Advice please

Hi there I'm new to the group. I've had endometriosis for 13 years now, had every treatment there is and now it's come back worse than ever. Every day the pain is getting worse, I'm waiting to go back to hospital and the recommendation at the moment is that I have a hysterectomy. Has anyone else had one? Thanks in advanced x

[hayls]

Hi

Are you seeing an actual endo specialist? If you have severe endo and are at the point that hysterectomy is being raised and you have been suffering for so long you really really need to be seeing an endo specialist at a BSGE accredited endo centre and not a regular gynae that thinks they know a bit about endo. You can check by going on the BSGE website and looking up the accredited endo centres, there about 13 fully accredited centres accross the UK and a number of provisional al centres working towards the accreditation, you then need to make sure you see a specialist practicing at these centres, I would actually push to be referred to a director of one of these centres.

Hysterectomy is a very outdated approach and doesn't necessarily work in the long term for endo, my mum was endo pain free for a long time after a hysterectomy but it definitely hasn't been a miracle solution particularly if you need HRT etc but that's not to say it can be a valid option for some women but it totally depends on to your exact circumstances and the advice of an endo expert.

Have you tried radical excision of your endo? No lasers, actually cutting out the endo. I had severe stage 4 endo with uterus, bowel, bladder, ligaments, ureters etc all stuck together and ovaries upside down. I had radical excision and peritoneum stripped last year and within a month was almost 100% pain free when previously I struggled to leave the house. I'm now a year on and still pain free. It's a big op and takes a lot to recover from but doesn't have the long term implications of having a hysterectomy and in any event a hysterectomy would need to be combined with all endo being removed for it to have any success. My op was done privately but it is available on the nhs with the same surgeon who is a director of an accredited endo centre at a nhs hospital.

You've obviously been through a lot, having been in the position of having a standard gynae talking about hysterectomy being my only option I would hate for you to go down that route without first seeing an actual endo specialist and fully discussing the possibility of more modern endo surgery options. x