Diagnosed with Interstitial Cystitis - Malaysia
If you mention interstitial cystitis (IC) to a normal person i guess it will be the first time they have heard of such terminology and most can't even pronounce it correctly i bet (inter.. What?) Yeah i have this so called rare condition according to most urologist but if you search the net you will see that there are actually many of us suffering from it and maybe some are even misdiagnosed and don't really know what are they suffering from.
So here's my story in hope that i can shed some light to some of our fellow Malaysians who are currently suffering and lost. It was just 7 days after my c-section of my 2nd child and i started to have some kind of discomfort urinating so i though i having urine infection (UTI) and started taking Ural to try to alkalize my urine and flush out the bacteria which i usually do when i feel like a UTI coming, except that this time after 2 weeks it was not going away so I decided to go to my GP and get my urine checked. As usual I was given 3 days of antibiotics and potcit coz my GP said my urine is a bit "dirty" he did not directly say i have infection, but i noticed my symptoms was becoming worse while taking the meds anyhow decided to go back to him and was given another 3days of abx but my pain and symptoms never go away. I then decided to go to my gyne thinking that it may be related to my surgery but ultrasound seems fine and my urine culture shows no signs of infection, but i was again given abx and some meds for over active bladder (oab), this time i notice i was having difficulty to start my urine flow and difficulty to empty my bladder, i was in pain sitting in the toilet the whole night barely sleeping due to feeling of incomplete urination, having bladder pain which i thought was my csection surgery pain it was so tormenting and confusing whether the pain is from the surgery or my bladder. My gyne said nothing wrong with me and that i just have to wait till i finish my confinement time, its most probably just hormones and pressure on the bladder due to my baby pressing on it for 9months.. Which i doubt coz i was fine for a weeks after my delivery.
This time i decided to see a urologist, was put on a uroflow and he said my urine flow is ok and nothing is wrong with me as i too can empty my bladder just fine. I was not satisfied with his findings as i know my body and i know something is wrong, so i went to another urologist near my town and this time my urine culture shows bacteria infection (e-coli) so was given Ciprobay and some oab meds again, wow i can tell you that my symptoms changed from worse to worst... I was thinking of suicide with the pain on my bladder, burning pain on my pubic area the frequency every 15mins, and the lack of sleep not to mention that im supposed to be resting this critical time after c section surgery. It was the worst UTI i ever had.... So i thought it will go off after i completed my course of abx but it didnt... I was prescribed with another abx in hope to clear it off but again after 10days on it all my symptoms remained.. I suspected i have IC but his urologist told me not to think of it and its a troublesome disease, that i should just stop thinking about my bladder, how on earth am I supposed to do that if im feeling constant pain and burning 24/7? He just dont know how to treat me anymore... So i went to another urologist and he said based on my current uroflow readings i definitely have a stricture coz it shows start and stop of urine flow... But then i said it was not like that earlier and that i think i have IC, but he was very confident that its a stricture and advised me to go for urethrotomy. So yeah i followed his advise and got it done, however sad to say after that procedure i was still having all my symptoms with more additional symptoms of poking pain at my pubic area and yes my urine flow was still slow... I searched and read a lot from the internet and was convinced that what im having is very very likely to be IC, i started to follow the IC diet, endless search of remedies and a doctor that can help me with my condition. I found a urogyne who wanted me to do a hydrodistention cystoscopy to get diagnosed but i refused after seeing so many horrible testimonies of getting worst after getting it done.
Through a friend I found Dr. Warren Lo Hwa Loon (he is a urologist specialized in female urology). I have been to 9 doctors within the span of 4months and of all that i have seen Dr. Warren was the most compassionate of all and he knows at the pain we have is real and not only in our head. He suggested for me to go for urodynamics and better if can go for a cystoscopy with biopsy since my previous uro did not take any biopsy and there was no photos taken either during my cystoscopy so there's nothing for him to check for my diagnosis, but he said that based on my symptoms its likely its least now i have a doctor who would listen to me and help me.
