Anyone Can Get IC

“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.

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

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

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

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

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 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 been 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.

Catherine Horine, IL

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.

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 table 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

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.

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

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

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

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

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

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

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

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

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

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.

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.

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

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

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

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

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

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 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

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

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.   

Loretta Farnsworth
Mother of IC Patient

"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

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

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