Tips to Cope with Interstitial Cystitis

It is believed that Interstitial Cystitis (IC) is a chronic disease with no treatment or cure. However do not get disheartened. There are many who go into remission, and often with proper treatment and care the patient can remain symptom free for years. Here are the things you need to do after getting diagnosed with IC. The list has been prepared on the basis of my personal experience and should not be considered a medical theory.  This is what I did after I was diagnosed with IC.

Attitude: IC is incurable they say but do not get disheartened. Change your attitude and say “I Can” loudly. This will help you go a long way. The moment you send signals to your brain that you can heal yourself; your body also reacts positively.

      Research, Research, Research: This is what I did. I researched extensively both online and offline. I read as much as possible regarding this disease. It helped me get a very clear perspective regarding what I was going through. I read about the symptoms, precautions, treatment and even alternative ways to treat IC. I would be sharing all those eventually in this blog.

      Find a Good Urologist: It is very important to find a good doctor. A doctor who is compassionate and empathetic. One who is ready to listen to you and considers you a priority. I personally do not like doctors who are dismissive and doesn’t encourage the patient to ask questions.

         

          Identify your triggers:  It is very important to identify your triggers. I will discuss more elaborately about triggers later on. The few common triggers are stress, certain foods, hormonal changes, intercourse and strenuous physical activity.  Once you identify what aggravates your symptoms try and avoid them.

      

      Avoid: Citrus fruits, Coffee, tea, alcohol, tomatoes, raw onions, sugar, processed foods, sauces and pickles. But this list is not exhaustive. Every individual has his/her unique trigger food that you need to identify. Your doctor may not give you an exhaustive list of foods to avoid. Therefore it is very important that you start avoiding food that you think are escalating your symptoms. Follow this chart to identify your trigger food. Try eating an alkaline diet.

      

       Medicine: Take your medicines, however IC being a difficult disease not all medicine will suit you. Therefore you and your doctor will have to work hard to pinpoint the medicine that work for you. For example I responded well to pentosan but many don’t. So keep tracking.

            Try home remedies: I try quite a few home remedies to soothe my IC along with taking regular medicines. One is baking soda. Avoid it if you have high blood pressure. You can try half teaspoon of baking soda (sodium bicarbonate) in a glass of water whenever you feel your symptoms are flaring up. It gives immediate relief.

Exercise: If you are in pain it is difficult to think of exercising but try doing low intensity exercises like walking, yoga and stretching.

Meditate: Try breathing exercises and prayers to help calm down. This will help control your stress level.

 Sunshine: One day when I was crying in pain my mom-in-law advised me to go and soak in the sun. It helped to soothe me. Now I have made it a habit to sit in the sun for half an hour each day. It helps to balance my vitamin D level and also soothes me.

Join a Support Group: In India there are no proper registered support group. However there are numerous online support groups that you can join. The Facebook support group that I joined helped me tremendously in this lonely battle. So search for a group that suits you and join. 

Diagnosing Interstitial Cystitis in India

The biggest hurdle for any IC patient in India is to get diagnosed. In most cases patients remain un-diagnosed or misdiagnosed. Therefore if you have symptoms like lower abdominal pain for more than few weeks which increases when your bladder is full, pelvic pain, frequent urination often as many as 20 times and urgency to pass urine. You might be suffering from interstitial cystitis. You might have associated symptoms like constant pressure in the pelvic region, burning sensation, burning while passing urine, painful intercourse, back pain and burning feet. If you have been suffering from the above mentioned symptoms then the best way is to visit an Urologist.

Unlike a urinary tract infection, interstitial cystitis cannot be diagnosed with a simple urinalysis or urine culture. Rather, it’s a diagnosis of exclusion, which means that the urologist will first take a thorough history and then perform tests designed to rule out other diseases. These include infection, bladder stones, bladder cancer, kidney disease, multiple sclerosis, endometriosis, and sexually transmitted diseases. As IC has overlapping symptoms with other diseases the doctor would follow a process of elimination to establish IC.

Pelvic Exam: First the doctor would do a pelvic exam. During a pelvic exam, the doctor examines external genitals, vagina and cervix and feels the abdomen to assess internal pelvic organs.

Urine Tests: The urologist would initially ask you to do urine routine test and urine culture. This would help them to rule out Urinary Tract Infection.

USG of KUB: Ultrasonography (USG) of the KUB (Kidney, urethras, bladders) helps them to rule out any abnormality in the KUB. It would also help the doctor see the post void urine volume.

