Experience of endo on the bladder?

[SophJaz]

I had a stay in hospital recently. I had horrendous pain in my back where kidneys are and was struggling to urinate properly. Then in hospital I wasn't able to go at all. No one believed me and told me I wasn't drinking enough.So I kept drinking and when they finally scanned my bladder I had 500ml I couldn't get rid of, so they had to put a catheter in. They think its endo as they found some fluid on the outside of my bladder when I had a ultrasound.I had catheter for 4 days and now its removed my back pain is worse again & I feel a constant pressure on my bladder and still unable to feel when I need to go & go properly. Does anyone have any similar experiences or had endo on the bladder?

[Stk19]

Hello! Sorry to hear about your awful time! I had endo removed from my bladder and peritoneal in Jan 2019. Ever since I have suffered greatly with my bladder and pain but they seem to think my endometriosis is controlled by the injections as I don't have periods 🤷🏻‍♀️ funny as I havnt had periods since 2017. My issues are the opposite of yours though, I cannot stop urinating, I leak, wake in the night to go then even wake up wet, it's depressing, I'm 25! But endometriosis can effect the bladder in different ways, it could be inside your bladder. Ask for a cystoscopy and ultrasound of the bladder and kidneys, that should help find the cause. I hope you get help ASAP 🤞🏻

[Sarah001]

Hi, I'm not sure if my bladder issues are related to endo (although I am beginning to think they are!) after my second lap for endo 2 years ago (no bladder or bowel investigation) I went into complete retention and had a similar experience to you although I had no previous pain. Lots of tests etc. later and I was diagnosed with over active bladder and retention (as I go ALL the time and also never empty my bladder).

I've since had a medical device implanted for this but it hasn't helped at all - I think my bladder issues are to do with endo and not an actual bladder dysfunction... My symptoms are so much worse before and during my period and always have been but recently I've started getting pain upon urinating and also kidney pain during both ovulation and my period... Are these similar to your symptoms?x

[SophJaz in reply to Sarah001]

Hello, I'm so sorry to hear of your experience. It does sound very similar to me! Its so horrible to go into complete retention. I found that I suddenly started getting awful kidney pain after my last period and then it got harder and harder and more painful to urinate. I was in hospital and got told that I just wasnt drinking enough and that there's no way I'm in retention as Im like 23 and not 83! Then I went into complete retention so had to have catheter! Im still not quite right but I had catheter out not long ago & I'm still struggling sometimes. They have put mine down to endo because of the fluid they found & reluctant to do anymore tests. However I will keep pushing if it gets bad again. Ive started on zoladex injections to stop my periods in the hope that if it is on my bladder itl stop it growing any worse while I wait for next lap. It does sound that yours could be down to endo especially as it gets worse with your cycle and what they've done hasnt helped. I got told that they can never be sure until they open you up and have a look which is horrible and you've already had 2 done! I would defo go back to dr about this and push to see an endo specialist. Im so sorry you're going through this x

[Sarah001 in reply to SophJaz]

Yes its awful! If you are still struggling there are small caths that you can get from your GP and you can use at home and dispose of after use to make sure you are emptying your bladder!

I know its mad that they don't have a good look around but I think part of it could be ignorance on my part as I never mentioned the fact I go to the toilet non-stop as I always have done and at this stage I hadn't had bladder or kidney pain so they probably wouldn't have looked but I will mention it when I see my consultant in a couple of weeks.

Hope you manage to get your next lap soon and something gets sorted x