endo diagnosis

[Beeee2023]

I am currently waiting for surgery to confirm I have endometriosis but I already know I have with all my symptoms and ultrasounds have shown sticky adhesions and scarring, as the NHS waiting lists are terrible I’ve waited since October 2021 to be seen I had a gyno app and wasn’t really told much just that I’ll be sent for another scan and nothing about surgery has anyone else experienced this?

[CryBaby91]

Hi Beeee2023

Sadly yes lots of us just get dismissed and forgotten about because endo is so hard to effectively treat, what works for one might not work for another etc. Few questions just so we can clarify some things.

1. Have you been placed on a waiting list for the surgery? You will of had a letter and also a "pre surgical appointment" where you have some basic tests and forms to fill in before you are placed on the waiting list. If this hasn't happened then you will not be on a list I'm afraid, because you need to be declared "fit" for surgery.

2. Is the surgery just to diagnose or will you have treatment too? Your gynae should tell you if it is a diagnostic laproscopy + or - treatment.

Also ask if they plan to do ablation or excision. Ablation is often used but isn't very effective and the endo frequently just grows back. Mine was back within 3 months

[CryBaby91]

Oh love sadly it sounds like they are fobbing you off! Are you in the UK, most importantly are you in England? Because any advice I would have would be based around NHS England (it is different across the UK, and drastically different abroad), and I don't want to confuse you if you're living in a different country.

Technically atm surgery is the main way they diagnose endometriosis, though it can be diagnosed by a BSGE specialist via some scans IF they see something on there. Adhesions can happen with conditions other than endometriosis, as can cysts. So obviously to be completely thorough they would need to do the laproscopy. Please get in touch with the PALS (patient liason service) at your hospital and make a complaint about the gynae, he can not leave you like this and just shove you on the pill when that MASKS symptoms. It does not cure endo. I was left on the pill for years and my endo just got worse and worse. If you don't have a PALS then Google "NHS *insert hospital you attended* make a complaint" and it should take you to where you can make one. Ask a friend or family member to read your complaint and make sure it makes sense, punctuation, spelling etc. Just so you can be as clear as possible, long paragraphs with no punctuation will possibly get jumbled by the person reading your complaint, so try be concise and clear.

If you also Google endometriosis uk charity you'll find the website for endometriosis uk who run this group there's LOADS of info on getting a diagnosis, help for pain, diets etc. Read through and take control of what you can change,try diets etc. Anything can be better than nothing! Xxx

[ccfd9]

There was some research done some years ago that showed it took on average 9 years to be diagnosed with endometriosis. That meant that many waited longer. The figure did show some improvement but no doubt Covid did for that. Have you tried looking for alternative solutions, like nutrition, there is a book “Endometriosis: a key to healing and fertility through nutrition” endometriosis.co.uk