Breaking the Silent Barriers - Bharathi
My 27-year long story with Painful Bladder Syndrome Aka Interstitial Cystitis (IC)
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. She is associated with the Centre for Vocational Training (Special Needs) Adults. Today she shares her arduous 27-year journey with IC.
Part 1 Nov 1992. I am up at night doing a college project. I begin to feel a heavy kind of pain. Somewhere inside, below the stomach area. I go to the toilet. The pain goes away. Half an hour or so later the pain returns. Again, I go to the toilet and the pain goes away. Strange I think and go to bed. Am fast asleep. I find myself being woken up by a nagging pain. It’s the same pain. I get up and trudge my way to the toilet. I go to college the next day as usual. In the afternoon I get the pain again. When I get it again on the bus commute back home, I break into a sweat. The travel time is 45 min to an hour. Plus, a short walk from the bus stop to home. The bus weaves along the regular route. But I am in another world. The heavy pain intensifies. It feels like a balloon filled beyond capacity. About to burst. I keep still. I must. Till I reach home. As the minutes tick I feel like am choking, trying to bear the pain. I think about the walk back home. It feels impossible. Somehow, I make it home in one piece. I rush to the toilet. PHEW! I slump on the sofa exhausted but RELIEVED. At that time, I did not think this would happen again. But it does. When this continues for a week, I become alarmed. More distressing was using the loo outside of my home. You see this was something I never had to worry about ever. I could go the whole day without ever needing to use the toilet. Till now I needed to the toilet only thrice the whole day. On waking up, in the evening and at night before going to bed. Now all of a sudden everything changed. From 3 times to endless times. Is this happening for real??? Shock! Disbelief! I was sure to get treated for this. But every test come back normal. Doctors tell me they can find nothing wrong. I stare in disbelief. How can this be ‘normal’? Wasn’t there some solution to this problem, I think, shocked. But I am helpless. I have no option but to carry on like nothing’s wrong. You cannot stop living life, can you. New Normal Doing regular day to day things while having pain becomes my new normal. Things I had taken for granted before. Bus commutes, outings, get together in a restaurant, undisturbed sleep. You name it. I now have to do them all knowing the pain can strike anytime. Imagine this is your life now: You plop into bed. To sleep, or read a book, relax. You feel the pain starting. You ignore it. You don’t want to get up. It’s so tiresome. You try to shut out the pain. Pretend it’s not there. Hope it will go away. But it never does. Ultimately you give in and get up and go. You plop back into bed. There is no predicting how long the pain will be gone. Sometimes its back within minutes, sometimes an hour. It has no fixed schedule. It occurs even when you are asleep. It stirs you from your slumber. You ignore it. Try to go back to sleep. Instead the pain keeps you tossing and turning. You realize you are better off getting up and going rather than fighting it. You go out for a movie with friends. You settle down to watch. Your pain starts. Noooo! You scream inwardly. You are angry. This @₹#& Pain. You curse. Those days there was no multiplex or malls like today with decent toilet access. Even if there was you wouldn’t have gone immediately. You don’t want your friends to suspect something is wrong with you. You are in a train. You prefer to be with the pain rather than going to the train loo often. During the nights the entire train will be silently sleeping. While you will have to get up and go. How you envy the other passengers. Aisle seat is your seat of choice in planes. On flare days pain nags, you constantly. Flare days are when the pain doesn’t subside no matter how many times trips you take to the loo. They can last for a day or 2. Sometimes 3. Recurring pain keeps you on your toes and up at nights with continuous trips to the bathroom. There are times when there will be nothing left for you to pass. But the pain would be there. So, you try and force yourself to pass whatever you can. Even a few drops. Just so the pain subsides. Today I know they are called Bladder Spasms. Many a day as I sit in the toilet, sometimes in the wee hours of night, during such spasms trying to squeeze out whatever drops I can, I would cry in rage that normal people look for bedroom with attached bathroom. But I must look for a bathroom with attached bed!!! Nature of my pain The pain I get is not a doubling over kind of pain or a debilitating one like a migraine. It occurs deep inside, at a