Associated Conditions

Your allergies could be causing your IC/BPS flares. Many people with IC/BPS notice that that the sneezing, itchy eyes, and runny nose brought on by seasonal allergies worsen IC/BPS symptoms. IC/BPS experts have noticed too, commenting in courses and meetings that they get more calls and more patients coming into the office with flares when the snow is gone and the trees and flowers bloom. Research also supports a higher prevalence of seasonal allergies in IC/BPS patients compared with the general public.

Food allergies and sensitivities are also common with IC/BPS. Research links a handful of foods and drinks to IC/BPS flare-ups, including:

• Coffee, tea, soda, alcohol, and citrus juices including cranberry juice
• Foods and drinks with artificial sweeteners (aspartame and saccharin)
• Hot peppers and spicy foods.

Many patients report that other foods are also bothersome. The AUA clinical guideline recommends dietary changes as part of the IC/BPS treatment plan. Read more about eating with IC/BPS and making changes to your diet to help control IC/BPS symptoms.

For the latest information about seasonal allergies, check out the Allergy and Asthma Foundation of America. For updates on food allergies visit the Food Allergy & Anaphylaxis Network.

Foods with gluten can cause flares for some people with IC/BPS. Reports from patients suggest an increased prevalence of celiac disease among people with IC/BPS. Celiac disease is an immune reaction to gluten, a protein found in wheat, rye, and barley. Some medicines, vitamins, toothpastes, and lip balms also contain gluten. Both adults and children get this genetic condition, which may be triggered by a number of things including surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

Symptoms of celiac disease are often digestive problems such as abdominal bloating and pain, chronic diarrhea, vomiting, constipation, abnormal stool, and weight loss. Adults may also experience iron-deficiency anemia, fatigue, bone or joint pain, depression or anxiety, tingling numbness in the hands and feet, seizures, canker sores inside the mouth, rashes, and other symptoms.

Blood tests to diagnose celiac disease check for the presence of transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but symptoms persist, your doctor may recommend additional testing. The only treatment for celiac disease is a gluten-free diet.

Not all IC/BPS patients with gluten sensitivity have celiac disease. If your test for celiac disease is negative, you may still notice that gluten worsens IC/BPS symptoms. Use a process of trial and error to figure out which foods and how much of each food may be causing the IC/BPS flare.

For the latest information about celiac disease and gluten-free diets, please visit the Celiac Disease Foundation website.

A small subset of IC/BPS patients also have chronic fatigue syndrome (CFS). Though most at-risk group for CFS appears to be women, CFS strikes people in every age, racial, ethnic, and socioeconomic group.

As the name “chronic fatigue syndrome” suggests, this illness is accompanied by fatigue. However, it is not the kind of fatigue that one experiences after a particularly busy day or week, a sleepless night, or stressful events. It is a severe, incapacitating fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Although its name may seem to trivialize the illness as little more than tiredness, CFS brings with it a constellation of debilitating symptoms. The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months, including sleep difficulties, problems with concentration and short-term memory, flu-like symptoms, pain in the joints and muscles, tender lymph nodes, sore throat, and headache. A distinctive hallmark of the illness is “postexertional malaise,” a worsening of symptoms following physical or mental exertion that can require an extended recovery time.

The severity of CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, CFS has a profound impact. About 25 percent of people with CFS are disabled by the illness, and there is often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges of CFS.

For the latest information about CFS, visit the CFIDS Association of America website.

Chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) is a condition in men that is similar to IC/BPS. IC/BPS in men may be mistaken for chronic prostatitis/chronic pelvic pain syndrome.

There are four major types of prostatitis. Some researchers believe that types IIIA and IIIB may in fact be interstitial cystitis because the symptoms are similar to those of IC/BPS, and many patients respond best to IC/BPS therapies:

• Type I: Acute Bacterial Prostatitis—Caused by bacteria and treated with antibiotics men have severe urinary tract infections that may be accompanied by high fever, chills, and even the inability to urinate.
• Type II: Chronic Bacterial Prostatitis—Typified by recurrent urinary tract infections an infection within the prostate gland causes the symptoms.
• Type III A and III B: Chronic Non-Bacterial Prostatitis (CP/CPPS)—Type IIIA signs of prostate inflammation are present, but no obvious infection is found. Type IIIB symptoms of bacterial prostatitis are present, with no evidence of inflammation.
• Type IV: Asymptomatic Inflammatory Prostatitis—Signs of inflammation within the prostate, however the patient experiences no symptoms.

