Severe emdermetrois : Hi ladies This is my... - Endometriosis UK

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Severe emdermetrois

Nicola1987xxx profile image
•8 Replies

Hi ladies

This is my 1st post 😮

I had my op 10 days ago and was told had severe emdermetrois it’s stuck in between my bladder and womb with is causing me to wee a lot and also a lot of pain 🥊

They could only get 3/10 of it due to where it was so now been referred to a specialist for emdermetrois and they think will damage my bladder etc and need a catheter fitted till it repairs it’s self I’m very anxious about it all just hoping people have advise

Many thanks xx

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Nicola1987xxx
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Daniellaj profile image
Daniellaj

Hi sorry i cant help you but im in a similar position i had a lap on 20th sept & beforehand i said to the surgeon can you check my bladder cos thats probably the worst place i get my symptoms & afterwards she said i couldnt check your bladder cos your uterus is pulled forwards & attached to your abdominal wall with adhesions (mainly on the left side) so i couldnt lift it up properly to get a look at your bladder underneath but she said on the little bit of a gap that she could lift up she could see there was quite a bit of endo in my uterovesical region (the gap between womb&bladder) but 2weeks earlier i had a bladder biopsy at a different hospital that came back as endo inside my bladder (which my gynae surgeon didnt know i had at the time cos didnt get results til this month). Ive got a follow up with her on 8th nov cos she said id need more surgery to removed the rest of the endo & adhesions, seprate my womb from abdominal wall&remove left fallopian tube. At the time she said she'd be doing my next op but now i have the diagnosis of bladder endo aswell she cant touch that with her only being a general gynae so im hoping that when i go on the 8th she'll say shes referring me to a specialist & i'll prob be having the same op as you x

Peren profile image
Peren in reply to Daniellaj

Ask your Dr or the gynae to refer you to specialist centre. Look one up and find the specialist you want to see - don’t waste your time with a general gynae as they do not have the skills to treat you. X

Daniellaj profile image
Daniellaj in reply to Peren

Thank you. Theres a gynae called Tony Chalhoub at newcastle RVI hospital (Bsge centre) who im hoping my gynae will refer me to but im not holding my breath. Before my lap the general gynae said if she found mild endo on the outside of my bladder she'd treat it herself but since then its been confirmed as deep infiltrating inside my bladder so she should refer me but ive got a feeling she'll just give me more painkillers or offer the coil again then say i'll see you again in a few mths. If that happens i'll go straight to my GP & see if she can refer me x

Peren profile image
Peren in reply to Daniellaj

With he severity of your endo you have a right to be seen by who you want. When you go back or before go to you Dr and insist to referred to he Dr you have chosen. DO NOT let them fob you off. X

Daniellaj profile image
Daniellaj in reply to Peren

Thank you x

Nicola1987xxx profile image
Nicola1987xxx in reply to Daniellaj

It’s so long winded isn’t it and u just don’t know till have op I surpose ?

Hope all goes week for you xx

Daniellaj profile image
Daniellaj in reply to Nicola1987xxx

I know the waiting seems to drag on forever. Thank you & hope all goes well for you too & you havent got to wait to long xx

Peren profile image
Peren

As per below below find an endo specialist and asked to be referred. You can ask your Dr to refer you or the general gynae you’ve been seeing.

Don’t be put off by what the general gynae has said to you, find a specialist with the skills as they can treat you with far less risks. They’ll have to also involve other specialist surgeons but they know what they are doing and have the skills and experience. A general gynaecologist is just that and they can’t treat endo adequately x

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