Sharing Experience before diagnosis

[summer_sun1992]

I have suffered with period pain all my life and NHS would never look into it further. I have now been able to go private. I have recently had two ultrasounds. They have found a lot of lesions on my left ovary and fluid surrounding it. My left ovary doesn't move freely either. I have always had extremely bad pain during my period but never at any other time of the month. I do have a few clots that can be quite big. The main thing for me is the period pain, it is generalised front and back but particularly bad on my left side which would make sense given what they have found.

I am yet to be diagnosed, they do suspect endo. I am awaiting my next consultation to see what the next step will be.

I am really worried about any invasive surgery and what could happen next and wondered if anyone could share their experience? whether anyone else has the same issues?

Thanks

[BlackPugs93]

Hello,

I think my experience is slightly different to others. I’ve had bad period pains, passed big clots occasionally and sometimes go through pads/tampons but never did anything about this as thought it was normal. I’d been off hormonal birth control for 4 years after being on contraception for nearly 10 years.

I went to my GP in July 2022, had ultrasounds etc and they found a dermoid cyst on MRI in April 2024. I had severe pain which I thought was the cyst so they put me on the urgent list for a lap.

I went private due to the pain I was in and had the laparoscopy in June. During the lap they successfully removed the cyst but discovered uterine abnormalities and endometriosis. My gynae did not remove the lesions due to its location and the guidance has changed for surgical excision of endo. This was not reported on my MRI initially so it was a surprise. She had a gynae radiologist look at the MRI and it was all on there🙄

I’m still trying to find a treatment that works for me. I got put on Dienogest which I stopped due to thinking it had caused eye issues but turned out it didn’t (still undergoing tests with neuro). Then trialled tranexamic acid and mefenamic acid to take on my periods which helped but I now get pain at other times of the month. In December I got put on a low dose combined pill despite having migraines with aura (gynae said it would be ok due to it being 15 years since my last migraine). However within a few days I had the worst headaches so stopped taking it. I need to book back in with her but I’m waiting on further neuro investigations so will wait for them before booking her.

What I don’t understand is prior to the surgery I only ever got slight ovulation pain and period pains. Whereas since the surgery and finding out I had endo, I get pelvic pain more often 😞 I hoping soon to find a treatment that works for me!