help! 14 month waiting list...

[VioletCoffee]

I was hoping to get some advice because I'm really struggling with my symptoms and have just been told it's a 14 month wait for my gynaecology referral. So I officially have varicose veins around my ovaries that a private MRI found, under the NHS I had an endometriosis negative ultrasound, MRI and lap but all of them indicated cysts on my ovaries (my private scan said ovaries appear polycystic?). Anyways long story short, I can't afford treatment privately as I have had to give up working full time because of my symptoms (I can't stand for long because of leg pain, I get crippling lower back pain, bloating to the point I look pregnant and lower abdo/pelvic pain). I've been on every single birth control, none of which stopped my periods or helped my symptoms and the only thing that helped was my private prescription for dienogest which I can no longer afford and have run out of. I asked my gp to refer me for treatment for my pelvic congestion syndrome back in August and after hearing nothing for months called the clinic and was told I likely won't hear anything until the end of 2025. I'm at a loss on what to do because I can't work a regular job because my pain is so unpredictable and constantly had sickness attendance meetings at my past jobs to the point I had anxiety I would lose my job eventually (at the time, I had no diagnosis either). I know this is a page for endo so I don't know how many people have PCS but any advice would be greatly appreciated. Also, I'm only 23 and it's genuinely ruining my life and stopping me advancing in doing things I want to do. I don't know if the polycystic ovaries mean PCOS either, and I guess I won't know until the end of next year at this rate, but I'm already worried about my chances of having children (I have vaginismus too which doesn't make it any easier) so want to freeze my eggs if there's any likelihood of issues... but again, I don't know if I even have it 😅

Anyways, I got my first period today after running out of dienogest and have been bedbound pretty much so feeling extra sorry for myself haha 🤣

Sorry for the super long rant, it's been years now of this and I'm very tired of it all. Frustrating as well seeing all this stuff on the news about the waiting lists for gynae referrals so of course I know we're all pretty much in the same boat and just crying out into the void. If anyone else wants to vent in the comments, go ahead 🩷

[Simo7]

Hi,

So sorry that you’re suffering so badly. I have to be quick but didn’t want to read and run. If the dienogest helped can you ask your GP for it? Or ask for a referral to. BSGE centre, it will still be a wait but maybe once you’re referred you could contact them and ask for the dienogest prescription? I known it’s not a long term solution but temporarily may give you a little reprieve? It’s a bastard of a disease, wishing you well 💖