Bladder pain and potential biopsy... Very nervous... - LUPUS UK

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Bladder pain and potential biopsy... Very nervous about the after effects

Chablis profile image
3 Replies

Hello there

I have suffered for over 15 years, on and off with what were thought to be uti's and was given the usual antibiotics, however to cut a long story short, I managed to get the gp to refer me to a urologist as I have suspected for some time that I have interstitial cystitis and he agreed, which in a way is good as I can stop taking needless antibiotics.

In order to confirm the diagnosis, I have to have a bladder biopsy under general anaesthetic. I am petrified to say the least of the pain I might endure afterwards as when I am suffering from an attack, I would quite happily let the doctors cut me open and take it out without being put to sleep ;-)

Can anyone tell me what I can expect? Could it cause a flare? Do the wounds heal quickly? I have a low white cell and neutrophil count before you even begin!

Any help would be appreciated

Me

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Chablis profile image
Chablis
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Natura profile image
Natura

Don't know Chablis...I suspect I have this too. I told kidney dr I didn't want antibiotics the rest of my life. So, I take cranberry supplement every day. Works for me, but everyone is different. Had uti s my entire life. Suspected by kidney dr that is why my kidneys are scarred. Good luck....hope u can get some answers here...

Barnclown profile image
Barnclown

Hell there Chablis

I can't quite believe you've posted this...your experience has a lot in common with mine...except am 62 and I bet older than you are

I finally was referred to urology last winter after a loooong history from my 20s of severe complex urinary infections had segued into suspicion that these had involved pyelonephritis all along

I was v lucky that the head of urology passed me to his female colleague who really has a good head on her shoulders....and listened v patiently & attentively to all the complicating factors involved in my case...my immunodeficiency (lymphopenia & hypogammaglobulinaemia), my SLE immunosuppressive treatment (myco etc), my sjogrens, my gyn issues etc etc and still decided there was good reason to put me through rigid cystoscopy & biopsies under general anaesthetic

The anesthetist decided to use a special general anaesthetic & prophylactic IV antibiotics on the day (6 July of this past summer...I'll always celebrate that date). I had the rigid cytoscopy & biopsy, which went v well, I'm told.

I stayed overnight in hospital which made me feel much safer as my BP bottoms out after sedation &/or anaesthetic. Yes I peed blood & 'razor blades' for a 2 days, and after that there was an unpleasant 'urgency' to pee + some exquisite urinary tract pain, but nothing as bad as we'd been anticipating ('we' being my medics & me...we knew there was good reason to feel considerable concern things might be more troublesome in my case, i.e. The male head of urology said he feared the op would "set me off" on another run of persistent infection....but no sign of that so far: HURRAH). Like you, I was REALLY worried the post op experience would be just like having yet another severe UTI...but this simply wasn't what actually happened....PHEW...and of my standard SLE symptoms only the fatigue flared, which I attribute as much to the expectable strain of the op & anaesthetic as anything else

Hope something in there is useful to you

And hope you'll let us know how you get on

🍀🌻

MK63 profile image
MK63

Hi. I was diagnosed with interstitial cystitis when I was 27. I'm now 52. It had got to the stage where the only time I was not experiencing symptoms was when I had my period! I would have happily had my bladder removed & after my bladder biopsy and stretching, I was seriously considering it! Until... I saw an article about acupuncture & interstitial cystitis.. I immediately booked an appointment with that practitioner and literally, she saved my life!! Within a year my symptoms were so reduced that I was down to one appointment per month. I rarely get flare ups of IC now but I do still see an acupuncturist once every 6-8 weeks. I just wish it would help all my other SLE annoyances!!

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