Interstitial Cystitis An Orphan Disease #writebravely

Today I’m happy to have Balaka Basu guest post here today. She shares her painful journey with Interstitial Cystitis An Orphan Disease.

By not letting her illness keep her down, but using it to help others, Balaka to me epitomizes this :

“You must not let anyone define your limits because of where you come from. Your only limit is your soul.”

Interstitial Cystitis An Orphan Disease

I first had Urinary Tract Infection (UTI) three days after my wedding. I was told it was Honeymoon Cystitis. Nevertheless, my honeymoon with cystitis continued and I started getting UTIs very frequently. A course of antibiotics alleviated the symptoms but it came back after few months or a year. Things got worse when I started getting UTIs almost every 15 days and even antibiotics stopped working.

At this stage, I was going to gynaecologists. After not getting relief by the treatment of the first gynaecologist, I went to at least three more gynaecologists, all of whom said I had UTI and gave me antibiotics and asked me to take cranberry juice (which caused a further flare up). No medicine gave me relief. I was getting frustrated and even the doctors were getting frustrated. Then one particular gynaecologist, who is pretty well known, told me that my problem was nothing but a figment of my imagination.

I started staying home all day, going to the bathroom every half an hour and most of the days waking up with severe abdominal pain and urethral burning. I love to travel however travelling became my biggest concern. I stopped travelling by car or bus and  preferred trains or airplanes. During these journeys, I used to exchange seats with one near to the washroom. I was exhausted and in pain 24/7.

I always had a weird belief that urologists are nothing but the male version of a gynaecologist. Just like a male patient would never go to a gynaecologist a female patient shouldn’t go to a urologist. Therefore until things got drastically worse I never felt it necessary to go to a Urologist and kept visiting my gynaecologist. I am sure many women think likewise.  I finally went to a urologist. Thank God I went!

My urologists did quite a few tests – Cystoscopy and Urodynamics Studies and at the end concluded that I had Interstitial Cystitis (IC). I was put on Pentosan Polysulphate the only medicine that works for IC.

Interstitial Cystitis An Orphan Disease

Interstitial Cystitis or Bladder Pain Syndrome is an incurable chronic condition. It is primarily an inflammation of the bladder. The symptoms are overlapping with Lower Urinary Tract Infection and few other diseases often making it difficult to diagnose. Experts vary on their definition and nomenclature of this disease. Many feel that it might be several diseases instead of one.

What are the signs and symptoms of IC?

• UTI like symptoms without any infection
• A persistent, urgent need to urinate
• Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis may urinate as often as 60-80 times a day
• Pain in the pelvis or between the vagina and anus in women or between the scrotum and anus in men (perineum)
• Burning urethra, clitoris and vulva(vagina)
• Chronic pelvic pain
• Pain or discomfort while the bladder fills and relief after urinating
• Pain during or after sexual intercourse
• Anal and vaginal discomfort

What to do if you get any of the above symptoms?

If you feel any of the above symptoms for more than 6 weeks immediately consult a doctor, preferably a Urologist or a UroGynaecologist.  General Physicians and Gynaecologists may not have proper awareness about this disease.

The severity of symptoms caused by interstitial cystitis often varies, and some people may experience periods during which symptoms disappear. Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, urine cultures are usually free of bacteria. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection.

How is IC diagnosed? Is there any specific test for IC?

There are no specific tests for IC. Most doctors do a Cystoscopy or Urodynamics Study of the bladder. Usually, doctors use a series of tests to eliminate other conditions. They will ask you to do a urine culture to rule out UTI. They may even do a biopsy to rule out bladder cancer. It takes time even for the doctors to confirm as the symptoms are overlapping with numerous other diseases.

How is IC treated?

There is no specific treatment for IC.  Cystoscopy with hydrodistension, oral therapy (Pentosan, Amytriptiline, Gabapentin) intravesical therapy and surgical therapy form the backbone of management. It is difficult to know which treatment is best for a given patient. A staged protocol is followed and all the treatment modalities are applied to the patients in a sequential fashion—starting from the non-invasive to more invasive. However, diet, physical therapy and pain management help IC patients a lot. Many patients go into remission following a strict elimination diet.

Is IC a rare disease or is it lack of awareness?

Twenty-five years ago it was believed that IC did not exist in India and it was a disease predominantly present in the Western world. Symptoms of IC and tuberculosis are more or less same and as tuberculosis is common in India most of the patients of IC were diagnosed and treated as tuberculosis. Now in 2016 it is well established that IC is not uncommon in India and it is estimated that there are more than 1.25 million patients with IC worldwide. Almost 80% of IC patients are female. Women in the menopausal bracket are more prone but IC can affect anybody.

There is acute lack of awareness about IC not only among common people but even among doctors. Other than Urologists very few doctors have even heard the name of this disease. No wonder Interstitial Cystitis is known as an Orphan Disease.

After getting diagnosed with IC, I started doing extensive research on the disease. In March 2016 I started my blog . The same year I also started my IC patient group. Initially I started with only two other fellow sufferers whom I met through a Facebook page on IC. Today we are a strong group of 350 members. We have also started a Facebook Group and Facebook Page. Apart from IC we are also working on chronic pain and mental health as all these are interconnected.

Balaka Basu aka Trina writes can be found on her blog. Here’s what she says about herself:

An instructional designer by profession and a blogger and storyteller by passion. “Weaving Stories, Making Memories” is all that I am trying to do. My blog is all about stories, memoirs, anecdotes, journeys, emotions, sentiments, images, imageries and travel tales. Once you join me on my blog I take you on an unforgettable journey through my life.