IC or Painful Bladder Syndrome - Ulcers

[Kazarie31]

I have been suffering with IC for about 6 years and whilst most days I cope with the pain, these last few days have been agony. I had a cystoscopy when I first started to experience pain in my bladder. The results showed I had ulcers or hunners lesions on the wall of my bladder. The consultant (male) initially said a lot of it was in my head but I explained that due to the pain I had to go to the toilet more often because if I held it for too long I’d be in agony.

The ulcers were cauterised in a 10/15 minute procedure done under general anaesthetic and it was hoped that would sort the issue. It didn’t. They came back. The consultant assured me that the most he’d ever had to do was on some one 4 times. I’ve now had 6 ops and awaiting a 7th. I’m on solifenacin to help relax my bladder, I’ve tried all sorts of Vitamins like aloe Vera, d-mannose, nothing seems to help.

In all my research, I’ve yet to find someone who’s IC included having ulcers. Has anyone ever experienced the same thing?

Hi I'm so sorry to hear your in such pain I have ic also but I don't have the ulcers, it's a painful thing to have, I had a uroligist who was useless thought I was over reacting about my pain and amount times I needed to use the toilet , have you been in contact with bladder health UK they have been great source of info for me , I have had to fight for everything from pain releif to treatments it's soul destroying at the min I have started bladder installs called iAluril I'm being taught to do these myself at home the first one gave me great releif,I get 6 one a week then 1 per month after that, I also am on Amitriptyline 30mg for pain releif and help me sleep I take d mannose also and estriol cream , I follow the ic diet also I have had to research all this myself as my uroligist just said take paracetamol which didn't even touch my pain , I still get flares even when I'm on all this and following the diet, its a horrible thing to live with I hope you get releif soon, my next port of call is to go see the Harvey Street experts on embedded uti infections as we could have embedded infections in our bladders apparently ic suffers ,bladder health UK have sent me loads of info re this, take care sending hugs and hope you get treatment soon to help you.

Thank you so much. I’ve made a private appointment with a top urologist to see if I can get any better answers. I tried Amitriptyline but it didn’t help much and just made me so sleepy (could probably use it now to help sleep). My dr has up’d my solifenacin and given me a localised estrogen cream to try also. I’ve had lots of advice about installations so think I will push to go down that route and I’ve also found someone who’s had injections directly into the bladder ulcer and she said that works. Has it done once a yr or when she feels a twinge. I think I see some light at the end of my very long tunnel.

Keep pushing til you find an answer that will help you iv found a uroligist now who listens and wants to help me hence the bladder instills iv just started I was in remission for couple years after bladder instills before he's assured me these new ones are even better as thicker and coat the bladder to stop irritation and have no side effects like Elmiron tablets would have ie loss eye sight hair loss that's all I would need is to be bald and blind on top of a dodgie bladder lol keep faith you will get releif at some point iv also heard the botox injections are very effective for some take care and remember your not on your own with this at beginning I though I was only one had this as my old uroligist just kept saying strange symptoms if no infection showing in culture teats then I started researching and found so many people in the same boat as myself I wasn't going mad it's a real thing bladder pain syndrome or ic