That’s Therapy: Kevin Noa
8/17/2010

When the pain arrived shortly after I turned 43 it was furious. I knew it was something serious, and I was right. Hell on Earth is a good description for what I would go through for next several years. After finally gaining a diagnosis of interstitial cystitis, the long and arduous suffering would challenge every aspect of my life. All the treatments and medications I took for the next few years did little to relieve my pain. These included both the pills and the series of instillations I went through.

There were many days as I struggled through my teaching schedule that I wanted to give up and abandon my career. However, the drive to keep trying to find the right combination of medications and the therapy my writing gave me helped me go forward. As I write in my e-book on IC, I tell all persons suffering to find therapies to pass the time and get your mind off the pain. "One of the things I always tell whatever audiences I speak in front of is that I can remember many Sundays when I would go to the library around 1 PM with my back and bladder really hurting. I would immediately go get the books or notes I needed and start to work. Before I knew it, at 4:45 PM they would be flashing the lights to tell everyone it was time to finish up and they were closing. For me this time went by like the snap of a finger. Now that’s therapy!"

I will have IC for fourteen years come this November. I suffered significantly with it for at least half that time. Now I am back to a mostly normal life. A life I can definitely handle all the ups and downs of without the burden of IC. After participating in last week’s webcast I urge all who suffer to, keep looking for answers, stay in close communication with your doctors and find yourself some therapies.

If you'd like to read my e-book, simply email me at Kcoach2000@aol.com.

Kevin Noa

Taking it One Day at a Time
7/13/2010

It was not too long ago that I turned 40. It's kind of funny to think that at the age of 39 my interstitial cystitis (IC) decided to rear its head. It started out as a weird, burning sensation down at the urethra. It wasn't painful to pee, but it definitely felt odd afterwards and my trips to the bathroom were increasing at a rapid rate. Night time was the worst. I used to be able to sleep on my stomach. It was the only way that I enjoyed sleeping, but I couldn't do that anymore—too much pain and too uncomfortable.

I thought maybe I was getting a urinary tract infection (UTI) so I went to the urgent care clinic where a urine culture showed no infection. But they thought that perhaps it was just the onslaught of a UTI so they gave me antibiotics but then a week after the medicine was gone, I started feeling all those weird sensations again. After 3 trips to the urgent care clinic and emergency room, I was referred to a urologist. That's when I started my internet search about my symptoms and learned about IC.

My urologist gave me information about IC at the office but wanted to do a hydrodistention and cystoscopy before diagnosing me. I remember visiting a gynecologist whose bio talked of studying IC so I set up an appointment with him as well. I told him my symptoms and showed him the results of an x-ray and ultrasound of my kidney area and ovaries. He, too, agreed that IC was rearing it's head. He recommended starting bladder instillations. He said we would do this once a week for a month and then get back together to discuss the findings.

I remember that first instillation. Ouch! The catheter really hurt going in but once the procedure was done I went home, each week there was less and less pain with the catheter. When I met with the doctor again I asked for a hydrodistention and cystoscopy to rule out cancer so we did that. As it turned out, I have Hunner's ulcers. My bladder had a huge looking stretch mark on it where the ulcers had eaten away at my bladder lining. That confirmed my diagnosis.

Since my diagnosis I have totally cut out chocolate and diet coke. I only drink water and try to eat as many whole, organic foods and drinks as possible. One of the hardest parts has been giving up chocolate (that was my drug of choice—just kidding). I also NEVER used to be a napper and had energy throughout the day. Now I find myself getting tired much quicker and napping more often than I used to. I try to keep my exercising low key, walking, elliptical, light weights. I take Elmiron 3 times a day and have been getting instillations once a week too. I have pain but I don't feel like I have the extreme amount of pain that some IC patients describe in their Facebook posts. So, I do feel lucky that I don't feel that pain but this disease still changes every aspect of your life.

I would encourage each patient to learn as much as possible about IC through the internet, talking with doctors, and other IC patients. Be your own advocate and do what you think is best for you. Don't let this disease rule you. Have the courage to take your life back as much as you can. Don't give up and honestly, share your disease with others. It's amazing how uneducated people are about our disease. More people need to be aware of what IC is. Now we see all kinds of gluten free products at the store. It would be great to start seeing more and more organic food choices (or IC food choices).

