Interstitial Cystitis with negative biopsy?

[G3miniStar]

Hi everyone, I had a cystoscopy done during a surgery for endometriosis under general and the report says 'petichiae seen on double fill' and a question of Interstitial Cystitis. They took a biopsy and that shows 'a few scattered mast cells' but reports 'negative for significant inflammation'.

One Urogynae has told me that means I don't have IC, BUT I saw a different Urogynae, equally qualified and experienced consultant, and he says just because the biopsy was negative doesn't mean it's not IC, that I do have it because IC is another name for Painful Bladder Syndrome and that I have all the symptoms. Ultimately their treatment plans are the same but I'm a bit annoyed to say the least and don't know who to believe.

Looking for some thoughts please- can it still be IC if the biopsy was negative?

[Gen89]

My cystoscopy was normal but I have the symptoms of IC. My urine tests are always normal so my symptoms are put down to IC or over active bladder. They come and go every few months. I only drink water now and the occasional decaffeinated coffee. Bladder training helped. Stress does seem to affect occurrence. Wine definitely causes problems. I’ve tried cutting out various foods but I’m not sure for me it makes much difference. But there are now some opinions that women can have chronic utis which aren’t picked up on normal urine tests and bacteria get embedded in the bladder wall and are released from time to time causing symptoms. If you are post menopause then oestrogen gel may help or hrt if you can take that. A friend of mine takes Hiprex which makes the urine more acidic so kills bacteria but some people find that more irritant. Unless you get a positive test result for uti or inflammation then it’s hard to give a definite diagnosis and all you can do is try different treatments and see what works for you. I hope things improves on I know how rotten it is to have ongoing uti symptoms.

[G3miniStar in reply to Gen89]

Yes I have the same, urine comes back normal, all my bladder tests (cystoscopy, biopsy, urodynamics) all normal. But I have an incenscent need to pee! It's horrible. Like you I'm predominantly drinking water, with a glass of milk in the morning. I am being offered instillations so I'll see how they go. I just keep being told because I have severe endo the two go hand in hand, but I've never had endo on my bladder. Honestly, these doctors. I hope things improve for you too x

[Gen89 in reply to G3miniStar]

I find if there is any other inflammation in my abdomen eg constipated, diverticulitis then my bladder is also affected. In my twenties I had endometriosis and laser treatment followed by pregnancy sorted that out for me. I take daily naproxen for ankylosing spondylitis and if I stop that my bladder seems to be more sore. I would be interested to know how you get on with the bladder installations so please post again. I hope all goes well. I’ve had lots of inflammatory/autoimmune problems so I really sympathise. The constantly needing to pee is the worst feeling of all.

[Vasiliki99 in reply to G3miniStar]

I don't know I can pee up to 50 times when bad in 37 hours it's just IC interstitial cystitis bladder pain

[Vasiliki99 in reply to Gen89]

True

[Vasiliki99]

Yep I joined bladder health UK it definitely can be no biopsy is needed for the diagnosis of IC BPS I had diagnosis in southmead hosp

[Vasiliki99]

Best wishes