particular area at the lower abdomen (exactly where the bladder is) The only way I can make the pain go is by passing urine. My Pain Has a Mind of its Own! It would have been so much easier if there was a predictable timing to the recurrence of pain. Like say every 3 hours. Or something to that effect. Unfortunately, there isn’t one. How soon the pain recurs is unpredictable. Sometimes within minutes, Sometimes 15, sometimes an hour. On lucky days no pain for several hours. And on flare days no number of bathrooms trips can make the pain better. Ruled by Randomness! Because of this unpredictability its impossible to plan ahead. You have tried all tactics you can think of and failed. Failed to bring a routine to the occurrence of pain. So, you do what’s in your control. Rest you have to resign to randomness. You have no clue how the day will pan out as it varies each day. You go to the toilet just before stepping out of the house. That’s in your control. But how soon the pain comes back is not in your control. Sometimes no sooner than you reach the road the pain comes back. What are your options. You can’t rush back home. Even if you did by now you know it’s often a wasted effort. As there is no guarantee that it will not return immediately. What I dont have is- 1.No Urgency 2.No leaking. 3.No burning or painful micturition 4.I know readers may be wondering if diapers are an option. 6.Diapers won’t work for me. I need to make an effort to get the flow to start. I can’t just start the flow. I need to sit in a position as well and then get the flow going. Shame, Embarassment, Hiding. Apart from the physical part, this condition affected my self-image. I would go out of my way to hide my condition from others. Talking about pain and ’toilet’ visits is hardly attractive when you are 17, 18. Plus, to me the act of going to the toilet was something to be done discreetly. I don’t know how I got that trait, but that was how it was. I wouldn’t like anyone to know I am going to the toilet. I found that embarrassing. I would to look for ways and means to slip away and quickly use the toilet without others noticing. When I am outside, in a gathering or a function, visiting someone’s house, even if there was a toilet access I wouldn’t go. It felt like social suicide in my head. I was sure I would be judged badly for it. I would rather sit with the pain. Avoid going as long as I can bear it. I also felt shame and was afraid of rejection. Since we associate toilet with being dirty, disgusting I subconsciously felt if people come to know they will shun me as dirty and disgusting. I feared I would be disliked and be avoided by others if they knew. These were very real fears I had for a long long time. In fact, it was only very recently in 2018 after I got to know others from IC India Forum, that I got the courage to talk about my IC. I was also very sensitive. Keeping it a secret was a way to protect myself against insensitive remarks or comments. Also, when you are only person you know going through this, it’s hard to tell others. We don’t get peer support to validate our experience. Even if there was just one more person going through what you are going through it would give you some confidence to talk about it. But when you are left with no one to corroborate what you are saying, especially when people suspect you are making this all up, it becomes very hard to defend ourselves. 1996 to beginning of 1998 For a brief period between 1996 and beginning of 1998 the frequency of my pain lessened considerably. I could go several hours without pain. Almost 50-60% back to normal. I nurtured the hope that soon I would be 100% pain free like before. That did not happen. By early 1998 my remission period ended. It was back to how it was earlier. Though flare days lessened quite a bit. That was the only silver lining to quell the disappointment. I got married. Had kids. Got busy with other responsibilities. Autism became my focus once my older son got diagnosed with it. Life moved ahead with the invisible pain constantly amongst it all in the background. I continued keeping this to myself. Mainly because I still did not know what it was. And I seemed to be the only one having this. I knew no one else with this. So, who will believe me. This is just unheard of. If I did not have this, even I will not believe it. And even if people believed me, they wouldn’t be able to help me or give a solution. So, I did not see the point in telling others, including my husband. On and off though I went back to doctors, tried Yoga, Ayurveda, Homeopathy. But no luck. With the arrival of Google and internet I tried online searches. Especially during flare days. To find out what I was having. For years my search came up with nothing. Until one October in 2011!