I never thought at the age of 40 that I would be prescribed a daily medication. I thought maybe at the age of 60, 65, but 40?! Really?! But, it is what it is. Once I learned about what the symptoms of IC were and started weeding out those negative foods and drinks (chocolate and diet coke) and I could feel the difference in how it affected my body and how I felt each day, it was easy. I know there is a long way to go, but I hope that the doctors can find a cure for this disease or at least pain medications to help those dealing with it. Until then, we have to take one day at a time.

Gretchen Barnett
Beaufort, SC

Living and Loving Life
6/17/2010

Pinpointing the exact moment that I got IC is like trying to guess the number of hairs on my head. As I look back it seems that as a small child I was predisposed to eating large amounts of sugar and I wet the bed later than I would like to admit. Over the years I suffered great sadness in my life, including an abusive relationship in my twenties. I feel that all of these things contributed to a general weakness in my body (and my spirit). I’ve also thought that maybe there is a genetic predisposition to acquiring IC as my mom has had Fibromyalgia and related diseases for over twenty years.

By the fall of 2004 my body became weaker as I looked out for everyone but myself and I pushed through a rigorous full time class load in college, along with working full time in a stressful sales job. I developed monthly yeast infections, bladder infections, and then I developed severe kidney pain. Although I went to see a doctor after the kidney pain developed, the doctor did not listen to my list of health concerns and a few weeks later I passed four kidney stones at home without any pain relief.

About a month after passing the kidney stones, I began to have indescribable vaginal pain that came and went and then eventually didn’t go away again. A few months later and I was shocked and scared to discover that along with the vaginal pain I developed bladder pain and a severe increase in the need to urinate. The final blow was when sexual intercourse became unbearably painful. After seeing scores of doctors and undergoing a multitude of painful and invasive tests, I was finally diagnosed with IC in the spring of 2005. Worse than the official diagnosis was the word: incurable. I was 27 years old and felt that my life had ended. My urologist laid out the rest of my life with IC: monthly bladder instillation treatments and a multitude of prescription drugs for overactive bladder, depression, and bladder pain. I listened to what the doctor said, but I wanted to retain my life before IC -not center my life around it.

Towards the end of 2005, I threw out the prescription drugs and began the IC elimination diet, and began searching alternative ways to overcome IC. I stayed on the elimination diet for four years and saw a lot of progress (although slow at times) from the diet so I added Chinese Medicine (under the care of a licensed Traditional Chinese Medicine Doctor), acupuncture, massage, yoga, meditation, rest, counseling, and many other health modalities, which supported my return to health in every aspect: physical, emotional, spiritual. The return to renewed health was long journey and sometimes lonely, but I will never regret my decision to become proactive about the choices in my life that affected my health.

Although I still have some residual symptoms of IC, I now live life with renewed energy and thankfulness for all that I learned from living with IC. I am happy to report that I kicked a lifelong addiction to sugar and I have committed to only putting into my body healthy foods and I will never again drink alcohol. I feel that everyone's journey with IC is unique and therefore treatments and experiences of living with IC are unique. But we are united through sharing our IC stories and through our commitment to support one another and to spread the word about IC.

Carin Willis from CO

I Have IC, But IC Doesn’t Have Me
5/19/2010

I was diagnosed in November of 2009 after having a cystoscopy (under anesthesia). But "it" all began in February of 2009 when I thought I had contracted yet another UTI. After taking antibiotics that just didn't seem to clear it up, I visited with my gynecologist who examined me and said "I think you might have something called interstitial cystitis". I thought to myself, what the heck is that?! So after we chatted for a while in his office and agreed that I would make an appointment with a gyno-urologist, I headed to the internet. This was not the best source for positive information! And after reading stories from others with IC, I began to think that I didn’t have it. I did not have pelvic pain. I had burning urination and sudden urges to urinate. I felt unsure. But after many doctor visits and tests, it was confirmed that I did indeed have IC.

