Bharathi Shiva, 44 suffers from a rare condition called Interstitial Cystitis (IC) or a Painful Bladder Syndrome (PBS) and has lived without knowing about it for two decades. But joining an IC support group has brought her immense relief in terms of both medical and emotional help.
I have a condition called Interstitial Cystitis (IC) or Painful Bladder Syndrome(PBS). As the name suggests it is pain inside the bladder. There are other symptoms of IC/PBS. But mine is simply one of pain. Pain that starts inside the bladder and goes away after passing urine. That was my first symptom way back in 1992 and my only symptom till today.
When and How I got IC. The first and early symptoms
IC came to me all of a sudden. Overnight. There was no precursor to it like an illness or anything. Nor was it like a gradual progression of symptoms that worsened over time. It started one night as a dull, heavy pain deep inside my lower abdomen area. ( Much later I would come to know thats where the bladder is). It went away when I passed urine. But recurred within half an hour so. Again the pain went away once I passed urine. This happened a few more times that night. I thought it must be a one off occurence and did not think much of it. But when the pattern continued well into the week I got very worried.
I saw several doctors. But they could not find out what the problem was. Every test came back normal. Now what was I to do. It was established that there was nothing medically wrong with me. I could do nothing but live with the new development. It would be 19 years before I would know what my affliction was.
Nature of Pain
The pain I had/ have is not a doubling over kind of pain. Its more like a feeling of heaviness and fullness. I could continue to do things while in pain. Which means I can be talking to you while in pain, write exams, watch movies, be on a beach, in a bus, at a function, as well as at children's school functions. I can function normally. Except that I will be nursing a nagging pain, the heaviness and pressure of which keeps increasing till I pass urine. If I hold it for too long, times when I have no access to a toilet for hours, then the heavy pain inside will also start burning.
The frustrating and difficult part is the pain follows no schedule. There was no predictability to its occurence and recurrence. Sometimes it would be back within 10 mins, sometimes15, sometimes 5, sometimes after an hour. And sometimes for several hours there would no pain.
Even a single day can be varied. Like mornings I could be pain-free for hours, but evenings it would be completely opposite. With the pain back in frequent intervals sometimes, making me use the wash room continously. Like every 10 mins in the span of an hour before subsiding. Sometimes evenings would be pain free but nights the pain would start. Making me get up every 5 to 10 mins to use the bathroom in the span of an hour before finally subsiding. But the norm on any given day is waking up once, often times twice at night to pee. Though going back to sleep was not a problem.
Each day is different. There are good days, ok days, and bad days.
And then are Flare days. Days where the pain is continous. Flare days can last for a day to 3 days. Sometimes more. On such times it is not uncommmon to be in the toilet trying to squeeze out whatever is possible even if there was none. In the hope of the pain to go.
Diagnosis
I did not tell anyone about it at first. Firstly I did not know what it was. So how was I going to explain it to others. Also it was highly embarrassing. At least for me. At 17-18, the last thing you want to talk about is the toilet. I hid it from my friends. And later by the time I finished my studies and got married I did not see the need to talk about it. I felt there was no point talking about it as its not going to get me any new information, solution or cure.
Life went on. Pregnancy did not increase or decrease my condition. I want to mention that I had a brief period of respite from 1996-1997/98, where my symptoms abated nearly 80%. But it came back sometime in 1998.
For 19 years I was in the dark about what I was suffering from. But through the years I kept trying to find out more. With Internet coming in I would do random Google searches. Finally in 2011 in one of those Google searches I found the answer.
After this discovery I went to see Urologists in Singapore, where I was residing at the time. Even though I knew there was no cure for this. The Doctor told me he had seen only one person with IC. And that too very recently. A Caucasian man of 70 plus. And he was in so much pain that he had to use a wheel chair. Looking at you I don't think you have IC, he said. But by now thanks to Internet I was prepared for this. I told him I am pretty sure I have IC going by my symptoms. He said he will treat me for OAB and then zoom in on IC after eliminating other possibilities. Sure enough when other treatment did not work he confirmed I had 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 with the doctor and I had also read about its side effects. So I did not pursue further treatments.
IC Support Group
In 2017 I discovered the IC India Forum. This was indeed a great blessing and a big turning point. For the first time I found out about other Indians suffering from this condition. I joined their Whatsapp group. I heard and learnt about all the latest treatments available. It also helped me emotionally. Anytime I felt dejected or needed to vent, all I needed was access to my phone. In seconds there would be helpful messages, messages of comfort and useful information on alleviating the current flare.
Currently I have decided to start treatment again. Encouraged by all the IC India group members. I now consult a Urologist who treats IC patients. I am now taking Comfora/ Elmiron ( the one I wasn't sure to take earlier). I learnt that not all patients have side effects and that it is known to work very well with many, though the time it takes to act varies. So keeping my fingers crossed.
The Internet was and is a big source of help. It provided a wealth of information on IC/PBS. And more importantly connecting with people facing similar issues. This is very useful specially when you have a rare condition and not many people have it or are aware of it.
The Internet made it possible to connect with others from different corners of the world. It also helps in increasing awareness of rare conditions like this.
People now ask me how I lived/live with it. I have no proper answer to this. I dealt with it then and there as best as I could. I tolerated it, put up with it, coped with it. Only difference being back then I coped in silence. Today I have the IC India Forum group to reach out to for support, for clearing doubts, for suggestions or even to just vent.
My condition has nothing to do with the fact that I have an autistic child. My condition would have bothered me the same even if I did not have children.
How I dealt with my condition: Looking back I have no answer at all. I did not have a reference point on how to deal with this. I did what came to me. As in bouts of anger, but life is so packed it does not give you time to deal. You have to be on the go, dealing with challenges as they arise. Like, you are in a long distance bus and you are in pain. What can you do. Just grit your teeth and bear with it till you have access to a toilet. On nights when you can't sleep of course it makes you angry and bitter. But if you have four hours sound sleep, the next day you are off as the day engulfs you.You forget your anger till the next episode strikes.
