Has anyone here seen an endometriosis nurse if so what help can they provide?

[Nicjane]

Hello,

I am based in Wales and was diagnoised with endo when I was 18 via laparoscopy and now 25 and still have major issues. Even on the pill and implant I have chronic pelvic pain, fatigue, quite often pain when opening bladder and bowel, sometimes uncomfortable intercourse and low moods.

I may be seen to by an endometriosis nurse after my referal has bee complete I wonder if they can refer patients to surgery? i dont think any other treatments will work for me at this point. I have high strength cocodamol on repeat prescription but I know this is not good for my health long term.

Any insight be very much appreciated!

Thank you

[Joonaspryte]

I’m also based in wales, north wales. And even though I have been diagnosed with endometriosis, no one seems to want to refer me to to any endometriosis specialist, my gp says it’s only my gynaecologist who can, and my gynaecologist seems to just be wanting to handle my case herself.

I really feel I would benefit seeing one.

[Blackdog22 in reply to Joonaspryte]

I’m in south west wales and that is also my experience. I was diagnosed 4 years ago thanks to a 10cm endometrioma. I only had an mri as they were concerned about cancer. They planned to remove my ovary in open surgery. There was no discussion of there being further lesions. There was no discussion of referral to a specialist.

I went to a specialist privately, only because there was no nhs surgery happening during Covid. He removed the endometrioma while saving my ovary. He removed lots more lesions. And he did it all keyhole.

It’s the one thing I thank covid for as I didn’t know i should have had access to better options than what I was being offered.

[Nicjane in reply to Joonaspryte]

For me the specialist centre is out of my health board so they won't let me see a specialist gynecologist even though I have really problematic symptoms. Apparently all health boards in Wales have an endometriosis nurse I had to go to my GP to get a referral to a general gynaecologist to then get referred to endometriosis nurse has I have been discharged from secondary care for awhile. If you are under secondary care already you can apparently self-refer? It is not much information for patients on getting the care. Wish you the best!

[Blackdog22]

following as also in wales and have never been offered contact with an endo nurse

[Nicjane in reply to Blackdog22]

I went to my GP to get a referral to a general gynaecologist to then get referred to endometriosis nurse. If you are under secondary care already you can apparently self-refer? I have had issues where they lost my email for months with the already 4 month waiting list to be seen to so it has been a bit of a challenge for me so far, don't give up though definitely contact GP about it if you can

[Joonaspryte]

I read the nice guidelines in regards to endometriosis, and apparently anyone with diagnosed or even suspected endometriosis, has right right to access an endometriosis specialist.

[M1673402]

I have seen a specialist and had surgery, also have an endo nurse - in my experience she has not been at all helpful, but she will pass info on to the specialist for me so I imagine this might be the case for you, good luck and I would advise you to be really clear with what you want as they can very quickly fob you off!

[Nicjane in reply to M1673402]

Sorry to hear it was not a positive experience. I really want another surgery I really hope they help me get a step closer.

[Leahgal]

Hey. I am based in Hampshire and my Endo nurse has been amazing! She has a lot of knowledge and experience, she is caring and compassionate and often things of things I haven't tried yet. The first time she called me we chatted for an hour. Don't write off any support offered until you try. She is also a fast track to my consultant so that is an advantage too!

Hope this helps and good luck. X

[Nicjane in reply to Leahgal]

That is really good to hear! Did they refer you to any pain clinics or anything simular? I really want and need another surgery and I hope the endo nurse will help me get a step closer. x

[Leahgal]

I haven't needed pain clinics as my consultant has been great and just prescribed what I need and I use the pain meds as I need to. She is useful for getting through to the consultant and any escalations as well as being someone to talk to who tries to help. Give it a go as you never know.