Bladder problems getting me down

[Samy]

hi, I was wondering if anyone could give me advice please.. For anyone who has has bladder endo how was your recovery after surgery ?.Before surgery dec16 I had bladder pain when I went for a wee , it was so bad I sometimes used to pass out. I had blood in my urine every day and pelvic pain everyday which was excruciating. Before my op I had incontinence which included urgency and occasionally leaked at other times. It may sound silly but one of the most important things for me when I decided to finally have surgery was to stop the incontinence. I had a nodule removed from my bladder wall and was told that I had to have stents because my urethra was damaged by the endo and that some urine was travelling back to my kidneys. After surgery I anticipated being better, I understood that this was not going to cure my endo but I did expect to have a better quality of life. Boy was I wrong !!!. I do not get the blood in my urine everyday anymore that went on for about 9months but it stopped. Yes the urgency is better but I still have stress incontinence and it's got worse, Everyday things like hoovering , walking upstairs and sometimes just moving in a certain way cause me to leak. Ive been discharged from urology as I had another cystoscopy in October and they said it was my uterus pushing in my bladder and that it was a gynecology problem, the endo specialist reckons it's nothing to do with endo but my MRI taken before the cystoscopy said that their may be some recurrent bladder endo. I try to do my pelvic floor exercises everyday and it may sound weird but sometimes I can't physically do them It feels strange and it makes me feel sick with pain. It's so humiliating I have to keep changing my clothes and I have now totally lost my confidence as I am paranoid that I am going to wet myself all the time. I'm due to have a urodynamics test soon but I was wondering if anyone else has experienced this. I just don't know what to do I have pelvic pain kidney pain everyday, no one seems to want to help me. I personally think I need to be seen by a urologist too but they don't don't want to know. Oh I would also say that the recent MRI said that I also have adenomyosis too could this be causing it ????. My head is just bursting, Thank you for reading xx

[Starry]

So very very sorry to hear you've so many issues and are stuck between pillar and post xx

My bladder endo was only mild and on rather than inside the bladder, and it's the one thing the surgery did work for, no more interstitial cystitis, urgency or frequency. I think my distorted bowel and the nodule itself was definitely putting pressure on it so I do wonder if they have a point about removing the uterus pressure somehow.

If it's bulky that can be a sign of adeno I believe. But then you're drifting into talking about the h word which is a really big radical step and not right for everyone.

Thinking of you xxx

[Samy in reply to Starry]

Hi starry thank you for your reply. I did mention what the urologist said about the pressure to the gynecologist but he dismissed it and said it wouldn't cause my incontinence that's why it's so confusing. I am hoping the test will give me some answers soon. hope you are doing better now, I noticed that you are back to work, I hope it's going well.xxx

[Starry in reply to Samy]

Yes, I didn't have incontinence among my symptoms so I'm sure they're right on that score. Though I didn't have near prolapse scale pressure as it was just my bowel. Fingers crossed the extra tests will show something up and give a clear direction xx

Thanks for remembering. It's a surprising struggle given its so very long since my surgery. I am battling very severe chronic fatigue though. I could never make the original 8 week to full time plan so have just had to renegotiate a 3 month half time contract with my boss. Thank god she is still being supportive. I'd have been forced to give up by now if she wasn't I suspect. I worry about the medium term future. It feels like nothing will ever be the same again.

Take care xx

[Catmum]

Hi

I had endo inside my bladder and the pain of urinating could make me vomit. I had my bladder resectioned in July and then had uretal stents in for 6 weeks (which I found really uncomfortable )

Since this my pain is much better but I have overactive bladder syndrome which is annoying. I haven't got incontinence issues apart from a little dribbling at times.

I am so sorry you are going through this at the moment. I appreciate how exhausting and upsetting it must be. Thinking of you x

[Samy in reply to Catmum]

Hi thank you for your comments, yeah I had stents too they are horrible things I'm hoping I won't have to have them again anytime soon. Good to hear that your surgery gave you relief from your pain, hope it stays that way xx

[Ju1ieAnn in reply to Samy]

Hello samy, sorry to but in on your post! I hope you don’t mind me asking.... how long did you have the stents for? I have just had them put in and experience terrible pain. How are you doing now and how long since your surgery. I was told back to work in 2-6weeks. Am almost 2 weeks post surgery and have been feeling really rotten and nowhere near well enough to return to work but worried about being off... I never take time off sick!! Thank you and sorry again for butting in! Xx

[Samy in reply to Ju1ieAnn]

Hi JulieAnn, I had the stents for 6 weeks and the catheter for 3 weeks. At first I thought it was the catheter that was causing the pain but it was the stents. They made me feel sick and when I went for a wee I had terrible spasms. I can only say that 2 weeks is not long at all to feel better after surgery and although I understand that you may not want to take time off your health has to come first, if you go back too early then it may take longer for you to make a full recovery. I hope you start to feel better soon xx

[Ju1ieAnn in reply to Samy]

Aw bless you, thank you for replying! I had the stents out on monday! Wow, intense pain but massive relief!! You are an 😇 coping all that time with them! Two weeks was quite long enough for me!! They had managed to intwine themselves together apparently so maybe was why I felt such pain and discomfort! Your experience sounds horrendous..... bless you, are you with a specialist centre? If not it may be worth seeing if you can get a referral to one. Xxx

[Samy in reply to Ju1ieAnn]

Hi yes I'm with a specialist centre which is why Its so annoying that I'm not getting anywhere. I'm going for a test soon which hopefully will give me some answers what is actually wrong with me. I hope your recovery goes well take care xxx

[Ju1ieAnn in reply to Samy]

Aw bless you samy, you too xxx