Please help I'm looking for advice

[Eilidh15]

I started getting symptoms for endometriosis in 2015 after my 2nd child. They put it down to ibs it was this for years until 2019 when I couldn't take the pain anymore felt like I'd been battered by Mike tyson, 50 urine tests later and lots of antibiotics they realised that's not what it was. Was sent for countless ultrasounds which showed nothing of course. Eventually ended up in hospital vibrating with the pain and they took me serious got referred to a gynaecologist in Inverness had countless meets with her waited 22months on the NHS for a lapascopy even though she kept telling me it was chronic pelvic pain. Had to eventually go private put myself is 3.5 grand debt for a lapascopy and removal of endometriosis best decision I've ever made they FOUND it!! But fast forward 4 months after the op and its back told gp who got back in touch with gynaecologist who said it was impossible it was back and sent me to a sexual health gynaecologist who offered to put me through the menopause again which I refused as its a lot a lot on the mental health. I went down to see the private doctor again who recommended a hysterectomy and is completely on my side about it 8.6 grand private which I can't afford. I've been trying to get a hold of my NHS gynaecologist for 5 weeks not and she won't call me back or nothing 😭. Feel like I'm banging my head against a wall. What can I do?

[Lindle]

Are you in England and do you know what stage/severity your endo was at the lap? You should have been given a discharge note with at least a summary of the details.

Did the surgeon have endo specialism? It certainly isn't impossible for it to be back or for some to have potentially been missed. Unfortunately a hysterectomy isn't necessarily going to be the solution unless there is a problem with your uterus.

[Eilidh15 in reply to Lindle]

I'm in Scotland. No I never got a stage written down but it was found in my pouch of Douglas. Yes she was an endo specialist. That's what she said sometimes it's so minumum you can't see it and that's why she could of missed it but my NHS gynaecologist disagrees who doesnt specialise in endo. I just don't know what to do. I can't deal with it anymore it's really affecting my mental health

[Cailleach]

Hi, sorry you have been though so much. Do you know if your Inverness Gynae has a ‘special interest’ in or extra training in endometriosis, or if there is another Gynae you could see who does? I had a look at NHS Highland website but there is zero information on endo that I can see,

There is an NHS Endometriosis Centre in Aberdeen (specialist centre) which would be your nearest, if you are in the Inverness area, NICE guidelines say that you should be referred there if your endo affects your bowel, bladder or ureter. Your report from your previous surgery should help. I am not sure how these guidelines work in Scotland, or whether there would be any leeway in referring you, you could ask your GP.

Your GP could help in writing another referral letter to gynaecology detailing your current symptoms and asking for you to be seen rather than you trying to chase the person up yourself.

Given that you were offered menopause inducing hormones, I assume you have tried other hormone treatments like the pill, coil etc ( or they are not suitable).

Have you explored all the options for pain relief from your GP?

As Lindle said, hysterectomy (presumably leaving your ovaries) might not help a great deal unless you have adenomyosis or very heavy bleeding.

This is a horrible illness unfortunately with no guaranteed treatment which works for everyone. Sorry I can’t offer more in the way of suggestions x