Posts by Maria Edwards81

I’m 25 now, and I’ve been seeing different gynecologists for checkups since I was 16 or 17. Because I was a virgin back then, they couldn't perform ultrasound exams, and everything they could feel during a physical exam seemed perfectly normal. They just blamed my missed periods on stress or a late onset of puberty. Once I hit 18, everyone started getting seriously worried. After bouncing between a bunch of doctors who had absolutely no clue what was going on or what pills to prescribe, I finally got referred to a specialist. That’s when she ordered a laparoscopy, and we finally discovered the real reason behind my "missing" periods.
What am I waiting for? I'm just waiting for this hormone therapy to actually work and for me to finally bleed—if that ever happens. I don't have many options here. Most general OB-GYNs just spout nonsense. I know they don't see cases like mine every day, maybe not ever, so they just get lost. My regular gynecologist is fine for standard checkups, but she simply can't give me the answers I need, and she won't go out of her way to fight for me.
The MRKH syndrome has nothing to do with what I have. 😢I might have gotten a little too ahead of myself thinking I’d actually find some answers, but I haven't found a damn thing. Maybe I should just accept it, like you said, and realize I might never find the answers I'm looking for.

I still don't have an official diagnosis 😢 My case definitely isn't MRKH syndrome, but maybe it's some weird hybrid. So far, I’ve run every gynecological test under the sun. I even had a laparoscopy, which basically revealed the reason I haven't started my period is because I don't have ovaries. I have a uterus, but it's small and underdeveloped. They put me on hormone replacement therapy, and now I'm just waiting. My gynecologist has basically given up on me; she won't refer me anywhere and seems totally checked out. Meanwhile, I'm desperate to put a name to this—like, why was I born without ovaries? I don't believe aliens stole them from me 🤣 I'm asking about the tests because I want to take matters into my own hands and go get them done myself, but I have no clue what I actually need. If you don't mind, could you tell me which doctors you saw? Did you ever see doctor Begović?
On top of all the gyno stuff, I did karyotyping, and the result was a normal 46,XX female karyotype. I'm wondering if there's a way to do a deeper genetic analysis, or is karyotyping the absolute peak? Is that the most accurate thing you can do?
Also, besides that, I want to know if you're on hormone therapy too? And how are your bones holding up? That's the thing that's honestly killing me with worry. 😢
Pita

Patrizia Bok. 🙂 I’m seriously glad you posted this. You’re going to be a huge help to a lot of women out there.
I have one specific question for you if you don't mind: what kind of tests did you actually have to go through—besides the standard OBGYN stuff—to get an official MRKH diagnosis?

Look, I’m no expert on this syndrome. I actually just stumbled onto it recently because none of my doctors could give me a straight answer or even tell me what was actually wrong with me. Honestly, I have no clue if it's this specific syndrome, or maybe something else like Morris or Swayer, or just some weird combination of the two. I haven't done any deep dives or seen a specialist for it yet. If you want, hit me up—maybe I can help you out. 😁

I’ve been hunting for this specific thread on the forum for ages.
You have no idea how happy I am to finally find it, but at the same time, it sucks seeing posts from girls dealing with the exact same thing. If anyone else here is going through this, please just hit me up via DM 😉. I'd love to swap stories if you're up for it. I don't have anyone in my social circle I can actually talk to about this, and frankly, I don't want to deal with their judgment anyway.
I never had a real period. Around age 15, I had this pathetic little bleeding that lasted maybe two or three days, and then nothing. Since then, I’ve been waiting for it every single month, but ten years have passed and it hasn't shown up once. I just assumed it was a matter of time—that every woman eventually gets her period. It didn't really start hitting me until I was 18, which is when I started seeing gynecologists and running hormone tests. My levels were a mess; my estradiol levels made it look like I was already in menopause. Since I wasn't sexually active, they wouldn't even do a standard exam; they used those prenatal ultrasounds instead, and the doctors kept saying they couldn't get a clear enough picture that way. Everyone kept telling me everything was fine, that all my organs were there. After those exams, they put me on Dabrowski, which did absolutely nothing, so they sent me to a specialist. He recommended a laparoscopy, and honestly, my life has been upside down ever since.
The results were a disaster. They showed a uterus that was small and underdeveloped, but the ovaries and fallopian tubes looked okay. As for how this happened? The explanation was pretty vague. Basically, they hinted that my mother might have taken or eaten something during pregnancy that caused this defect, and that was it. No other explanation. You have no idea how hard this is to write about. I haven't told anyone except my immediate family. I've been living in this weird headspace, trying to suppress it and pretend everything is normal, but I can't. It's constantly on my mind... and the worst part is the feeling that there's no fix for any of this. I've been on hormone therapy for almost a year now, and it does nothing except cause breakouts all over my face and body and give me tons of cellulite. I'm terrified of aging and osteoporosis. I already had a bone density scan and I have osteopenia, and I'm only 25. I'm scared of these hormone pills and what they do to me, but I feel stuck between a rock and a hard place... I don't have a choice.
Anyway, I'm rambling... I wanted to ask if anyone knows a good specialist who handles these specific issues. Can anyone give me a recommendation? I really need a second opinion. Also, would it be smart to drop the current therapy and try some alternative medicine that's less harsh but does something similar?
Best to everyone 😉