Cystoscopy with hydrodistension: The doctor may possibly do a procedure called cystoscopy with hydrodistension, which is performed under general anesthesia. In cystoscopy, the doctor inserts a thin tube with a tiny camera (cystoscope) through the urethra, which allows the doctor to see the lining of bladder. Along with cystoscopy, your doctor may inject liquid into your bladder to measure your bladder capacity. Your doctor may perform this procedure, known as hydrodistention, after you've been numbed with an anesthetic medication to make you more comfortable. Interestingly, distending the bladder can itself be therapeutic. About half of patients get some relief for about three months after the procedure. The most common sign of interstitial cystitis is red pinpoint spots of blood (glomerulations) covering much of the bladder wall surface. Sometimes there are scars or lesions called Hunner’s ulcers, accompanied by low bladder capacity due to tissue stiffening (fibrosis).

Biopsy: During cystoscopy, the doctor may take a biopsy (tissue sample) of the bladder to rule out bladder cancer and look for evidence of the mast cells that indicate an allergic reaction or autoimmune response.

Urodynamic Studies: An urodynamic study is not essential to diagnose IC, however it remains important for the confirmation of the clinical symptoms of IC. An urodynamic study may also be useful in selecting the therapeutic modalities for IC.

Potassium Chloride Sensitivity Test: Few doctors may also want to do a potassium chloride sensitivity test. In this test, your doctor places two solutions — water and potassium chloride — into your bladder, one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with normal bladders can't tell the difference between the two solutions.

Why diagnosing Interstitial Cystitis is difficult

Interstitial Cystitis (IC) is often considered a rare disease. However IC is not really a rare disease but a neglected disease which doesn’t get diagnosed easily or worse gets misdiagnosed. In India as the awareness is very low many people just live with it without ever getting diagnosed. Many patients start believing that IC is part of the normal progression of life.

About 90% of IC patients are female. Most women go to a gynaecologist whenever they have any issue “down under” and as the awareness of IC among gynaecologists are abysmal in maximum cases the patient gets misdiagnosed. Even general practitioners are not able to diagnose it properly and often confuse it with some other disease.

Clinically it is very difficult to ascertain IC. Even for an urologist it is not an easy task and often they have to conclude IC through a process of elimination. Once they eliminate other diseases they can confirm it as IC. The diseases with which IC is commonly confused or rather the diseases which should be ruled out to confirm IC are as follows:

Urinary Tract Infection (UTI) – This is the commonest disease that IC is confused with. The patients of IC suffer from ALL the symptoms of UTI like frequency, urgency, burning sensation while passing urine and lower abdominal pain. Therefore in most cases when an IC patient goes to a doctor he/she is prescribed medicines of UTI especially antibiotics.

Endometriosis- IC is also commonly confused with endometriosis. In Endometriosis a patient suffers from chronic pelvic pain which increases during menstruation. Similarly an IC patient also suffers from pelvic pain which flares up during menstruation. Patients of endometriosis feel pain during sex; similarly IC patients also feel pain.

Urogenital Tuberculosis- The symptoms of this disease include urinary frequency, painful urination or dysuria and loin discomfort. All symptoms are similar to IC symptoms. In India tuberculosis is more common therefore earlier IC patients were treated as TB patients.

Urethritis- Here the symptoms again include painful or difficult urination, burning urethra and sore urethra.

Vaginitis or vulvovaginitis - Many symptoms of Vaginitis overlaps with IC like vaginal irritation and inflammation, painful sexual intercourse and painful urination.

Vulvodynia- Pain is the most notable symptom of vulvodynia, and can be characterized as a burning, stinging, irritation or sharp pain that occurs in the vulva and entrance to the vagina. It may be constant, intermittent or happen only when the vulva is touched. It can occur during or after sexual activity, when tampons are inserted, or when prolonged pressure is applied to the vulva, such as during sitting, bike riding, or horseback riding. Even an IC patient suffers from these symptoms.

Bladder Cancer- Even though the most common symptom for bladder cancer is blood in the urine however there are other symptoms which mimic IC like  pain during urination, frequent urination, or feeling the need to urinate without being able to do so and pelvic pain.

Neurogenic Bladder- IC is also confused with neurogenic bladder as patients are unable to void properly and often have difficulty in urination.

Fibromyalgia- Patients suffering from this disease also suffer from chronic pain, bladder disorder, sleep disturbance and nerve pain.

Vitamin B12 deficiency- IC patients often suffer from burning sensation in the feet. A person who has Vitamin B12 deficiency also suffer from this therefore often an IC patient is given vitamin B12.

Psychological problem- In extreme cases when medical practitioners are unable to find any disease they consider the patient is merely imagining the pain and treat them as psychiatric patients.

The symptoms of interstitial cystitis overlap with many other diseases. So it is not easy to pinpoint IC so easily. A patient can therefore suffer from any other disease from the above mentioned instead of IC, or a patient can suffer from IC and none of the above, or a patient can suffer from IC and any or few of the above. A doctor has to take into cognizance a proper algorithm to ascertain IC. So even for a doctor confirming IC is not easy.