For the latest information about chronic prostatitis, visit the Prostatitis Foundation and Urologic Chronic Pelvic Pain Syndrome Society (UCPPS) websites.

Constipation is a common problem for everyone, particularly people with IC/BPS. Not only does it cause discomfort, for many IC/BPS patients it can increase IC/BPS symptoms such as urgency and frequency by causing additional pressure against the bladder.  Many things may cause constipation, including:

• Low fiber dietary patterns.
• Lifestyle factors, such as low activity level.
• Other health problems (pelvic floor dysfunction and irritable bowel syndrome).
• Medicines such as antidepressents and opioids.
• Some Nutrition supplements such as iron and calcium.

For many people, constipation may be due to more than one of the above causes. Figuring out the underlying reason your bowels are irregular is key to getting the right treatment. 

Tips for Increasing Fiber

How do you know if you are getting enough fiber? The Academy of Nutrition and Dietetics recommends 25 to 38 grams of fiber daily. Check out the list of IC-friendly sources of fiber.

If you’re not getting enough fiber, use the list to choose foods to add to increase your fiber intake. Check out the serving size for each of these items. You may find it helpful to measure quantities to get a sense of how many servings you typically eat. Two items that some people may find helpful for irregularity are a small glass of prune juice daily and 1-2 tablespoon flax (flaxseed, flaxmeal, or flax oil) each day.  (Make sure flax seed is ground to get the most nutritional value.)

When you are increasing fiber, you must make sure you drink enough fluids. Increasing fiber without getting enough liquids can make constipation worse. A rule of thumb: the more fiber you consumer, the more water you need.

Being Active

Inactivity can also lead to irregularity. It is important to try to get some activity each day. If IC/BPS is preventing you from being active, ask your doctor for a consult with a physical therapist (PT), trained in treating people with chronic pelvic pain. A PT can help you create an exercise program. In addition, PT’s can teach you lower abdominal massage techniques that help to encourage bowel movements.

Laxatives

If increasing fiber, fluid, and activity do not help, ask your doctor about taking a laxative. There are different types of laxatives. Some patients require a combination of laxatives. For example, you may need to take both: one to stimulate bowel movements and a different one to soften the stool. Though the research is limiting, initial findings suggest that probiotics may also be helpful. Talk with your doctor about this option as well.

Opioid-induced Constipation (OIC)

Constipation as a result of opioid pain management is called opioid-induced constipation (OIC).  This type of constipation differs from normal constipation in both severity and aggressiveness of treatments.  OIC is the most common and challenging side effect of opioid pain-management. The World Institute of PainPathways Magazine, in partnership with drug manufacturer AstraZeneca recently released the findings of a 6 month survey they conducted with non-cancer pain patients and the results may surprise you:

1. Patients found that the sooner they spoke to their physician about their symptoms, the better they were able to manage them. It is crucial that both patients and physicians get over their embarrassment about discussing OIC, because 1/3 of doctors do not mention it as a side effect, and 80% of patients said they were not comfortable talking to their doctor about OIC.
2. 90% of patients that start taking less or stop taking their opioid medication due so because of OIC.
3. Current OIC literature reports depression in 11-19% of users; this survey shows depression to be an issue in almost 50% of the respondents. Instead of the standard Constipation-Quality of Life questionnaire tool used by physicians, this survey asked about sexual intimacy and diet. Readers also reported embarrassment, low self-esteem, social isolation, anger, frustration and irritability in relation to OIC.

IC/BPS and endometriosis have been dubbed the “evil twins.” Like IC/BPS, endometriosis affects girls and women. Also like IC/BPS, the cause of endometriosis is not known with certainty, but a number of theories have been advanced.

