Journey so far

[MillieKD]

Sorry for a long post - does anyone have the same issues/advice?

I have always had irregular periods and very extreme pain on day 1 of my periods (have to go to bed until the pain is over - sometimes feels like what I imagine labour contractions to be, in waves, & sometimes constant stabbing).

For nearly a year now things have been worse with other things - started with what I originally thought was a UTI. Bladder symptoms and also, my stomach was bloated and painful, and has been most days since, for months now. After many negative urine tests I was referred for TV ultrasound and urinary tract ultrasound. Had swollen kidneys, multiple ovarian cysts (to note by chance I was around ovulation time on the scan day. When I asked later how many cysts, my GP said it wasn’t stated on the scan report - it was just recorded as ‘a lot’ or ‘poly-cysts’), and on the other ovary twisted swollen veins, like varicose veins but on the ovary. Was referred urgently to urology and non-urgently to gynae. Nothing came from urology as my kidneys were fine at another scan, I wasn’t given a reason why they’d been a kidney issue (I put it down to maybe I had drank far too much water as I had constantly been told it was a possible infection and I needed to drink lots to flush it out, but unsure). I managed to get an endo specialist appointment after one of the urologists referred me due to the pelvic pain and constant bloating. At the endo appointment there wasn’t much discussion - I was simply referred for a pelvic MRI scan (without contrast dye).

The MRI showed a thickened uterosacral ligament. (I had a low back injury with sacrum pain in 2021 so I don’t know if this is what caused the thickened ligament or if it’s endo, as it’s a common endo site?! 🤷🏻‍♀️ ) I’m still awaiting the general gynae appointment to address the cysts and vascular issue but when I had seen the endo specialist they dismissed that I could have PCOS as my blood test hadn’t shown high testosterone (even though GP had said it could possibly still be PCOS) and said about veins ‘some women just have stronger veins than others’ (which I don’t understand as my GP had been concerned about the veins and called it Pelvic Congestion Syndrome). Frustrated with lack of clarity and whether I have endo and whether symptoms are endo related or not. I don’t feel strong enough for a laparoscopy atm, & I feel I need more clarity before pushing for this. I feel the bloating and pain suggests I could have endo…

Does anyone have Pelvic Congestion Syndrome? Or a thickened uterosacral ligament (if so was this from endo?) Considering a private route to have scans redone maybe.

Thanks 🙏

[11WildHorse11]

I'm new to all this, though I have enough issues. I had MRI with contrast and they saw the endo etc etc. However, for my spinal pain I went with a private scan company, as drs weren't interested. Company was scan.com and I managed to find one that was easy to get to and the cheapest. Had results of images next day, and report the day after. I am glad I done it as it brought up issues I would never have known about, except for the pain, and would have put them down to something else

Good luck, sometimes we just want and need to know

[MillieKD in reply to 11WildHorse11]

Thanks for the reply. Yes, it’s the half-answers but nothing solid, everything takes too long and we just want to know! Good luck too