Hi everyone,
My name is Lyndsay, i'm 22 and from England UK.
I've just recently come back from some urodynamic testing and I was told they are almost sure I have Interstitial Cystitis. I'm due to speak to my consultant for full analysis of the tests on 24th August, but until then I was hoping to ask the opinions of others as to if you believe I may have this.
My problems atart 5 years ago when i went on a bus trip with a full bladder thinking I could hold it and after getting off 20 mins later i only just made it to a public toilet before I wet myself. I never had any bladder problems at the time, in fact I could hold it like a camel for 10 hours at a time, but this experience led to anxiety.
For the 2 years after this I suffered with anxiety badly and although I sometimes felt like i needed the toilet every half hour, i could feel it was because of the anxiety. I did notice my toilet trips were becoming more frequent in general though.
After a course of counselling, i was able to separate the urgency because of anxiety and the pure needing to use the toilet normally.
My urinary frequency continued to increase and decrease randomly and i would have months of no problems followed by long periods of urinating every hour. I was told by my doctor I had OAB.
However, 2 years ago i started having longer patches of time needing to urinate more frequently. Some days i would need the toilet every 30 minutes although sometimes i would just dribble and this could happen for a few days at a time. I was placed on tolterodine tartrate by my GP but it lost its effectiveness after a few months and gave me terrible headaches.
Things got worse last May when i started leaking urine constantly. Only small amounts, but without exerting myself such as coughing or sneezing. It would just happen whether sitting or standing. I have been leaking ever since. I saw a physio who gave me kegal exercises but said my pelvic floors were good.
I started getting terrible abdominal cramp, especially turning at night and my bladder feels like its constantly bloated and pressurised. I get pains which throb like a heartbeat deep in my bladder and opening to the urethra. I sometimes have blood in my urine when it has been analysed by the doctors and i have constant patches of very bad symptoms: every 2 weeks to 2 months which can last a day to a week. During this time i feel paralysed by pain, i need to urinate every half hour, i get kidney pain and pass a lot of clear urine. The stabbing pains get worse and i become housebound. Things such as cola or fresh tomato can cause these.
When i give my doctor a urine sample during this time, the lab says theres no infection but very high amount of bacteria - possibly due to urinary retention. I am given antibiotics anyway to clear it and it does usually make me feel better for a few days.
JAN-MAR i trialed Toviaz and then Oxybutinin. Toviaz made me need to urinate more and Oxybutinin helped but caused me so much pain as well as sickness.
At the moment I can only hold 200ml in my bladder before I need to urinate due to the pain and discomfort, not because I am desperate to pee.
Finally after 5 years i was given a cytoscopy and was told by the nurse it looked like a healthy bladder but I am yet to see my consultant about this.
I then had a test where they fill my bladder and made me urinate on a special toilet. As it filled up I could feel the pressure and pain building up inside. I got to 170ml before i felt really sore, and by 300ml i had to stop the test because I was paralysed by pain. I have yet to have the full analysis of this test yet either.
The lady who did the test said she could rule out OAB as i was not complaining of needing to go straight away, but it shouldnt have been painful, and i was in sooooooooooo much pain it was unbelievable.
It is also much worse the week before my menstrual period and sometimes during it. Sometimes my clitoris is also very sensitive to touch and stings if touched, which is made worse during sex and I also get a lot of pain around my bladder and urethra after sex. About 1-3 days after sex I can sometimes see an increase in my symptoms as well
I have Polycystic ovaries and IBS which I have had since I was 7 or 8 so i know the difference in pain between these and my bladder problems.
I'm sorry if none of this makes sense, i would just be so grateful if even one person could give me their opinion as I have been searching for a diagnosis for years and this seems the most likely.
Thank you in advance and I hope everyone is having a good day today
My name is Lyndsay, i'm 22 and from England UK.
I've just recently come back from some urodynamic testing and I was told they are almost sure I have Interstitial Cystitis. I'm due to speak to my consultant for full analysis of the tests on 24th August, but until then I was hoping to ask the opinions of others as to if you believe I may have this.
My problems atart 5 years ago when i went on a bus trip with a full bladder thinking I could hold it and after getting off 20 mins later i only just made it to a public toilet before I wet myself. I never had any bladder problems at the time, in fact I could hold it like a camel for 10 hours at a time, but this experience led to anxiety.
For the 2 years after this I suffered with anxiety badly and although I sometimes felt like i needed the toilet every half hour, i could feel it was because of the anxiety. I did notice my toilet trips were becoming more frequent in general though.
After a course of counselling, i was able to separate the urgency because of anxiety and the pure needing to use the toilet normally.
My urinary frequency continued to increase and decrease randomly and i would have months of no problems followed by long periods of urinating every hour. I was told by my doctor I had OAB.
However, 2 years ago i started having longer patches of time needing to urinate more frequently. Some days i would need the toilet every 30 minutes although sometimes i would just dribble and this could happen for a few days at a time. I was placed on tolterodine tartrate by my GP but it lost its effectiveness after a few months and gave me terrible headaches.
Things got worse last May when i started leaking urine constantly. Only small amounts, but without exerting myself such as coughing or sneezing. It would just happen whether sitting or standing. I have been leaking ever since. I saw a physio who gave me kegal exercises but said my pelvic floors were good.
I started getting terrible abdominal cramp, especially turning at night and my bladder feels like its constantly bloated and pressurised. I get pains which throb like a heartbeat deep in my bladder and opening to the urethra. I sometimes have blood in my urine when it has been analysed by the doctors and i have constant patches of very bad symptoms: every 2 weeks to 2 months which can last a day to a week. During this time i feel paralysed by pain, i need to urinate every half hour, i get kidney pain and pass a lot of clear urine. The stabbing pains get worse and i become housebound. Things such as cola or fresh tomato can cause these.
When i give my doctor a urine sample during this time, the lab says theres no infection but very high amount of bacteria - possibly due to urinary retention. I am given antibiotics anyway to clear it and it does usually make me feel better for a few days.
JAN-MAR i trialed Toviaz and then Oxybutinin. Toviaz made me need to urinate more and Oxybutinin helped but caused me so much pain as well as sickness.
At the moment I can only hold 200ml in my bladder before I need to urinate due to the pain and discomfort, not because I am desperate to pee.
Finally after 5 years i was given a cytoscopy and was told by the nurse it looked like a healthy bladder but I am yet to see my consultant about this.
I then had a test where they fill my bladder and made me urinate on a special toilet. As it filled up I could feel the pressure and pain building up inside. I got to 170ml before i felt really sore, and by 300ml i had to stop the test because I was paralysed by pain. I have yet to have the full analysis of this test yet either.
The lady who did the test said she could rule out OAB as i was not complaining of needing to go straight away, but it shouldnt have been painful, and i was in sooooooooooo much pain it was unbelievable.
It is also much worse the week before my menstrual period and sometimes during it. Sometimes my clitoris is also very sensitive to touch and stings if touched, which is made worse during sex and I also get a lot of pain around my bladder and urethra after sex. About 1-3 days after sex I can sometimes see an increase in my symptoms as well
I have Polycystic ovaries and IBS which I have had since I was 7 or 8 so i know the difference in pain between these and my bladder problems.
I'm sorry if none of this makes sense, i would just be so grateful if even one person could give me their opinion as I have been searching for a diagnosis for years and this seems the most likely.
Thank you in advance and I hope everyone is having a good day today

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