In “endo,” as it is called, tissue from the inner lining of the uterus (endometrium) is found outside the uterus, in other areas of the body. In these locations outside the uterus, the endometrial tissue develops into what are called “nodules,” “tumors,” “lesions,” “implants,” or “growths.” These growths can cause pain, infertility, and other problems.

The most common locations of endometrial growths are in the abdomen—involving the ovaries, the fallopian tubes, the ligaments supporting the uterus, the perineum (area between the vagina and the rectum), the outer surface of the uterus, and the lining of the pelvic cavity. Sometimes the growths are also found in abdominal surgery scars, on the intestines or in the rectum, or on the bladder, vagina, cervix, or vulva. Endometrial growths have also been found outside the abdomen, in the lungs, arms, thighs, and other locations, but this is not common. Like the lining of the uterus, endometrial growths usually respond to the hormones of the menstrual cycle. They build up tissue each month and then break down. The result is internal bleeding, degeneration of the blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue (adhesions).

Endometriosis research has shown that environmental toxins such as dioxin and PCBs, which act like hormones in the body and damage the immune system, can cause endometriosis.

For the latest information about endometriosis, visit the Endometriosis Association website.

A subset of IC/BPS patients also have fibromyalgia (FM), a chronic pain disorder with a multitude of symptoms. Although 80 to 90 percent of those affected are women, men and children can have fibromyalgia, too. The cause of FM is not known, but many researchers believe that FM is the result of abnormal pain processing resulting from “central sensitization.”

The theory is that chronic pain actually changes the brain’s sensitivity to pain, making people feel pain from stimuli that would not normally be painful. FM patients seem to have changes in nerve-signaling chemicals and nervous system-related hormones. There is also a sensory hypersensitivity which not only causes a greater sensitivity to pain but higher levels of sensitivity to light, noise, and smell. (Research has found that IC/BPS patients are “super tasters.” Perhaps the enhanced taste buds relate to the hypersensitivity of smell?)

A number of scientific studies have shown that FM patients have abnormal blood flow to the thalamus region of the brain, abnormalities in the hypothalamic-pituitary-adrenal axis (the “fight or flight” system), low levels of serotonin and tryptophan, and abnormalities in immune system signaling. Recent studies also show that some people may have a genetic predisposition to FM.

For the latest information about FM, visit the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) website.

About one-third of IC/BPS patients have irritable bowel syndrome (IBS).  IBS is a functional bowel disorder in which abdominal pain or discomfort is associated with defecation or a change in bowel habits. The cause of IBS is not completely understood. Many factors may contribute to symptoms, which vary from person to person.

IBS is a complex motor and sensory disorder. It is very common and in addition to IC can overlap with other conditions. IBS diagnosis is made primarily by well-defined symptoms. Effective diagnosis and treatment starts with the recognition of the validity of symptom complaints. If you have cramping, abdominal pain, bloating, gas, diarrhea and constipation you may have IBS.

The changes in normal function appear to be due, in part, to disturbances affecting the normal movement (motility) of muscles in the intestines. The muscle contractions can be influenced by several factors, such as stretching or distention, hormones, and stress. Alterations in the sensitivity of the nerves in the gut, and a dysregulation in the way the brain controls these functions, are other factors contributing to the pain and other symptoms of IBS.

If you have any of these symptoms, talk with your IC/BPS healthcare provider. A referral to a specialist to evaluate you for IBS may be required. Setting realistic treatment goals that fit individual needs is an important step. A strong partnership between a knowledgeable patient and an empathetic, knowledgeable healthcare provider can produce significant improvement and control over symptoms for most individuals with IC/BPS and IBS.

For the latest information about IBS, visit the International Foundation for Functional Gastrointestinal Disorders (IFFGD) website.

Research has found that IC/BPS patients are 30 times more likely than the general population to have systemic lupus erythematosus (SLE).

As with IC/BPS, the cause of lupus is not known. It is more common in women and prevalence is greater among African-American, Hispanic, Asian and Native American women. Lupus is an immune system attack on healthy cells resulting in joint pain or swelling, muscle pain, fever with no known cause and the red “butterfly rash” on the face. It can damage joints, skin, blood vessels and organs.