My condition has a name!!!!I One day in Oct 2011 as I once again typed search words in Google, I saw the term Painful Bladder Syndrome. The words ‘pain’ and ‘bladder’ caught my attention. That’s when I finally found my answer……Interstitial Cystitis/ Painful Bladder Syndrome. IC/PBS. After 19 years of searching and remaining in the dark. I couldn’t believe it! It was also a light bulb moment. My problem was the bladder. And not frequent urination. They were two different things, I learnt. The bladder pain leads me to use the toilet often. The euphoria was short lived through when I saw it had no cure. That hit me hard. It felt criminal to have come so far only to know its incurable. It seemed to be a pattern in my life. To have something uncommon and with no cure. First was Autism. Now this. But it was, as I would discover, better than remaining in the dark. I found IC help websites, other patients’ experiences in blogs/Twitter/ Fb groups. To know there are others was a huge help. But none were Indian though. I felt I was the only Indian in the whole, wide world to have this. Seeing a Doctor again Soon after my discovery I decided to see a doctor again. Though there wasn’t a cure, some were being helped by a drug called Elmiron*. It was expensive and I read it wasn’t effective for all. Still I went ahead and saw a doctor. I was living in Singapore then. The Doctor wasn’t convinced of my self-diagnosis. He said he will treat me for Overactive bladder. Which I knew I did not have. But he insisted that he wants to eliminate that possibility. Who was I to argue? When that did not work, he said I could be having IC. But he wasn’t keen on me getting the tablet (Elmiron) all the way from US. It would be expensive, and it had not been proven to be effective for all. One tablet was about 14 Sing dollars. I agreed. I did not want to experiment with something so expensive. Especially when it wasn’t proven to work for all. (*It is now available in India under the brand name Comfort. It continues to be one of the leading medicationss for IC. It has shown positive results for many)
Feb 2012 There was one more thing I wanted to do and that was cystoscopy. This is done to check for inflammation, glomerutions or lesions inside the bladder. I went to another doctor. Told him my condition and what I wanted. This doctor wasn’t convinced either that I had IC or needed a cystoscopy. But said he would do it if I wanted it. I had some hope that something would show up for which some intervention could happen. The results came back normal**. Once I again I found myself hitting a wall just like back in 1992. Here I was with this pain for nearly 20 years. Knowing about IC and bladder lining issues now, I expected some damage to show up. And hopefully be addressed. It was hard to believe there was none. Back to square one. Continue like before. ** My Cystoscopy was not done with Hydrodistension. I would come to know later that for a Cystoscopy to show accurate results it must be done with Hydrodistension. Hmm…no wonder!) 2015 I moved to India in 2015. I decided to try my luck again. Here too the doctor wasn’t immediately convinced about my IC. I was first treated for possible infection (don’t remember what now) with antibiotics. When it did not work I was advised to get checked for Pelvic Floor Dysfunction and get back. I did not pursue that. 2016 I saw an ad for an opening of a Pain Clinic near my home. It was here for the first time I felt a doctor listened to my pain like it was a possibility. Whether it could be IC or not he did not say he knew for now but said something about neuropathic pain. I was asked to take Gabapentin 100*** for 3 months. And report back. But I saw no change and gave up. I should have gone back and reported. But with so many other things up to my neck, younger son’s school, older son’s therapy and hunts for nearby special schools. And managing alone with husband still working in Singapore, it was hard to keep up. A deeper reason could be believing this medicine is not working. As I saw no changes. ***(Later I would come to know Gabapentin is one of the main medicines for IC. But 100 mg was too less for me and it had to be taken for a long time with other meds for it to make a dent on my pain)
