Bladder problems, help!

[Aoife303]

This is going to get a bit personal, apologies, but I really need some opinions on this.

I have ME, diagnosed for two and a half years, and accept that diagnosis.

Since last summer I've been having episodes of what the doctor says is cystitis. They've been getting more and more frequent, but I haven't seen my doctor in a few months, because he never does anything (I'm allergic to the anti-bacterial they prescribe). But it's getting worse. The last month almost every day I wake up feeling like my bladder is SO full it aches, and my lower back aches, I go to the loo and there's very little pee, certainly not enough to be 'full'. It comes slowly and often with a pain, like a burn, but also a twinging feeling, and often a dull stabbing in my bladder. When I leave the toilet I still feel like I need to go but there is just nothing there. The pain is so bad I cry sometimes - and this is from somebody who lives with a chronic pain condition!


My cultures all returned negative for infections, and the anti-bacterials I am allergic to didn't stop the flares (just made me feel rotten and brought me up in a rash).

Yet it continues. Full STI test negative. Had a pelvic exam, for unrelated reasons (went as moral support with a friend to a GUM clinic) and they said it all looked fine.

At my wits end. I'm only 21, I don't like spending the first four or five hours of every day curled up in agony going between my toilet and bed. I'm getting through two or three packs of that sodium citrate stuff, which helps lessen the burning, but not the pain and spasm-feelings.

I don't know how to go back to my doctor without looking like a total hypochondriac.

[margy]

This is going to get a bit personal, apologies, but I really need some opinions on this.

I have ME, diagnosed for two and a half years, and accept that diagnosis.

Since last summer I've been having episodes of what the doctor says is cystitis. They've been getting more and more frequent, but I haven't seen my doctor in a few months, because he never does anything (I'm allergic to the anti-bacterial they prescribe). But it's getting worse. The last month almost every day I wake up feeling like my bladder is SO full it aches, and my lower back aches, I go to the loo and there's very little pee, certainly not enough to be 'full'. It comes slowly and often with a pain, like a burn, but also a twinging feeling, and often a dull stabbing in my bladder. When I leave the toilet I still feel like I need to go but there is just nothing there. The pain is so bad I cry sometimes - and this is from somebody who lives with a chronic pain condition!
IAfter reading your post i feel so sorry for you,Dont be afraid to go back to your DR,You cant live like this!.take someone with you that knows how bad you are during your attack,get them to explain how bad it is,You are not a faking it,get help,DONT BE FOBBED OFF,with nothing wrong,im posting foul smelling urine,have a look and see how people are fobbed of with rubbish as the DR doesent know what to do,Demand to see a urologist.i hope you get help really soon take care.xx margy xx

My cultures all returned negative for infections, and the anti-bacterials I am allergic to didn't stop the flares (just made me feel rotten and brought me up in a rash).

Yet it continues. Full STI test negative. Had a pelvic exam, for unrelated reasons (went as moral support with a friend to a GUM clinic) and they said it all looked fine.

At my wits end. I'm only 21, I don't like spending the first four or five hours of every day curled up in agony going between my toilet and bed. I'm getting through two or three packs of that sodium citrate stuff, which helps lessen the burning, but not the pain and spasm-feelings.

I don't know how to go back to my doctor without looking like a total hypochondriac.

IAfter reading your post i feel so sorry for you,Dont be afraid to go back to your DR,You cant live like this!.take someone with you that knows how bad you are during your attack,get them to explain how bad it is,You are not a faking it,get help,DONT BE FOBBED OFF,with nothing wrong,im posting foul smelling urine,have a look and see how people are fobbed of with rubbish as the DR doesent know what to do,Demand to see a urologist

[bevvzy]

My heart really goes out to you. I was bed ridden (literally) in hospital for 9 months due to severe and debilitating bladder spasm. When I went on a gate pass I was unable to walk so had to use a wheel chair. However I had chronic uti due to a permanent indwelling catheter. I was unable to pass urine naturally due to a neurogenic bladder, which was caused by surgical mishap during aq hysterectomy - he slipped up and cut my pelvic nerve that transmits messages from bladder to brain. Tried ural, hyprex and cranberry juice - you name it. Have you been tested for a neurogenic bladder at all? You really need a urologist ! I had an operation finally called a cystectomy, where my urethra and bladder were both completely removed. No more bladder, no more spasm ! hopefully you dont fall into that catagory but my bladder did not work any way and became septic. I am guessing you have tried all the urinary antispasmodics?