There are several forms of lupus. The most common form is systemic lupus erythematosus, which affects many parts of the body. Discoid lupus causes a rash that doesn’t go away. Subacute cutaneous lupus causes sores after exposure to sunlight.  Another type of lupus is caused by certain medicines.

There is no one test to diagnose lupus, and it may take months or years to make the diagnosis. There is no cure for lupus, but medicines and lifestyle changes can help to control the symptoms.

For the latest information about lupus, please visit the Lupus Foundation website.

Many people with IC/BPS have problems with the group of muscles in the lower pelvic area and develop a condition called pelvic floor dysfunction (PFD). If you have IC/BPS and a poor urine stream, feel the need to push or bear down to urinate, and have painful intercourse, you may have PFD. Treating PFD may be very helpful in reducing symptoms and pain for some IC/BPS patients—most patients see improvement after several weeks of therapy.

Kegel exercises, frequently used to treat incontinence, may make both IC/BPS and PFD symptoms worsen.

What is the pelvic floor?

The “pelvic floor” refers to a group of muscles that attach to the front, back, and sides of the pelvic bone and sacrum (the large fused bone at the bottom of your spine, just above the tailbone). Like a sling or hammock, these muscles support the organs in the pelvis, including the bladder, uterus or prostate, and rectum. They also wrap around your urethra, rectum, and vagina (in women).

Coordinated contracting and relaxing of these muscles controls bowel and bladder functions—the pelvic floor must relax to allow for urination, bowel movements, and, in women, sexual intercourse.

What is pelvic floor dysfunction?

In IC/BPS patients, PFD is usually related to the presence of too much tension (or high-tone), the opposite of the too-relaxed state (or low-tone) that contributes to incontinence. However, sometimes IC/BPS patients with PFD can have a combination of muscles that are too tense and too relaxed.

What are the symptoms of PFD?

Symptoms of PFD include:

• Urinary urgency, frequency, hesitancy, stopping and starting of urine stream, painful urination, or incomplete emptying
• Constipation, straining, pain with bowel movements
• Unexplained pain in the low back, pelvic region, genital area, or rectum
• Pain during or after intercourse, orgasm, or sexual stimulation
• Uncoordinated muscle contractions causing the pelvic floor muscles to spasm

Side effects of certain medicines commonly used to treat IC/BPS, such as tricyclic antidepressants (amitriptyline, imipramine, and others), may worsen PFD symptoms. Ask your healthcare provider if your medicines may be contributing to your symptoms.

How is PFD diagnosed?

Physicians or physical therapists (PT) who are specially trained in treating PFD diagnose the condition during a physical examination. Using external and internal “hands-on” or manual techniques to evaluate the function of the pelvic floor muscles, they can assess your ability to contract and relax these muscles.

Bones and muscles of your lower back, hips, and sacroiliac joint can stress your pelvic floor muscles. Your doctor or PT will first check externally and internally for problems such as muscle spasms, muscle knots, and weakness or sacroiliac misalignment (where your sacrum and upper hipbones meet).

If an internal examination is too uncomfortable for you, your doctor or physical therapist may use externally placed electrodes, placed on the perineum (area between the vagina and rectum in women/testicles and rectum in men) and/or sacrum (a triangular bone at the base of your spine) to measure whether you are able to effectively contract and relax your pelvic floor muscles.

Another way to measure pelvic floor contractions is with a perineometer, a small, tampon-like sensing device placed into the vagina or rectum.

How do I know if I have PFD, IC/BPS, or both?

Currently there is no surefire way to distinguish PFD from IC/BPS, and oftentimes patients have both conditions. Some healthcare providers examine pelvic floor muscles externally and internally to gauge their tightness (tightness indicates PFD). Other IC/BPS and PFD experts, like ICA Medical Advisory Board member, Robert Moldwin, MD, perform a lidocaine challenge. By instilling lidocaine into the bladder, Dr. Moldwin determines whether your pain is coming from your bladder, which would indicate IC/BPS.

How is PFD treated?

The goal of PFD therapy for IC/BPS patients is to relax these muscles and avoid stressing them. Treatment usually combines self-care, medicines, physical therapy, and home exercise.