At first I thought I would just crumble and lie in bed for weeks if not months. I felt as though my life as I knew it was over. No foods I loved. No more running. No bike riding. Nothing! But I did not let it get to me. In fact, it made me push harder to see what my body could handle. And I am happy to report that I run 5 miles per day 4 days per week, use the elliptical machine 3 days per week and weight train 3 days per week. I have yet to try riding a bike again for fear that it will be uncomfortable on my pelvic area, but I do plan to try rollerblading this summer.

As for food, well I still don’t eat a great variety of foods- I started the IC diet in March of 2009 and have not veered from it. I've been eating the same types of foods for over 1 year now. I try not to let that aspect of my life get to me. I just think of all of the people who are starving in the world and I am grateful that I have food at all!

Some days my symptoms are worse than others, but I can kind of predict which days they'll be. My IC seems to be directly affected by my menstrual cycle, so I know which weeks will be the awful ones. I have good hours and bad hours each day. But I've accepted that. I have friends and family members who suffer every day with other illnesses and diseases, so I consider myself fortunate that I can have some peace from my IC once in a while. I try to stay positive through running. It's sometimes tough once I get started, because I feel the urge to urinate, but once I get going, and the area seems to be numbed, the feeling goes away and I'm good to keep going! I think happy thoughts, I look down at my feet and am thankful for the body that I do have - that it allows me to still run free even if only for a few minutes!

I wouldn't wish IC on anyone, but it has given me hope that I will be a better person because of it. I have more compassion and sympathy toward others than I used to now that I’ve “walked a mile in their shoes.” I am fortunate enough to have a great doctor who is willing and able to help me through this journey and I know deep down inside of me that I will overcome this - maybe not physically, but mentally! I always tell myself, "I may have IC, but IC doesn't have me!"

Roxanne Beretta
Age 43

Becoming One with IC
4/12/2010

My journey with interstitial cystitis (IC) began when I was 25 years old and now I am 40.  I have held the reigns on my disease for almost 8 years, but I spent a rough 7 years in the dark searching for answers and living in pain.  Many doctors dismissed my symptoms.  At times I was paralyzed, drained, and hopeless.  I sometimes would reflect on all of the places I had been in my life before IC.  I left home, graduated from college, held jobs, and traveled in the US and abroad.  All the places my footprints had touched, now fading and incomplete.  When I was flaring with IC, my world would shrink and deflate like the air of life being sucked out of my being; me becoming a shriveled container.  IC removed all my desire to move about and experience life, to leave footprints anywhere else.  All I wanted to do was to wrap myself into a tiny ball, dissolve, and disappear – if that would make the pain dissolve.

During those years before I was diagnosed, there always seemed to be two images of me - one sick and one well - and I would always put forth the well image for others to see.  I parented, worked, and tried my best to live.  Then I started taking Elavil and Elmiron, medications I now consider my lifelines.  Without these medications, IC dominated and dictated my life – it was like I was on a leash with no freedom. In pain, a prisoner – living life on my captive’s terms.  These medications enabled me to exert control over my condition. The images of myself have now converged into one: a capable person, fully engaged in life and taking care of herself.  

IC has been empowering because it taught me not to settle until you have answers - that we as individuals are instrumental in advocating and taking care of ourselves.  It taught me about myself, how I take on challenges, how to embark on what at the time seemed to be a solo crusade, and to have a resolve and confidence in my thoughts and beliefs.  Today and everyday since, I am thankful for each moment I live without out my bladder being at the forefront of my thoughts, for each pain-free step I take, for each time that I can bend down to smell a flower and admire its simple beauty, and for the times I play, sing, and dance with my children.  Each moment that I am lost in music, focused on my breathing in a yoga class, absorbed in book, enjoying a tasty treat, I smile to myself, remembering a time when those moments were seemingly out of reach with an IC fortress built firmly around me.  Brick by brick, I have removed that wall and have torn it down.  No longer does IC define me or impose its boundaries around me – it has enabled me to cherish and embrace every moment in my life and I am so grateful for that.