Nov 2017 In November 2017, on one of those in numerous post flare Google searches I discovered IC India Forum. Till then my searches for news on IC in India or Indians with IC had proved futile. Further strengthening my belief that I was the only Indian with IC/PBS. This discovery was absolutely exciting. I shot off an email and waited for a reply. But I got no none 😦 March 2018. Second time lucky I looked up the India Forum again. In the blog section there was an alternate id. I emailed Balaka Basu the writer of the blog and went off to sleep. It was 2 am. I did not want to keep my hopes high again. I prepared myself for no response. But this time there was one. I had achieved the seemingly impossible. Found an Indian with IC! And in the same city as me!!! Post March 2018. And just like that I got to know a whole new world in my own backyard. I joined the WA group. I learnt how symptoms differed vastly across patients. Some had frequency, urgency but no bladder pain. Some had intense burning or radiating pain. I also saw many actively pursuing different treatments with good results. Most had developed IC 2015 or post 2015. So, they had the will and motivation to look at and research latest treatment options. I on the other hand had given up looking for treatments. Plus, I felt I had missed the window of opportunity. Because I had not been treated early. And having IC for 2 plus decades now. I was certain I cannot be helped now. Sept 2018. Opening up. Baby steps The third GIBPS (Global Interstitial Cystitis Bladder Pain Society) Conference was to be held in Mumbai. Ms Balaka Basu was doing a presentation on patient stories. She asked me if I can share my story. I hesitated. I had been so secretive till now. Even when I had wanted to share, fear of ridicule or being dismissed as a weirdo had stopped me. But I told myself I must muster the courage. I shared my story. And slowly with others. Family, friends. Today when I have a doctor visit, I tell them the real reason. And then explain briefly what IC is if they ask. I am not embarrassed to visit the toilet several times even if I am in group. I don’t sit in pain like I used to before. If they ask me why I am going so often, I tell them why without the need to feel shame. I must thank the members of the Forum for giving me the confidence to do this. Forget the past. Start Afresh! Feb 2019 to now After listening to doctors in the GIPBS conference, I felt I should consult a doctor again. ‘Forget the past. Start afresh’ The doctor’s voice boomed radiating positivity, confidence and exuberance. It was refreshing. He explained to me the line of treatment he was going to follow. And told me the key is to be patient and not give up on treatment. “There is no magic bullet here. But that doesn’t mean not trying either” Monthly follow ups are important to determine what medicines work for me. “We are working with many unknowns. So it can take even six months or more just to see what medicine works for you. And then taking the medicines regularly for 3 or 6 months or even a year before the changes can be felt. Don’t stop halfway.” Aye aye Doctor! 🙂 The biggest change is my changed thinking. No longer hiding. Positive acceptance of my condition and feeling grateful to be in the midst of people on the forefront of IC treatment. There are many windows in life. 🙂 Bharathi Shiva bharathi.shiv@gmail.com
Part 1 Nov 1992. I am up at night doing a college project. I begin to feel a heavy kind of pain. Somewhere inside, below the stomach area. I go to the toilet. The pain goes away. Half an hour or so later the pain returns. Again, I go to the toilet and the pain goes away. Strange I think and go to bed. Am fast asleep. I find myself being woken up by a nagging pain. It’s the same pain. I get up and trudge my way to the toilet. I go to college the next day as usual. In the afternoon I get the pain again. When I get it again on the bus commute back home, I break into a sweat. The travel time is 45 min to an hour. Plus, a short walk from the bus stop to home. The bus weaves along the regular route. But I am in another world. The heavy pain intensifies. It feels like a balloon filled beyond capacity. About to burst. I keep still. I must. Till I reach home. As the minutes tick I feel like am choking, trying to bear the pain. I think about the walk back home. It feels impossible. Somehow, I make it home in one piece. I rush to the toilet. PHEW! I slump on the sofa exhausted but RELIEVED. At that time, I did not think this would happen again. But it does. When this continues for a week, I become alarmed. More distressing was using the loo outside of my home. You see this was something I never had to worry about ever. I could go the whole day without ever needing to use the toilet. Till now I needed to the toilet only thrice the whole day. On waking up, in the evening and at night before going to bed. Now all of a sudden everything changed. From 3 times to endless times. Is this happening for real??? Shock! Disbelief! I was sure to get treated for this. But every test come back normal. Doctors tell me they can find nothing wrong. I stare in disbelief. How can this be ‘normal’? Wasn’t there some solution to this problem, I think, shocked. But I am helpless. I have no option but to carry on like nothing’s wrong. You cannot stop living life, can you. New Normal Doing regular day to day things while having pain becomes my new normal. Things I had taken for granted before. Bus commutes, outings, get together in a restaurant, undisturbed sleep. You name it. I now have