Endo in the bladder

[Heidi11]

Hi all, haven't posted on here in ages but could really do with some advice. Back in Feb I had a bi lateral oophorectomy/ hysterectomy. I was then referred to a uro gynaecologist due to severe incontinence that I had suffered for years, who did a rigid cystoscopy that showed endo inside my bladder. I then went for an MRI and have today been back to see the endo specialist who is adamant it is not endo. He did say he had to shave quite a bit of my bladder down due to adhesions and had to stitch my bladder but doesn't think that's what was seen on cystoscopy. I'm so confused as I'm still experiencing a lot of pain and urinary issues. Has anyone got any experience of bladder endo, I'm pulling my hair out x

[Stellauk]

I had endometriosis on the bladder. The consultant has to remove part of the bladder and stitch it back together.

My symptoms are UTI like problems lasts a few days at the end of my period. Going to the loo quite often. These have resolved since the operation. I had a catheter for 2-3 weeks after the operation though. My endometriosis specialist is also an uro gynaecologist so he is used to operate on the bladder.

Could you get your report from the uro gynaecologist to the endo specialist? They need talk to each other! They normally have inter disciplinary meetings every week.

Hope you feel better soon.

[Heidi11 in reply to Stellauk]

Hi Hun thanks for the reply, endo doctor examined me today and he said that you can usually feel a nodule if it's inside the bladder, was that the case for you and did you have a cystoscopy?

[Stellauk]

I had cytoscopy first and he did not see any endometriosis inside the bladder. The MRI also showed endometriosis on the surface only. However, when he did the excision the endometriosis was more severe. Hope this helps

[saffieb]

Hi

Can I ask what your symptoms are? How would you get endo in the bladder diagnosed? I'm worried I have endo in the bladder too. I get uti type symptoms monthly just after my cycle and get pain when passing urine. Increased urge to go, feels like it's gonna leak, pain when bladder is full but it's not really full etc. Are you guys in the UK? I'm not sure whether I need to ask for a mri. I had a ultrasound and nothing showed up.

How long ago was your operation? Could it be you need some time for your symptoms to settle? I have heard that bladders can need retraining if the muscles are weak or have been irritated?

[Kimberley_jane19 in reply to saffieb]

I'm having the exact problem as you but my doctor has put me on the pill to see if it helps but so far I haven't noticed any difference of it helping at all? Have they suggested to you to do pelvic floor muscle exercises? I found my bladder has only been like this though since they did my laprascopy back in May this year when they found endometriosis in my right ovary.

[saffieb in reply to Kimberley_jane19]

They haven't suggested it but I had a ultrasound on my kidney which came back clear so back to suffering this week completely unsure of what to do next!

[Kimberley_jane19 in reply to saffieb]

Same here😔 -hope your feeling better soon😊