Melanie Dubs

A Mother's Story
3/17/2010

My daughter, Mandy, was diagnosed with IC in 2007 at the age of 16. She had recurring symptoms of a bladder infection beginning at age 4, but her lab results almost always came back negative for UTI. The only comment made by her doctor about the frequency of her symptoms was to question whether she had been sexually abused. They began to treat us like they thought she was faking her symptoms and were reluctant to see her, but never referred her out to another doctor. Antibiotics never seemed to help, but honestly, I didn’t know any better. I trusted her doctors and began to wonder if I was overreacting or if she was exaggerating. She started skipping school, became depressed and rebellious, and her grades plummeted along with her health. When her lab tests came back showing blood in her urine but no sign of infection, I was told there was “not enough blood” to refer her to our local children’s hospital for further testing. At her age, pediatric urologists were hesitant to see her because she was so close to being 18 and adult urologists were hesitant to see her because she was not yet 18. I didn’t know what to do or where to go for help. 

My employer explained our situation to a friend of his whose father was a doctor and asked if he could help us get a referral. The very next day one of the best urologists in our area called and scheduled an appointment for her the following day. Mandy was his only patient under 50 years old. After reviewing her records, he said the only way to be sure about what was causing the symptoms was to go in and take a look in her bladder. It took only 10 minutes for him to say that it “looked like” severe IC. Within a month she was on her way to Stanford to see a doctor who helped her as much emotionally as physically. Finally someone understood what she had been going through and knew how to help. That changed everything. She learned to manage her diet and to recognize her triggers.

Living with IC she defied the odds by graduating high school on time with a 3.7 GPA and is currently attending college to become a medical assistant. She says the first person a patient comes in contact with can often make or break your visit to a doctor’s office or ER. That person needs to be someone who treats patients with compassion. She wants to be a medical assistance so she can be that person because she knows what it’s like to be a patient who isn’t shown much care and respect. I’ve had the privilege of watching my daughter blossom into a beautiful young woman who focuses on what’s right instead of what’s wrong and looks forward to where she’s going instead of looking back on where she’s been.   

Most of all I’m grateful for the extraordinary people who, when I was overwhelmed and losing hope, took a little of their time to help a girl they didn’t even know. Without exception they all said they sincerely felt that helping was the right thing to do because that’s what we’re here on earth to do – help one another. I believe they’re right…

Loretta Farnsworth
Mother of IC Patient

"LIFE'S SHORT, HAVE FUN"
2/17/2010

"I do everything I can on the days I feel good, and what I can on the days I don't." How did I come up with that statement? I'm not sure. I guess I just decided that IC wasn’t going to control every minute of my life.

I was diagnosed with IC in 1994 at the age of 33. I was a self-supporting, self-motivated female with goals and dreams to last a lifetime. I had never had a bladder infection, but every 3 or 4 months it would feel like I was having one. I was put on the medication for UTIs, but the tests always came back negative for infection. It was the spring of 1994 when I thought, “Something is not really right with my bladder.” I was lucky enough to find a urologist who was able to diagnose my problem through hydrodistention. He told me I had interstitial cystitis (IC) and I thought “Well, a little pill will take care of this…” I soon found out it wasn’t quite that simple. He told me IC was a disease what would progressively get worse. Within 2 to 3 months I had pain and frequency problems and I understood what he meant when he said the disease would get worse.

He referred me to the University of Oklahoma Health Science Center for further treatment. The center was 2 hours from my home since I lived in a rather rural area. I tried a lot of different treatments over the years. I also participated in a clinical trial—I thought I could maybe help others as well as myself. And through this whole process I learned something important about having a chronic illness: YOU have to take care of yourself. Find out everything you can about your illness and be your own biggest advocate and supporter. When I was first diagnosed there wasn't that much information available to patients. The ICA has so much more information now than in 1994. We are lucky to have them as a resource.

I believe that each day contains only what we can handle and we don't need to be concerned about more than today. I feel like I can say that because I know how hard it can be. I know how hard it is when you shower and can barely stand up afterwards. What it’s like to get all dressed-up for that special evening and then be too tired to attend. When I have a bad or down day, instead of thinking about how hard it is, I lie in bed and think about all the things I'm going to do when I feel GOOD. It is grace that gives us the ability, power and strength to handle whatever comes our way.