to do them all knowing the pain can strike anytime. Imagine this is your life now: You plop into bed. To sleep, or read a book, relax. You feel the pain starting. You ignore it. You don’t want to get up. It’s so tiresome. You try to shut out the pain. Pretend it’s not there. Hope it will go away. But it never does. Ultimately you give in and get up and go. You plop back into bed. There is no predicting how long the pain will be gone. Sometimes its back within minutes, sometimes an hour. It has no fixed schedule. It occurs even when you are asleep. It stirs you from your slumber. You ignore it. Try to go back to sleep. Instead the pain keeps you tossing and turning. You realize you are better off getting up and going rather than fighting it. You go out for a movie with friends. You settle down to watch. Your pain starts. Noooo! You scream inwardly. You are angry. This @₹#& Pain. You curse. Those days there was no multiplex or malls like today with decent toilet access. Even if there was you wouldn’t have gone immediately. You don’t want your friends to suspect something is wrong with you. You are in a train. You prefer to be with the pain rather than going to the train loo often. During the nights the entire train will be silently sleeping. While you will have to get up and go. How you envy the other passengers. Aisle seat is your seat of choice in planes. On flare days pain nags, you constantly. Flare days are when the pain doesn’t subside no matter how many times trips you take to the loo. They can last for a day or 2. Sometimes 3. Recurring pain keeps you on your toes and up at nights with continuous trips to the bathroom. There are times when there will be nothing left for you to pass. But the pain would be there. So, you try and force yourself to pass whatever you can. Even a few drops. Just so the pain subsides. Today I know they are called Bladder Spasms. Many a day as I sit in the toilet, sometimes in the wee hours of night, during such spasms trying to squeeze out whatever drops I can, I would cry in rage that normal people look for bedroom with attached bathroom. But I must look for a bathroom with attached bed!!! Nature of my pain The pain I get is not a doubling over kind of pain or a debilitating one like a migraine. It occurs deep inside, at a particular area at the lower abdomen (exactly where the bladder is) The only way I can make the pain go is by passing urine. My Pain Has a Mind of its Own! It would have been so much easier if there was a predictable timing to the recurrence of pain. Like say every 3 hours. Or something to that effect. Unfortunately, there isn’t one. How soon the pain recurs is unpredictable. Sometimes within minutes, Sometimes 15, sometimes an hour. On lucky days no pain for several hours. And on flare days no number of bathrooms trips can make the pain better. Ruled by Randomness! Because of this unpredictability its impossible to plan ahead. You have tried all tactics you can think of and failed. Failed to bring a routine to the occurrence of pain. So, you do what’s in your control. Rest you have to resign to randomness. You have no clue how the day will pan out as it varies each day. You go to the toilet just before stepping out of the house. That’s in your control. But how soon the pain comes back is not in your control. Sometimes no sooner than you reach the road the pain comes back. What are your options. You can’t rush back home. Even if you did by now you know it’s often a wasted effort. As there is no guarantee that it will not return immediately. What I dont have is- 1.No Urgency 2.No leaking. 3.No burning or painful micturition 4.I know readers may be wondering if diapers are an option. 6.Diapers won’t work for me. I need to make an effort to get the flow to start. I can’t just start the flow. I need to sit in a position as well and then get the flow going. Shame, Embarassment, Hiding. Apart from the physical part, this condition affected my self-image. I would go out of my way to hide my condition from others. Talking about pain and ’toilet’ visits is hardly attractive when you are 17, 18. Plus, to me the act of going to the toilet was something to be done discreetly. I don’t know how I got that trait, but that was how it was. I wouldn’t like anyone to know I am going to the toilet. I found that embarrassing. I would to look for ways and means to slip away and quickly use the toilet without others noticing. When I am outside, in a gathering or a function, visiting someone’s house, even if there was a toilet access I wouldn’t go. It felt like social suicide in my head. I was sure I would be judged badly for it. I would rather sit with the pain. Avoid going as long as I can bear it. I also felt shame and was afraid of rejection. Since we associate toilet with being dirty, disgusting I subconsciously felt if people come to know they will shun me as dirty and disgusting. I feared I would be disliked