Interstitial cystitis : May I ask if anyone... - PBC Foundation

PBC Foundation

9,385 members7,989 posts

Interstitial cystitis

Jennyhadenough profile image
5 Replies

May I ask if anyone has this?

I’m just stacking up medical issues.

I’m very concerned that this will be my next diagnosis.

Written by
Jennyhadenough profile image
Jennyhadenough
To view profiles and participate in discussions please or .
5 Replies

Hi Jenny

Unfortunately, we do seem collect a list of conditions. It’s not nice and I don’t think any of us will ever get use to that . I know for me , when I get overwhelmed, I try and concentrate on one at a time. Take care xx

lleake61 profile image
lleake61 in reply to

Exactly what I’m in the midst of. Great advice. Be well.

Jennyhadenough profile image
Jennyhadenough

My Dr said that I don’t have it and, that I shouldn’t worry about it. I read that Urso can cause painful bladder but my liver specialist said no. I was in the hospital for two days in late Feb with this pain. I had a procedure last week, that I had before but never had pain like this before. I ended up going to the emergency room because I couldn’t walk. The pain was real bad. My urine culture always comes back negative for UTI, when I have this pain. Well this time it came back positive. The ER doctor that took care of me in ER was a special doctor. He sort of had the doctor House personality going on. He apologized for it, but he said that he gets his point across. He said that I had a doozy of a UTI. It still doesn’t explain my constant pain. This bladder thing started before diagnosis of aih and pbc. My liver enzymes elevated during a yearly physical 4 years ago, and this caused me to put aside continuing investigating my bladder pain. Aih and pbc so far are still stage 0. I am thankful for that.

Thank you for responding.

periwinkle88 profile image
periwinkle88

Jenny, have a look into histamine intolerance. It's something that can affect the bladder. I have it. Now that I've reduced histamine in my diet and with supplements, I no longer have to pee all the time, which is especially nice at night. drbeckycampbell.com/interst...

Jennyhadenough profile image
Jennyhadenough in reply to periwinkle88

I just googled histamine intolerance. I have a lot of the symptoms but I don’t eat the foods that are listed. However the corticosteroids, “budesonide and prednisone” was a medication that I had to take for four years. I haven’t taken steroids of any kind since last summer. I do still take Azathioprine, and, of course Urso. I also have autoimmune hepatitis. My last blood tests was amazing. My alp was 59.

Alt and ast was and has been perfect for four years. I reacted quickly to meds.

My alp was always high end normal until last blood tests.

I do eat a lot of beets. I love pickled beets. That was the only thing on the list of histamine intolerance. Pickled anything.

My 23 year old daughter is beginning to concern

me. She has an autoimmune and, she now has to see a urogynocologist.

I had a lot of bladder polyps before diagnosis of pbc and aih. They are all gone now. I’m wondering if it was the steroids that shrunk them.

I am so thankful for the support groups. If it wasn’t for these groups I wouldn’t know the questions to ask my doctors and what is normal aging and what is related to my autoimmune and what I need to have evaluated.

Thank You for your response. I will definitely ask my dr next week about it.

You may also like...

Irretractable itch tried every lotion and medication

I’m on 100 sertaline.. sleeping tabs zopiderm bezafibrate and I take pirating. I’m feeling so...

ALP levels at diagnosis

Hi - I’m being monitored on suspicion of PBC. I’m curious for those that were diagnosed at an early...

Liver biopsy is it necessary?

So, I’m sitting in the hospital waiting for someone to come explain what’s happening today with my...

Has this ever happened to anyone

I’m going to my liver specialist tomorrow . First time in many years i’m somewhat concerned, my bili

Anxiety medication and PBC

Hi, just want to preface this post by saying I’m seeing my doctor at the end of the week but I’m...