IC Survivor Story of Bharathi Shiva

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p until 1992 I had no problems at all. Looking back I realize I was so blessed! I never had the need to go to the bathroom more than thrice a day. In fact, often I had to remind myself to go. I could be outside the whole day without worrying about going to the loo.

But overnight all that changed. It was Nov 1992. I was 17. I remember clearly, one night feeling a heavy kind of pain and fullness in my bladder. The pain went away when I passed urine. But soon came back. Again it went away when I went to the toilet. This happened a few more times that night. When this continued for a week I became alarmed and went to a doctor.

Every test I did, Sugar, urine culture, kidneys, a test with a dye injected to check for blockages, came back normal. But my reality was far from normal. Imagine at the blink of an eye going from using the toilet just thrice in a day to now having no count on the number of times. 

Left with no diagnosis and my reports showing normal I could do nothing about it. Feeling the pain and going to the toilet to relieve it became a part of daily life. It also meant times in the day where I had to bear with the pain until I get access to decent toilets. Bus rides, watching movies in theaters (No multiplexes those days), being outdoors like a beach or a park meant being in pain for long hours. 

The strange thing is the pain has no fixed schedule. It can occur and recur at any time. Many days the pain would recur immediately. And if this happens at nights, it would keep me on my toes! Making me get up, go to the loo, come back, lie down, feel pain, get up again for an hour or so before the pain subsides
 

And each day varies. Not just each day, it varies even within a day. Sometimes no pain for several hours followed by an hour or two where the pain would return every 5 or 10 mins. Days fluctuate between good, bad, ok. Good days meant being pain-free for several hours. Then you have Flare days. Days when pain is continuous. When going to the toilet doesn't bring relief or just a few minutes of relief. The flares usually subside after a day or two.  Sometimes it can stretch to 3 or 4 days. I do not have any other issues like burning or urgency. My only symptom is a pain in the bladder. Relieved by passing urine.

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y pain is not the unbearable or excruciating kind. If you can imagine a balloon being filled with water beyond capacity, the heaviness, the pressure. That's how my pain feels. And if I hold it for too long it starts to burn as well.

I can function with the pain. I can talk, walk, do things while having pain. But it will be with a lot of discomforts. And the intensity of the discomfort increases with every passing minute. Like when are you holding your breath and waiting to exhale. Once I pass urine the relief is instant. I will be pain-free until the time it decides to strike again. 

No one knew about this till recently. I did not tell anyone. I hid it from my friends. For me back then anything to do with the subject of the toilet was embarrassing, dirty and yucky!  I would wait till no one was around and only then use the toilet. Choosing to bear with the pain rather than allow anyone to see me go to the toilet. Much later as the years went by I still did not tell anyone because I felt anyway they cannot help me, so what's the point. Secondly I myself did not know what my condition was. How was I going to explain to others . 

For a brief two year period from 1996 to early 1998, my condition improved by at least 70%. It never went back to being what it was till I was 17 though. But by early 1998 it came back. Meanwhile  I completed my studies, got married, had kids. Pregnancy did not increase or decrease my condition. 

Life moved on. My mystery condition showed no sign of going away. I would often hope it would suddenly disappear. Overnight. Just as it had come. 

All along though I kept trying to find out what my affliction was. In 2011, during one my usual Google searches, I found the term Interstitial Cystitis. I could not believe it. After 19 years of being in the dark I finally got an answer. But it came with deep disappointment when I found it had no cure.

Still it was infinitely better than being in the dark. From thinking I was the only one with this strange condition, to finding out it has a medical name, to discovering IC websites and blogs by IC patients. But none of them were Indians. I was certain I was the only Indian in the whole wide world with IC.

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oon after my discovery I went to see a Urologist.  Though I had read there wasn't a cure. I was in Singapore then. The doctor looked at me and wasn't convinced. He said he had seen only one IC patient in his practice and that too recently. A Caucasian man in his 70s, whose pain was so severe he couldn't stand or walk and had to use a wheelchair. "Looking at you, I doubt if you have IC" he said. "If you had you wouldn’t be able to sit and talk like this". He suggested eliminating other conditions like OAB or PFD. When those medicines did not work he confirmed that I may have some form of IC. He said the only drug was Elmiron which wasn't available in Singapore and the cost of getting it from the US would be exorbitant. Plus there was no guarantee of it working for all. I agreed. I had also read about its side effects. So I did not pursue further treatments.

Then in Nov 2017 I chanced  upon Interstitial Cystitis India Forum in one of my Google searches. My jaw dropped. In all these years, I wasn't able to find a single Indian with IC. Now I saw a dedicated website and a personal blog by the Founder Balaka Basu. I am now an active member of the Forum's Patients Support Group. I learned a lot (still learning).  Some of the members are very well informed on the latest treatments. They are of immense help to newly diagnosed patients and people like me who had given up on treatments thinking there is no cure. What I learned was that if not cure, there are a lot of treatment options to alleviate or manage the symptoms. This encouraged me to consult a Urologist again. I am now taking Comfora/ Elmiron (the one I wasn't sure if I should take or not earlier). I learned from the forum members that not all have side effects and that it has shown to work very well with many. And that I should give it a try.

People now ask me how I lived/live with IC/PBS. I have no proper answer to this. I deal with it as best as I can at that moment. I tolerate it, put up with it, cope with it and forget about it once that day's episode is over.  The only difference is back then I coped in silence. Today I have the IC India Forum group to reach out to for support, for clearing doubts or to just vent. Being connected to a group like this has been very empowering for me.

Bharathi Shiva is 44 years old. She is having IC since she was 17. She lives with her two sons and husband in Mumbai. She has a Master’s degree in Social Work. Currently, she is associated with the Centre for Vocational Training (For Adults with Special Needs). Today she shares her  27-year journey with IC and what led her to this group, and hope.