How did people get there Endometriosis di... - Endometriosis UK

Endometriosis UK

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How did people get there Endometriosis diagnosis?

Nicolepat48 profile image

I have been struggling with endo like symptoms for years with only a recent gynaecology referral. This pain has resulted in daily pain killers. I don't understand how a doctor can prescribe an opiod pain killer regularly and not refer to gynaecology without a struggle. Im looking for advise on how to be taken seriously. I have completed a pain diary i have pushed more than my personality likes to be taken seriously and even been advised to go to A&E when I am have bad flare up's. I don't know what more I can do.

11 Replies

I'm sorry you've had so much trouble trying to get help. I would specifically ask to be referred to a gynocologist - if your gp refuses then ask for it to be noted on your records that you've asked and ask for a reason why they've said no.

Fingers crossed you get a referral soon xxx

Thank you so much for taking your time to reply I didn't think to ask for it to be noted! I am calling today to have my pain relief reviewed so I will mention this, thank you :) xxx

This is quite common and personally I have had it for years and years. It takes about 8.5 years to be heard - don’t worry this won’t be you. For me I can’t even think about how long I have suffered from 11-45 years old. With relief of 17 years when I had Mirena coils in after a lap and ablation.

Lack of awareness in GP’s is rife and it was mentioned in the recent parliamentary debate as an action step.

Try a different GP in the practice. Ring the endometriosisUK helpline for advice and guidance on how to advocate for yourself.

Don’t forget to look up the opening times on the website first. They are wonderful ladies x x x

So sorry this is rough, been there and feel for you 💗

Nicolepat48 profile image
Nicolepat48 in reply to 635703

I'll definitely give them a ring thank you for taking the time to reply. I was beginning to lose hope and felt I would have to go private but I will definitely give them a ring and hopefully get somewhere. I got advised to get the copper coil which was nothing short of agony getting put in and was told they perforated a nerve in my cervix upon entry. Womans health just seems to be a blurry area unfortunately xxx

635703 profile image
635703 in reply to Nicolepat48

I am so so sorry to hear of your troubles but we are here for you 💪🏻💛

Dee_EndoUK profile image
Dee_EndoUKModerator

Hi Nicolepat48

Sorry to hear you're struggling with painful endo symptoms.

If you're not satisfied that your symptoms are being properly looked into by your GP then you can find some really useful information about next steps in our 'Getting Diagnosed Information Pack' - this can be downloaded from endometriosis-uk.org/gettin...

In addition, as 635703 suggests, we do have a really useful helpline (0808 808 2227), which is run by volunteers who have personal experience of endometriosis. The helpline is open most days. The times it is open can be found at endometriosis-uk.org/helpline

Wishing you all the best x

Thank you so much I will definitely give the helpline a call, I really appreciate all the support. I looked at the getting diagnosed pack a while ago however was told by my GP that other things have to be tried first to build a case as to why I qualify for a gynaecology referral despite being on countless different contraceptions from a young age and being on regular daily analgesia for almost two years along with the usual hot water bottles and TENS machines. I feel a recent change in my ability to just be ignored so I know with the support of this group I will find the courage to be listened to.. Thank you so much again for taking the time to reply.

Little update, after a visit to A&E I phoned my doctor surgery and got another doctor than my usual one. He has adjusted my pain killers and referred me finally to gyneocology!! 🙌 Hopefully this is the first step in a diagnosis or even my journey of becoming pain free.

Vps1980 profile image
Vps1980 in reply to Nicolepat48

Glad you’re getting somewhere, I was on cocodamol for ten years, recently quit as neurologist said it was making my migraines worse (brutal withdrawal) so I’m now without pain relief 🥲 xx

Nicolepat48 profile image
Nicolepat48 in reply to Vps1980

How are you managing without relief? Im on naproxen, an anti sickness and cocodamol (but im really only trying to take the cocodamol when the pain in unbearable) xx

Vps1980 profile image
Vps1980 in reply to Nicolepat48

Trooping on lovely, trying to cope on paracetamol, it’s not easy, it’s not in my nature to relax which doesn’t help xx

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