So here's my story in hope that i can shed some light to some of our fellow Malaysians who are currently suffering and lost. It was just 7 days after my c-section of my 2nd child and i started to have some kind of discomfort urinating so i though i having urine infection (UTI) and started taking Ural to try to alkalize my urine and flush out the bacteria which i usually do when i feel like a UTI coming, except that this time after 2 weeks it was not going away so I decided to go to my GP and get my urine checked. As usual I was given 3 days of antibiotics and potcit coz my GP said my urine is a bit "dirty" he did not directly say i have infection, but i noticed my symptoms was becoming worse while taking the meds anyhow decided to go back to him and was given another 3days of abx but my pain and symptoms never go away. I then decided to go to my gyne thinking that it may be related to my surgery but ultrasound seems fine and my urine culture shows no signs of infection, but i was again given abx and some meds for over active bladder (oab), this time i notice i was having difficulty to start my urine flow and difficulty to empty my bladder, i was in pain sitting in the toilet the whole night barely sleeping due to feeling of incomplete urination, having bladder pain which i thought was my csection surgery pain it was so tormenting and confusing whether the pain is from the surgery or my bladder. My gyne said nothing wrong with me and that i just have to wait till i finish my confinement time, its most probably just hormones and pressure on the bladder due to my baby pressing on it for 9months.. Which i doubt coz i was fine for a weeks after my delivery.
This time i decided to see a urologist, was put on a uroflow and he said my urine flow is ok and nothing is wrong with me as i too can empty my bladder just fine. I was not satisfied with his findings as i know my body and i know something is wrong, so i went to another urologist near my town and this time my urine culture shows bacteria infection (e-coli) so was given Ciprobay and some oab meds again, wow i can tell you that my symptoms changed from worse to worst... I was thinking of suicide with the pain on my bladder, burning pain on my pubic area the frequency every 15mins, and the lack of sleep not to mention that im supposed to be resting this critical time after c section surgery. It was the worst UTI i ever had.... So i thought it will go off after i completed my course of abx but it didnt... I was prescribed with another abx in hope to clear it off but again after 10days on it all my symptoms remained.. I suspected i have IC but his urologist told me not to think of it and its a troublesome disease, that i should just stop thinking about my bladder, how on earth am I supposed to do that if im feeling constant pain and burning 24/7? He just dont know how to treat me anymore... So i went to another urologist and he said based on my current uroflow readings i definitely have a stricture coz it shows start and stop of urine flow... But then i said it was not like that earlier and that i think i have IC, but he was very confident that its a stricture and advised me to go for urethrotomy. So yeah i followed his advise and got it done, however sad to say after that procedure i was still having all my symptoms with more additional symptoms of poking pain at my pubic area and yes my urine flow was still slow... I searched and read a lot from the internet and was convinced that what im having is very very likely to be IC, i started to follow the IC diet, endless search of remedies and a doctor that can help me with my condition. I found a urogyne who wanted me to do a hydrodistention cystoscopy to get diagnosed but i refused after seeing so many horrible testimonies of getting worst after getting it done.
Through a friend I found Dr. Warren Lo Hwa Loon (he is a urologist specialized in female urology). I have been to 9 doctors within the span of 4months and of all that i have seen Dr. Warren was the most compassionate of all and he knows at the pain we have is real and not only in our head. He suggested for me to go for urodynamics and better if can go for a cystoscopy with biopsy since my previous uro did not take any biopsy and there was no photos taken either during my cystoscopy so there's nothing for him to check for my diagnosis, but he said that based on my symptoms its likely its least now i have a doctor who would listen to me and help me.
July 2016
I took Elmiron for 2 months unfortunately it did not help me I was still in pain. I started to have massive hair fall and there is also a long list of side effects with Elmiron one of it is long term eye damage, plus this drug is actually just to temporary coat the bladder. I decided to stop and did not open the 3rd bottle. I was discharged by Dr. Warren as I decided to try natural ways to help my body instead as really there isn't any cure for IC.
July 2021
Fast forward today 2021, I'm blessed to say I am well, symptom free and can live a normal life. I used natural remedies to help my condition and thank God it worked! He heard my cry & prayers when I was suffering that time. 🥰
Thank you Lord that I am well today, and I devote my time shedding light and help others find solutions when they need it the most as it helped me to where I am today.
*This is my personal story, it's not meant to diagnose, treat, cure or prevent any diseases. If you have persistent symptoms, please check with your medical practitioner.
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