New to the UK need official diagnosis - Endometriosis UK

Endometriosis UK

54,464 members43,904 posts

New to the UK need official diagnosis

rh1984
rh1984

Hi,

I've recently moved to Mid Wales from Australia. I've struggled with periods pain and other symptoms for years and doctors fobbed me off with contraception or depression diagnoses.

Finally about 2 years ago a doctor referred me to a sexually health specialist who suspects endo. I was referred to a specialist physio, and Dietician to start trying to treat the symptoms. I was not able to have surgery through my specialist as I did not have private health cover. After having no luck with contraceptives (too sensitive to medications caused lots of other issues) she referred me to the public hospital for an appointment/lap (supposedly 3 month wait for app) . But I was in the wait list for 10 and hadn't heard anything before moving here to Wales for my partners work.

Now that I'm here I'm not sure the best way to move forward. I've heard I need to resister with a GP clinic? But I don't want to lock myself into a clinic if they aren't endo savvy? And what are wait times in mid Wales? Can anyone give advice about how I should progress?

Thanks

6 Replies

Hi

It sounds like the health systems are really different here. You need to see a GP to be referred to a gynae or specialist centre. If you've not been diagnosed with endo then you'll need to see your GP and explain (I'd really emphasise that it was suspected but you didn't have the lap due to insurance) the GP should refer you to gynae. You can't get referred to the specialist centre until endo is confirmed. It'll probably be a bit of a wait. It should be 18 weeks max but a lot of people have a longer wait. It just depends on your health board. Your GP may send you for an ultrasound and get bloods done but any more than that would need to be done through a consultant.

It's good to find a GP that's got at least an interest in women's health. If you contact your local health centre you can ask if any of the GPs specialise in this area. If so, then join, requesting that GP when you make appointments. If you end up not liking someone or a whole health centre, it's easy enough to move, you just register elsewhere, you're not locked in.

Also, you can look up the guidelines that Dr's use for endo. They're called NICE guidelines. If you Google nice and endo they should come up. You get them for most conditions. It's good to know this to help make sure you're getting treated the way you should.

I hope this helps but just ask is your not sure.

rh1984
rh1984 in reply to weekari

Thank you so much for your reply. To have a diagnosis of endo in Australia it must be confirm via a lap, so that's the same here? Do a lap then you can get a referral to a specialist centre? I'm dreading having to get a new GP to believe me and start the process again. Sometimes I wonder if it would be taken more seriously if I said I wanted to get pregnant (I don't)

weekari
weekari in reply to rh1984

The usual pathway is to be referred to gynae and they do the lap. I've just been diagnosed through mri by orthopaedics but that's just because my endo didn't present with typical symptoms and it was missed in the lap. Mine is not a typical case.

So many GPs are absolutely amazing. It was a gp that originally thought my stomach issues were gynae related and pushed it for me. She thought endo and she was right. I know it's difficult but it's going to be better for you if you view them positively and as a person who wants to help you. If you go in expecting to be let down, it tends to make that more likely. We usually only hear the horror stories, most of them are wonderful and care a lot about their patients. I hope you get one of those ones!

Oh and fertility hasn't been my concern either. I'm 40 and have never tried. So that's not been used for my referrals.

rh1984
rh1984 in reply to weekari

Thank you. You're right, I need to approach it positively as a fresh start

As weekari says; you'll need to register with a local GP whom is the main healthcare first point of contact for any condition / health concern / worry. They can then assess your situation and medical needs and if necessary refer you to a local hospital / specialist clinic where specialist consultants will assess your case.

With regards to endo, you'll need to register with a local GP, talk to the doctor there and mention that you'd like to be diagnosed - you will get asked all the health / symptom stuff you've been through before. They should then refer you to a specialist which may be a wait. The specialist will look at your symptoms in more detail and then discuss with you the next steps. If you would like a diagnosis push for a diagnostic laparoscopy at this point and ask if they can remove endo at the same time - eliminates need for two ops and two waits. Waiting times as it's NHS can be a while though.

There is private health care which of course costs; if you work most employers offer insurance as part of their work package, so that could help towards the costs.

rh1984
rh1984 in reply to luthien

Thank you, great advice. Definitely don't want two ops if it can be avoided

You may also like...