and be avoided by others if they knew. These were very real fears I had for a long long time. In fact, it was only very recently in 2018 after I got to know others from IC India Forum, that I got the courage to talk about my IC. I was also very sensitive. Keeping it a secret was a way to protect myself against insensitive remarks or comments. Also, when you are only person you know going through this, it’s hard to tell others. We don’t get peer support to validate our experience. Even if there was just one more person going through what you are going through it would give you some confidence to talk about it. But when you are left with no one to corroborate what you are saying, especially when people suspect you are making this all up, it becomes very hard to defend ourselves. 1996 to beginning of 1998 For a brief period between 1996 and beginning of 1998 the frequency of my pain lessened considerably. I could go several hours without pain. Almost 50-60% back to normal. I nurtured the hope that soon I would be 100% pain free like before. That did not happen. By early 1998 my remission period ended. It was back to how it was earlier. Though flare days lessened quite a bit. That was the only silver lining to quell the disappointment. I got married. Had kids. Got busy with other responsibilities. Autism became my focus once my older son got diagnosed with it. Life moved ahead with the invisible pain constantly amongst it all in the background. I continued keeping this to myself. Mainly because I still did not know what it was. And I seemed to be the only one having this. I knew no one else with this. So, who will believe me. This is just unheard of. If I did not have this, even I will not believe it. And even if people believed me, they wouldn’t be able to help me or give a solution. So, I did not see the point in telling others, including my husband. On and off though I went back to doctors, tried Yoga, Ayurveda, Homeopathy. But no luck. With the arrival of Google and internet I tried online searches. Especially during flare days. To find out what I was having. For years my search came up with nothing. Until one October in 2011!
My condition has a name!!!!I One day in Oct 2011 as I once again typed search words in Google, I saw the term Painful Bladder Syndrome. The words ‘pain’ and ‘bladder’ caught my attention. That’s when I finally found my answer……Interstitial Cystitis/ Painful Bladder Syndrome. IC/PBS. After 19 years of searching and remaining in the dark. I couldn’t believe it! It was also a light bulb moment. My problem was the bladder. And not frequent urination. They were two different things, I learnt. The bladder pain leads me to use the toilet often. The euphoria was short lived through when I saw it had no cure. That hit me hard. It felt criminal to have come so far only to know its incurable. It seemed to be a pattern in my life. To have something uncommon and with no cure. First was Autism. Now this. But it was, as I would discover, better than remaining in the dark. I found IC help websites, other patients’ experiences in blogs/Twitter/ Fb groups. To know there are others was a huge help. But none were Indian though. I felt I was the only Indian in the whole, wide world to have this. Seeing a Doctor again Soon after my discovery I decided to see a doctor again. Though there wasn’t a cure, some were being helped by a drug called Elmiron*. It was expensive and I read it wasn’t effective for all. Still I went ahead and saw a doctor. I was living in Singapore then. The Doctor wasn’t convinced of my self-diagnosis. He said he will treat me for Overactive bladder. Which I knew I did not have. But he insisted that he wants to eliminate that possibility. Who was I to argue? When that did not work, he said I could be having IC. But he wasn’t keen on me getting the tablet (Elmiron) all the way from US. It would be expensive, and it had not been proven to be effective for all. One tablet was about 14 Sing dollars. I agreed. I did not want to experiment with something so expensive. Especially when it wasn’t proven to work for all. (*It is now available in India under the brand name Comfort. It continues to be one of the leading medicationss for IC. It has shown positive results for many)