• Self-Care—Avoid pushing or straining when urinating and ask your healthcare provider about how to treat constipation. Relaxing the muscles in the pelvic floor area overall is important. Using methods such as warm baths at least twice a day is helpful.
• Medicines—Low doses of muscle relaxants such as diazepam (Valium), 2 mg three times a day, may be helpful. Maintaining good posture to keep pressure off your bladder and pelvic organs and using stretching or other techniques such as yoga to avoid tightening and spasms in the other pelvic muscles, also help PFD therapy to succeed.
• Physical therapy—A physical therapist specially trained in pelvic floor rehabilitation may take the following steps to help you obtain relief from your PFD:
  • External and internal evaluation of your pelvis
  • External and internal manual therapy
  • Application of various devices to help relax your pelvic floor
  • Training in home exercise and therapy

External and internal manual therapy

The therapist may do manual therapy or massage both externally and internally to stabilize your pelvis before using other kinds of treatment. Manual therapy takes time and patience, and may require one to three sessions per week, depending on the technique used and your response to treatment. You may feel worse initially. However, many patients see improvement after six to eight weeks.

For internal massage, your PT may insert a finger into the vagina or rectum and massage the muscles and connective tissue directly. A frequently used technique is “Thiele stripping,” in which your therapist finds a trigger point by feeling a twitch in the muscle underneath, exercising it using a circular motion, and then putting pressure on it to help relax it, repeating the process until the muscle starts to release. Internal massage can also help release nerves. Sometimes, anesthetics can be injected into these trigger points. PTs may do this in a few states, but in most states, a doctor or nurse must administer injections.

If there is too much discomfort with internal therapy techniques, your PT may start with external techniques to help you begin to relax these muscles, including:

• Skin rolling
• Deep tissue massage, often called “myofascial release”
• Trigger-point therapy to release tight spots or “knots”
• Nerve release
• Joint mobilization

Application of various devices and therapies to help relax your pelvic floor

PTs also use a variety of devices and therapies to help you learn to relax your pelvic floor or to treat your pelvic pain directly.

• Biofeedback uses electrodes placed on your body (on the perineum and/or the area around the anus) or probes inserted in the vagina or rectum to sense the degree of tenseness in your pelvic floor muscles. Results displayed on a computer or other device provide cues to help you learn to relax those muscles. Usually, patients feel relief after six to eight weeks of therapy. You may be able to buy or rent a unit to use at home.
• Electrical stimulation uses a small probe inserted into the vagina or rectum to stimulate your pelvic floor muscles, helping desensitize nerves and causing muscles to contract and relax. Stimulation through electrodes placed on your body may calm pain and spasms. Different kinds of electrical stimulation devices are available for home use, both for internal stimulation with a probe or for external stimulation, such as a transcutaneous electrical nerve stimulation (TENS) or similar unit, to ease pain.
• Interferential therapy is a kind of electrical stimulation delivered from electrodes placed on the skin. The impulses “interfere” with each other at the point of pain deep in tissues and can replace and relieve the sensations of spasm. Home units are available.
• Ultrasound uses high-frequency sound waves applied through a wand or probe on your skin to produce an internal image or to help treat pain. Real-time ultrasound can let you see your pelvic floor muscles functioning and help you learn to relax them. Therapeutic ultrasound uses sound waves to produce deep warmth that may help reduce spasm and increase blood flow or, on a nonthermal setting, may promote healing and reduce inflammation.
• Cold laser applies low-intensity laser light to the tissue and may help with pain, inflammation, and wound healing. Some devices have FDA approval for temporary relief of minor muscle aches, joint pain and stiffness, and for relaxation of muscle spasm and increasing local blood flow.

Home exercise and therapy is also a mainstay of PFD rehabilitation. Because the goal of PFD therapy is to learn to control and, especially, relax the pelvic floor, therapists will teach you techniques for use at home to build on the therapies they do in their offices. This usually begins with general relaxation, stretching the leg and back muscles, maintaining good posture, and visualization—part of learning to sense your pelvic floor muscles and to relax them.

