Advice please

[Ilovecats13]

I’m 25 from the Uk, I’ve always suffered from bad painful/heavy periods from young (I started when I was 9) I was put on the pill when I was 14 and was on it till I was 19ish during that time I didn’t get periods so was ok but it messed with me mentally ( also had a mini stroke) so I decided to come off, since then my periods have slowly been getting worse & this year there was a massive change, I have constant lower back pain, the worse period pains to the point im up crying/throwing up with it being so heavy and clotting, painful sex with the back pain and cramps intensifying after, i definitely think im infertile, crazy bloating when i get the cramps and so many other things. My doctors suspect’s endometriosis but in the Uk the wait is 46 weeks for a referral, I’ve decided to go private and have an appointment next week but I just need some advice on how everyone is managing the pain and the mental side as my anxiety is through the roof, I worry about everything, I feel so depressed from the constant pain I’m in day in day out, I’ve tried all different painkillers and nothing works. I’m a very happy positive person but this has truly popped that bubble, I’ve even had suicidal thoughts which I’ve never experienced before. If anyone has any advise please let me know

[RedCat24]

Sending love and I'm sorry to hear your struggling. I'm 33 and have been suffering for 2 year. My local NHS didn't believe it was gynae related (constant pelvic pain and down groin heavy periods painful sex, also 6 hospital admission in 8 month due to passing out) I was constantly gaslit that it was ibs I was constantly having to advocate myself as I knew it wasn't. They agreed to do a lap and said it was negative no endo and no problems so got discharged. I went bak to my GP and broke down into tears he refered me elsewhere but it's 56week waiting list that was November last year still waiting. I went private in May saw a gynae paid for a mri which showed adhesions and endo and paid for lap. My symptoms were calm for 3 months then I'm worse now with symptoms I never had before. Hope you get some answers soon x

[Ilovecats13 in reply to RedCat24]

Thank you! I’m sorry to hear you’re still struggling after all this time! I’ve been very fortunate that my GP referred me straight away but again the wait was 46weeks! Which is ridiculous!! Lucky for me I’m using my works private health care and am being seen next week with a consultant so fingers crossed they can help me in anyway. Wishing you well & for your symptoms to get better! It’s a horrible disease

[RedCat24 in reply to Ilovecats13]

It is. Very downplayed too. I hope your appointment goes well and you start to get some answers x

[Bakewey]

at your lowest moments it’s important to remember that you will get through this and although it doesn’t feel like it at the time, the pain is not left threatening.

For the pain, I’d suggest walking or light exercise- you may not feel like it at the time, but I tend to take a couple of painkillers and then go for a game of tennis/walk. Being busy takes the pain to the back of my mind.

It’s good that you are going for a private consultation as hopefully you will be set on a pathway that will suit you.

Good luck 🤞