Endo and intitstal cystitis

Just wondering if anyone else has been diagnosed with intitstal cystitis? My gynae consultant found this when he removed endo from my bladder. I have a appointment with a urologist next week for a urethra procedure, not sure I'm ready for another procedure I only had my lap 4 and a half weeks ago.

Apparently it's known as evil twin syndrome if you have endo and intitstal cystitis together together. Great.

Has anyone got had surgery to treat this and what did they do? I've literally no idea what to expect next week I just got told uretha procedure??

7 Replies

  • I have both, and it took years to find this out.

    I have Interstitial cystitis as well as endometriosis and adenomyosis. I had an 8 year remission of the interstitial cystitis, which coincided with me going on the combined pill. However it came back full force while I was still on the pill so not sure if that had anything to do with it. I now realise that a good half of the agonizing pain I suffered was actually the IC, but just assumed as did my gynae that it was all due to the Endometriosis.

    I had a cystoscopy to diagnose me which is a camera in the bladder, could this be what they are doing?, I had this done under a general anaesthetic as a day patient, they also did an ultra sound, and x-ray to check for any other problems as well as multiple urine tests for everything known to man, which were all negative.

    I was referred to an urologist after my gynae couldn't figure out what was going on.

    I manage Interstitial cystitis by doing food combining, which keeps it under control. The urologist gave me a diet sheet which meant cutting out spicy/acidic foods, as well as fizzy drinks and tea and coffee, this made a difference, but for me the food combining worked better, and didn't mean I had to eliminate lots of foods from my diet.

    A good site for you to look on would be the COB foundation, they have an IC forum, and are fantastic if you have any questions.

  • Ah thanks for the reply hun.

    I think I have suffered for years with IC too but I had my bladder stretched about 15 years ago as I kept getting utis and always thought the urgency and stuff was due to that.

    I had a cystoscopy done 4 weeks ago by my gynae consultant when he did my lap, just to see if my bladder needed stretching again and why there is blood in my urine. He said I had endo on the outside of my bladder which he removed but when he did the cystoscopy he said all my bladder was really small cos it was that infected. He tried to remove some but said as soon as he touched my bladder wall it started breaking and bleeding so he couldn't do anything and thought it best that a urology did the surgery. He mentioned ulcers I think, I was that out of it from the meds I can't really remember. He said my bladder was in a bad way, probably my own fault for not mentioning it sooner.

    I read some bits on the Internet that says surgery is a last option unless you have the hunters ulcers then they go in and remove them similar to the way they remove endo.

    I'm a bit worried about having more surgery so soon after my lap. I still don't feel fully recovered.

    Have they tried to treat your IC with surgery or just changed your diet hun?

    I agree that this has been alot of my pain too. After surgery they had to keep doing bladder scans and I am getting alot of pain in that area.

    Do you take any meds for it? I will check out that other forum.

    I didn't prepare myself for this I thought it was endo on the bladder and it would be removed and all would be fine at least for a bit.

    I don't know if I could cut out coffee and pop id never get through the day without my caffeine fix ha x

  • Hi, I feel for you. I had horrendous pains in my bladder, I had bleeding, burning, stabbing pains. I had a cycscocopy done they checked with a small camera and found lumps inside my bladder which was bleeding. Said it was cystitis. I was in a lot of pain and couldn't handle the test as my bladder was sensitive and I was already in pain. I suffered more pain after the test. I then had the lumps burned off and was pain free for a week but then my symptoms returned. I found out that I had Endo sitting on my bladder and was wedged in deep inside, I had adhesions my bladder was stuck to my bowels and overies. I had to have another op to remove Endo and adhesions and to unstick my bladder, bowels overies. I'm Still recovering from my operation. I feel much better now but I'm still getting a few light pains I guess that's due to the op. I have cut out wheat, gluten, dairy, soya and red meat from my diet it's been hard but worth it as I don't get bloated and my ibs has gone.

    Good luck with your test. Hope they found out what's causing your pains.


  • Oh dear hun. Sounds like you've been through alot. So you had surgery for your bladder. How long is recovery hun?

    I always thought my pain was due to my endo but since that's been removed alot of pain has gone it's now in my back and bladder which must be due to the IC.

    Not sure if I'm going to need more time off work after this bladder thing. I'm still off at moment after my lap 4 and a half weeks ago.

    I am going to have to give the diet thing ago. I did buy the endo diet book but I'm already underweight and that was mainly eating veg, think id disappear if I stuck to that Ha.


  • Hi, I was told my recovery would be about 2 weeks give or take another week, but that wasn't the case with me as they missed the massive Endo sitting on my bladder, my insides were a big mess everything was stuck together. I had my 4th op last year November.

    I didn't buy a Endo diet book, I just looked up what foods to avoid plus I spoke to other women on this site and gave it a try and it has worked for me.


  • I don't take any medication for my IC, although my consultant tried me on a strong antacid for about 3 weeks, but it made no difference really. When I have a flare, which is rare now, I take Vantage Cystitis relief Sodium Citrate sachets, which help it a lot. I also make sure I drink plenty of water.

    The book that made a huge difference for me is IC Bladder Pain Syndrome: The Alternative Medical Treatment for Interstitial Cystitis, by Dr Bill Dean. I realise that different things work for difference people so it's worth experimenting a bit with your diet, I stick to the rules in this book 70% of the time and I am fine. The IC diet personally made things better but not great, I hated having to give up fizzy drinks.

    I really didn't want to cut out lots of food groups as I am already a vegetarian and on the slim side too.

    I did not have any surgery for the IC, as so far I am able to control it by diet. I hope everything goes well for you. It may be worth calling your surgeons secretary so that they can tell you exactly what they are going surgery wise so you are prepared.

  • I have both. My urologist works alongside my specialist - he is amazing.

    Ask for Rinitadine - it's the medication given to people with stomach ulcers but it works for Hunners ulcers and severe IC as well - it has made a massive difference to me (the only thing that has!)

    I've had all the instillations with my last gynaecologist but my urologist says he has had much more success with his own 'recipe' not the branded drug company instillation. He uses local anaesthetic which really helps.

    He's based in Bristol Southmead if that's any use.

    Also, no coffee, tea, alcohol, coke or soda, spicy food etc - so boring, all the good stuff!!

    Good luck x

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