Hello all! I’m 24 and have been told I have PMOS (formerly PCOS) as well as pelvic congestion syndrome.
I was diagnosed with PMOS at 14 when I didn’t have periods… at the time I was a distance swimmer working out 6x a week, doing kiddy triathlons and was also incredibly naive to everything, so I remember having to drink a lot of water, getting an ultrasound, my mom being upset at the doctors office, and then not discussing it. I didn’t have a clue what was going on and just assumed the lack of period was related to my athleticism. I was put on the combo pill 2 years later for acne but wasn’t a perfect user.
Enter college (note: i was incredibly stupid and am not proud of who I was then, I was just depressed and anorexic fr). I was having so much unprotected sex and would miss periods for 5+ months, always getting negative pregnancy tests. Assuming the lack of periods was just malnutrition- at the time I had a pee test at the hospital and had a reasonable ketone presence in my urine. One day I finally think im having a miscarriage, turns out a complex cyst had burst. I have never been pregnant.
I’m told to stay consistent with my pill and have since been a perfect user with one lapse- one week I couldn’t get a refill after skipping a period and in that time a cyst grew large enough to twist my ovary for 6 hours. My dumbass thought it was appendicitis and I had a class that was graded based on attendance, so I went while in pain. I go to urgent care after class, they send me directly to the ER, and I’m told it was ovarian torsion that ended up undoing itself after 6 hours (I had a CT with contrast and a transvaginal). In one week a complex cyst had grown large enough to twist my girl on the right (that was jarring). They tell me I must be a perfect user of le pill because in my case this will only keep happening (#sorry I skipped my period one week I’ll never do it again). No surgery as the tissue wasn’t necrotic and I was in a golden window, though at the time I was full on thinking they could take out my ovaries and I wouldn’t be bothered, I just wanted to stop dealing with it.
I go home in May (a few months after that event) and see my normal gyno for an exam and another transvaginal. This time I have a cyst but it’s smaller (cuz birth control) and they say I have pelvic congestion syndrome. I knew I’d be moving abroad that coming fall, so I was kind of keen on fixing any problems if I could before I moved to start my new job. They basically told me to not worry about a thing, just keep taking my pill. No intervention needed.
Well I move abroad to a country with free healthcare and end up having to take another pill. My gyno back home isn’t amused as it’s a higher dose and somehow different than the combo pill back in the US. I don’t want to expose anything unsavory so please no one tell! but basically I end up having to get my US pill mailed to me where I now live.
I don’t have any crazy symptoms- pelvic pain after standing too long, lower back pain, some unfortunate bowel irritation and also every time I have sex I bleed, without fail. Don’t know what that’s about or if that’s related, but those are my symptoms present day. To me, those are mild compared to stories I hear from others, so I’m not overly miffed. No typical PMOS symptoms minus the ovaries- weight is a bit hard for me to lose but im 145, 5’4 and muscular/toned.. overweight on the BMI calc but again i do work out 5x a week and muscle weighs more than fat blah blah blah. A little stomach chub but nothing that screams I need a GLP1/I have insulin resistance (I don’t think). I also don’t have any varicose veins anywhere except in my pelvic region apparently.
HOWEVER (sorry for the giant lore dump) I would like some advice. Is there anything I can realistically do for any of these issues? Should I be pushing for my PCS to be looked into further as I’m 24 and have never been pregnant? Should I leave it be? Objectively I’m not thrilled I have to take the pill every day but I don’t mind it and I am a perfect user. Should I just wait for these issues to subside or are there tests I should be pushing for? I just have no clue and my gyno seems to think that as long as I’m on the pill I’ll be fine. I’d just really like some womanly advice and community with all this jazz going on in my body. By nature I’m not one to question my doctors, but life recently has taught me that I need to stand up for myself more and I’m wondering if this is one of those cases.
Thank you in advance for anyone who says anything, this is my first post here! I love women and I know we are all warriors! 😁