bladder endo

[Harper666]

Hi, I've recently been diagnosed with endometriosis and had my first laparoscopy on Tuesday. They found my left tube was stuck to the wall of my uterus, they couldn't remove both bilateral endometriomas due to the sticky adhesions (surgeon had her limitations so drained them instead). I have adenomyosis on the womb but most worryingly the endo has attached my bladder to my uterus. I have read that endo on the bladder is rare and i'm wondering if anyone has been diagnosed with endo on the bladder and what treatment they have received or been recommended?

[Stellauk]

I had endometriosis invaded the bladder. The surgeon completely remove the lesion, stitched the bladder back together. I have to have catheter for 2 weeks. It is not painful just inconvenient. Overall it is nothing unbearable or too bad. My bladder is definitely felt much better after the operation. No pain when peeing or need to go to the loo too often. I would say the operation certainly improved my quality of life.

You need to make sure the surgeon is qualified to do this operation. Need a BSGE gynaecologist or urogynaecologist for this.

Hoe this helps.

[Harper666 in reply to Stellauk]

Thanks Stella, what you have said definitley helps and I'm pleased to hear that you have found some relief since you've had your op, that definitley gives me some hope. I've suffered with recurrent cystitis for over 25 years but i've only just been diagnosed with endo, which seems to be a stage 4 diagnosis. I was shocked to find that cystitus could be linked to bladder endo & whenever i take a urine sample it is always full of blood and protein. it's now only just becoming clear that the two could be linked. I will definitley ask my consultant about a BSGE urogynaecologist. Thank you so much x

[Stellauk in reply to Harper666]

Glad to help. Check out the new NICE guidelines re endometriosis referral to BSGE centre. You can find link in my previous posts.

Take care.

[Starry]

Endo inside the bladder is very rare. Endo on the bladder a little less so. You usually have a cystoscopy to find out it it is inside too. Luckily mine wasn't and I had it excised at a BSGE endo centre at the same time as bowel and vaginal and us ligaments and ovarian peritoneal excision .

My bladders improved a lot since the op

[Harper666]

Thanks for the post, its very informative. I'm glad to hear its made a big difference since you had the operation.

[Hidden]

August 2015 after my 4th lap i was told i now had endo on the outside of my bladder this was burnt off at the time. Before this surgery and findings I wasn't aware of anything as all my pain is centred around ovulation time but since this surgery i am very aware of it like peeing a lot and having to lean forward to completely empty my bladder and on days i have pain like a stitch type pulling pain over the bladder area that i assume is scar tissue and after 2 years more endo. I haven't been offered any other treatment infact i was never offered a follow up appointment after my surgery.

[Harper666]

Hi Newton, Im sorry to hear you haven't been offered a follow up apt and just been left hanging. I have heard stories like this before but I really dont understand how they can give you a diagnosis and not offer you a treatment plan, surely that cant be right! it seems in general there is no set procedure in place and it varies depending on which hospital you are treated at.

[Harper666]

Hi Lindle, Thank you so much for taking the time to give such a detailed response, you have been very helpful. This is all relatively new to me as I only registered on this site yesterday after having my first laparoscopy on Tuesday. Im finding im getting much more information from speaking to people on here and this will definitley help with the questions I will ask at my follow up apt, in 6 weeks time. Thank you so much x