Endometriosis UK
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Failed surgery and no answers

After years of problems with endometriosis, I collapsed in July 17 and taken to hospital. It was decided that my right ovary needed removing as there was a large cyst and my right tube to also be removed as that was infected.

My ovary couldnt be removed as it's stuck to my pelvis. The cyst could only be drained. Only partial removal if the infected tube was taken.

On the left side, the plan was to blast the endometriosis from my left ovary but he couldn't get near it. My womb couldn't be helped either as it's deeply fused to my bowel. They couldn't even fit the merina coil in as the endometriosis has spread so much.

I have been sent home to recover as it wasn't keyhole and I'm back in 4 weeks. I feel totally hopeless and not a clue to what can now be done to help. I'm in daily pain. Any advice would be great

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Was this at a bsge accredited centre? If not you need to be referred as you have bowel involvement. The list is here:

bsge.org.uk/centre/

They are almost all NHS and either your consultant or your GP can refer you (though it's best to go armed with all the info as not all GP's know about them and not all gynaes are keen to refer even though they should). They can deal with endo that general gynaes aren't skilled enough to treat. x.

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I will look into that. I was just referred from the gynaecologist from my hospital to have the surgery done. I haven't seen anyone that specialises in endometriosis. I didn't even know there were centres for this. In my 20s there was very little help and now in my 40s, I don't know where to start or who to see. Your advice is really appreciated xx

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With Endo that severe you definitely need to be treated at a BSGE endo centre. XX They have surgeons with advanced endo excision skills training and who work in a multi disciplinary team.

Either your GP or surgeon can refer you. This is the NHS service specification explaining what they do and the treatment pathway

england.nhs.uk/commissionin...

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Thank you so much for that xx

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I can only echo what the others say about a specialist referral. I assumed all gynaes knew their stuff about endo but learnt to my cost that they dont always. My second op under a specialist was a world apart, my first surgery left me frightened and in crazy pain. Get some further advice

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Thank you. It's so nice to hear from people that really understand xx

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