When we think about our illnesses and the future (sometimes with unanswered questions), we might feel overwhelmed. That's why I started saying “I will do everything I can on the days I feel good, and what I can on the days I don't." I've had days I could get on my jet ski and ride across the lake feeling totally in control and free and it’s these days that I concentrate on when I’m feeling down. A physician once told me "Life's short, have fun." I thought at the time he was crazy but, he was absolutely right. I have my up and down days, weeks, and months, but they are only temporary.

My most recent accomplishment was a graduate class I took in the spring of 2008. The class was 3 days a week, 50 miles round trip from my home. I finished in the top percentage of my class and I had not been to school in 25 years! Don't lose yourself to IC or any other illness you may have.

We will make it. Research will find the cure for IC. Hang in there!
Shawn C. Cummins

Instillations on-the-go!
1/19/2010

Got the traveling bug? Margaret Elizabeth (Mickey) Caughman Anderson offers her story of hope.

I have suffered with IC since before the doctors had a name for this disease. In 1958 I married my husband, Hal C Anderson, who is a pediatrician. After we married, I had chronic bladder infections and was always given an antibiotic. 

The light came though the end of the tunnel when I went to Dr. Robert Evans in Greensboro, NC. Who prescribed a treatment of Elmiron, bicarb, and Lidocaine as an instillation into my bladder. It helped so much I felt like I had even more hope. I still use that treatment today. After the treatment I take Pyridium. I take Neurontin and at night take Atarax for sleep purposes.

My husband and I do instillations at home every three days – it is amazing how this has helped me feel better. We’ve been to China, Jerusalem, South Africa, Europe, and we take all the necessary supplies and do the instillations while we travel.

Margaret Elizabeth (Mickey) Caughman Anderson


Finding hope and raising funds.
12/4/2009

My name is Lauren Snyder. There with me in the picture is my fiance, Michael Farreny, at a fundraiser we held for the ICA at the Silver Diner in Cherry Hill, New Jersey. I teach special-needs kids at a private, nonprofit school for children with disabilities. On a teacher's salary, I can't make substantial donations myself, but I can get people to pull together for a cause. The ICA became an important one for me from the time I got diagnosed.

 At first I didn't know I had IC. I had salmonella poisoning when I was in high school, which did some permanent damage to my gastrointestinal tract. In addition, I developed pelvic floor dysfunction. My gastroenterologist referred me  to a colorectal surgeon who thought I might also have something going on with my bladder. Sometime later, my physical therapist said she thought so too, and referred me to Kristene Whitmore, MD, in Philadelphia, which is only about 10 minutes away from Haddon Township, New Jersey, where I live.

Dr. Whitmore thought I had IC, and did a cytoscopy and hydrodistention. When I was in recovery they went out and told my mom that my bladder was in horrible condition! I don't know what I C was, other than what Dr. Whitmore's nurse practitioner Amy Rejba told me, which was a lot to take in. So, I started doing research online, the ICA came up, and I saw there was something I could join for this condition. I read everything on the site and went to every link. Then, I joined and got lots of  information about IC and the ICA Update. I've been a member for almost four years - since I was diagnosed.

In additions to medications, I have been getting Botox injections into the pelvic floor and bladder instillations. Because of my lower pain tolerance, I have to be knocked out for those. I always end up being out of work a lot longer because I have to be hospitalized, so I try to get my hospital visits done in the summer.

Working with IC is a challenge with the population of the kids that I teach because it's such a physical job. The kids have to be lifted and repositioned a lot. In addition, I'm a swim coah, but the chlorine in the pool aggravates my bladder, so I've had to knock off how many hours I'm in the pool. It's a pain.

Physically, I know I won't be able to do this my entire career. But my nurse practitioner Amy's not telling me to find a different job because she knows the kids are so important to me. They have very involved medical issues and very low cognitive abilities. I look at them, and I know it could be so much worse. One reason I think I'm doing well is because I get that reality check every day.

I really wanted to do something for special awareness because I know my friends, family, and even my mom, who's a nurse, never heard of IC before I was diagnosed. Lots of restaurants let people raise awareness and money for a cause, and in the current Cafe ICA e-newsletter you can read all about how we did it at the Silver Diner and get ideas about how you can do it too! I also keep raising awareness about IC on Facebook, where I made IC my feature cause. I hope you will too.

Lauren Snyder, NJ