Research, pioneered by Dr. Stanley Antolak, supports a link between IC/BPS and pudendal neuralgia (PN), a painful nerve inflammation. Pudendal neuralgia can sometimes look similar to IC/BPS when there is no IC/BPS, or IC/BPS and pudendal neuralgia can exist at the same time in a patient.

Overlapping symptoms include pelvic pain, sexual dysfunction, and difficulty with urination. PN patients may also have difficulty with defecation and a feeling that a foreign object may be in the body. Pain, typically in the perineal, rectal, and the clitoral areas in women and in the penis in men, may be less severe early in the day and may subside when the patient lies down or stands up.

Also referred to as “cyclist’s syndrome,” “pudendal canal syndrome,” or “Alcock’s syndrome,” PN can be triggered by bicycling, squatting exercise, or direct falls on the tailbone. Triggers also include repeated vaginal infections and chronic constipation, as well as secondary trauma due to childbirth, surgery, and bio-mechanical abnormalities (e.g., sacro-iliac joint dysfunction or pelvic floor dysfunction).

As in IC/BPS, diagnosis is made through a process of ruling out other conditions. Many patients find that nerve blocks completely relieve their symptoms. Dr. Antolak, who launched the PN and IC/BPS overlap research during his practice at a major clinic in Rochester, Minnesota, is now part of the MAPS Pain Clinic in Edina, Minnesota.

For the latest information on pudendal neuralgia, please visit the Society for Pudendal Neuralgia (SPuN) website.

Research about the overlap of IC/BPS and Sjogren’s Syndrome is very limited. Care reports are beginning to pop up in the clinical literature. And, the Social Security Administration (SSA) lists Sjogren’s Syndrome in the Social Security Disability Insurance guidelines and highlights IC/BPS as one of many overlapping conditions experienced by people with Sjogren’s.

Sjogren’s Syndrome is an autoimmune disease that causes dryness in your mouth and eyes. It can also cause dryness in your nose, throat and skin, and affect your joints, lungs, kidneys, blood vessels, digestive organs and nerves. In Sjogren’s syndrome, your immune system mistakenly attacks the glands in your body that make tears and saliva.

Sjogren’s Syndrome is more common in women and people over 40. Treatment focuses on relieving symptoms such as dry mouth and dry eyes.

For the latest information on Sjogrens, please visit the Sjogren’s Syndrome Foundation website.

A subset of IC/BPS patients has vulvar pain known as vulvodynia. An alternative spelling is vulvadynia.

Vulvodynia is chronic vulvar pain without an identifiable cause. Vulvodynia affects women of all ages, beginning as early as adolescence. According to a Harvard study funded by the National Institutes of Health (NIH), almost 16 percent of US women suffer from vulvodynia at some point during their lives, with most reporting ongoing pain for many years. According to the study, symptoms are likely to begin between the ages of 18 and 25. Although it once was believed to affect primarily Caucasian women, several recent studies have shown that African-American and Hispanic women are equally likely to develop vulvodynia.

Symptoms of IC/BPS and symptoms of vulvodynia can overlap. The most commonly reported symptom of vulvodynia is a burning sensation, but some women report stinging, stabbing, irritation and/or rawness. The severity of the condition ranges from mild discomfort to excruciating, disabling pain. Tell your IC/BPS healthcare providers about these symptoms as well as your bladder-related symptoms. This information helps with the IC/BPS and vulvodynia diagnosis process.

The two subtypes of vulvodynia (which sometimes co-exist) are:

• Generalized vulvodynia—Women with generalized vulvodynia typically have pain in more than one vulvar area that sometimes radiates to the inner thighs and the buttocks. In generalized vulvodynia, the pain is spontaneous and relatively constant, although there may be occasional periods of relief. Vulvar pressure, as with sitting, exacerbates symptoms.
• Vulvar vestibulitis syndrome—Women with vulvar vestibulitis syndrome experience pain primarily when pressure is applied to the vulvar vestibule (area surrounding the opening of the vagina) as during tampon insertion, sexual intercourse, or a gynecological exam.

For the latest information about vulvodynia, visit the National Vulvodynia Association (NVA) website.