No diagnosis but suffering from chronic severe pain

[Gabrielle-Hardy]

For the past 17 years I’ve had bad periods, only getting worse and worse, I’ve been on several pills, all didn’t help, I’ve had prescribed meds but none have helped either... I’ve had tests, scans and now I’ve been referred to a gynaecologist but that was over four weeks ago. I have all the symptoms of endometriosis but had to diagnosis and I’m feeling very confused, lost and lonely.. any advice for someone who’s depression is slowing taking over and I’m losing all hope?

[alexandramariex]

I felt like this!! You just have to persevere and don’t let them turn you away, you have a right to ask to see another doctor for a second opinion. They gave me nothing till I saw an endo specialist but they’re quite hard to come by. I found that the endometriosis uk website had quite a lot of good advice on this too, so maybe check that out? I also found talking to people in the same situation helps so much and this is the best place for this!! I hope you can find something to make you feel better and get some better attention from the medics soon x

[Gabrielle-Hardy in reply to alexandramariex]

Thank you for replying, I’m trying my absolute hardest to stay focused on getting the right help I need from gps/ hospital/ specialists

Thank you for the advice

[alexandramariex in reply to Gabrielle-Hardy]

Its so tough and mentally draining isn’t it, and theres no shame in feeling low. You’re totally welcome to message me directly if I can offer any support x

[hm89]

Unfortunately it is a very slow process. From my GP referral to my surgery was about 8 months and then I was only given 10 days notice before the surgery date! I am in London though so imagine the wait is shorter elsewhere. Good luck with your referral and don't let rubbish doctors fob you off!

[Gabrielle-Hardy in reply to hm89]

Oh my goodness 8 months!! That means I would be having about 16 periods just while I wait in that time frame, I’m in the south not sure if it’s any better here, I’ve chased it up but still no date as of yet

Just a waiting game which is frustrating... thank you for your reply

[hm89 in reply to Gabrielle-Hardy]

Yes, 8 months for this referral from a new GP to a new gynae.

I had my first referral at 17 (12 years ago) which took about 3 months for the first appointment but they said I had a "low pain threshold" and there is "absolutely no way anyone under 30 could possibly have endometriosis".

I went back to the same GP at 23 and said I wouldn't go back to that hospital so they referred me to the local private hospital (but on the NHS) and I had only about 2 weeks before meeting the gynae and had all my tests including a lap within about 2 months, however, as an NHS patient, they couldn't discharge me quick enough and would only do a diagnostic lap, they didn't treat anything as it wouldn't have fit into my scheduled surgery time.

I went to the Royal London (Whitechapel) hospital this year and it was worth the wait as they actually treated me properly!

A lot has changed in the last 12 years though and it is a much more recognised issue for young women so fingers crossed you get the treatment you need.

[Gabrielle-Hardy in reply to hm89]

Thank you so much for the information, I have no idea what they are going to suggest for me, I’ve already come to terms that if they have to take it all away that’s what I want, the pain has become so much I don’t want any of my reproductive organs but obviously it’s not as easy as all that

Thank you, all the best to you and take care of yourself