Feb 2012 There was one more thing I wanted to do and that was cystoscopy. This is done to check for inflammation, glomerutions or lesions inside the bladder. I went to another doctor. Told him my condition and what I wanted. This doctor wasn’t convinced either that I had IC or needed a cystoscopy. But said he would do it if I wanted it. I had some hope that something would show up for which some intervention could happen. The results came back normal**. Once I again I found myself hitting a wall just like back in 1992. Here I was with this pain for nearly 20 years. Knowing about IC and bladder lining issues now, I expected some damage to show up. And hopefully be addressed. It was hard to believe there was none. Back to square one. Continue like before. ** My Cystoscopy was not done with Hydrodistension. I would come to know later that for a Cystoscopy to show accurate results it must be done with Hydrodistension. Hmm…no wonder!) 2015 I moved to India in 2015. I decided to try my luck again. Here too the doctor wasn’t immediately convinced about my IC. I was first treated for possible infection (don’t remember what now) with antibiotics. When it did not work I was advised to get checked for Pelvic Floor Dysfunction and get back. I did not pursue that. 2016 I saw an ad for an opening of a Pain Clinic near my home. It was here for the first time I felt a doctor listened to my pain like it was a possibility. Whether it could be IC or not he did not say he knew for now but said something about neuropathic pain. I was asked to take Gabapentin 100*** for 3 months. And report back. But I saw no change and gave up. I should have gone back and reported. But with so many other things up to my neck, younger son’s school, older son’s therapy and hunts for nearby special schools. And managing alone with husband still working in Singapore, it was hard to keep up. A deeper reason could be believing this medicine is not working. As I saw no changes. ***(Later I would come to know Gabapentin is one of the main medicines for IC. But 100 mg was too less for me and it had to be taken for a long time with other meds for it to make a dent on my pain)
Nov 2017 In November 2017, on one of those in numerous post flare Google searches I discovered IC India Forum. Till then my searches for news on IC in India or Indians with IC had proved futile. Further strengthening my belief that I was the only Indian with IC/PBS. This discovery was absolutely exciting. I shot off an email and waited for a reply. But I got no none 😦 March 2018. Second time lucky I looked up the India Forum again. In the blog section there was an alternate id. I emailed Balaka Basu the writer of the blog and went off to sleep. It was 2 am. I did not want to keep my hopes high again. I prepared myself for no response. But this time there was one. I had achieved the seemingly impossible. Found an Indian with IC! And in the same city as me!!! Post March 2018. And just like that I got to know a whole new world in my own backyard. I joined the WA group. I learnt how symptoms differed vastly across patients. Some had frequency, urgency but no bladder pain. Some had intense burning or radiating pain. I also saw many actively pursuing different treatments with good results. Most had developed IC 2015 or post 2015. So, they had the will and motivation to look at and research latest treatment options. I on the other hand had given up looking for treatments. Plus, I felt I had missed the window of opportunity. Because I had not been treated early. And having IC for 2 plus decades now. I was certain I cannot be helped now. Sept 2018. Opening up. Baby steps The third GIBPS (Global Interstitial Cystitis Bladder Pain Society) Conference was to be held in Mumbai. Ms Balaka Basu was doing a presentation on patient stories. She asked me if I can share my story. I hesitated. I had been so secretive till now. Even when I had wanted to share, fear of ridicule or being dismissed as a weirdo had stopped me. But I told myself I must muster the courage. I shared my story. And slowly with others. Family, friends. Today when I have a doctor visit, I tell them the real reason. And then explain briefly what IC is if they ask. I am not embarrassed to visit the toilet several times even if I am in group. I don’t sit in pain like I used to before. If they ask me why I am going so often, I tell them why without the need to feel shame. I must thank the members of the Forum for giving me the confidence to do this. Forget the past. Start Afresh! Feb 2019 to now After listening to doctors in the GIPBS conference, I felt I should consult a doctor again. ‘Forget the past. Start afresh’ The doctor’s voice boomed radiating positivity, confidence and exuberance. It was refreshing. He explained to me the line of treatment he was going to follow. And told me the key is to be patient and not give up on treatment. “There is no magic bullet here. But that doesn’t mean not trying either” Monthly follow ups are important to determine what medicines work for me. “We are working with many unknowns. So it can take even six months or more just to see what medicine works for you. And then taking the medicines regularly for 3 or 6 months or even a year before the changes can be felt. Don’t stop halfway.” Aye aye Doctor! 🙂 The biggest change is my changed thinking. No longer hiding. Positive acceptance of my condition and feeling grateful to be in the midst of people on the forefront of IC treatment. There are many windows in life. 🙂 Bharathi Shiva bharathi.shiv@gmail.com
Comments
Post a Comment