Posts by fadedbear22

Hey there! 🙂

Can I change my username to Patty?

Thanks!

Actually, no—you can't use special characters when changing it.

Amanda Stewart45 said:Seriously...

Hey 🙂

How are you doing? What's new with you lately?

(Just thought I'd jump back into this thread, maybe someone else needs some info or just wants to chat)

Hmm.. what are you waiting for?

As for me, I still have my ovaries—one is a bit sluggish, but they both work, so I’ve never actually needed hormone therapy. My uterus is small and underdeveloped too, just like yours, and honestly, there isn't much anyone can do about that kind of thing...
I went through karyotyping myself, and I got the exact same results.

Sweetie, if you aren't happy with your gynecologist, just find a new one!
I went through so many doctors before finally finding someone who actually cared about me first, and then turned out to be a specialist who truly wanted to help.
That wonderful man is retired now, but I really don't know where I'd be without him.

How long are you going to keep struggling with this lack of knowledge regarding your own body and health?

And I should add... I totally get that you have a million questions. Like, how, why, why me, when??? I had them all too, being in the same boat... but the truth you'll eventually have to face is that some answers—the ones you're looking for to make it all make sense—just don't exist.

Maria Edwards81 said:Hi Patrizia Bok. 🙂 I'm honestly so glad you reached out, I think you're going to be such a huge help to a lot of girls.
I was wondering about one thing, if you don't mind sharing—what kind of tests did you have to go through (besides the OBGYN stuff) to get the MRKH diagnosis?

Hey 🙂

uh, this was all back in the "last century"😉 so honestly, I don't remember most of it... I'd probably need to dig through my old files...
There were minimal gynecological exams, mostly because there just wasn't much to check at first. They didn't really get the full picture until they did a laparoscopy. Other than that, if I recall correctly, they ran everything—all the hormone panels, even some kind of DNA test (don't ask me which one, I have no clue), X-rays, ultrasounds, and basically an MRI of my whole body, even though they were mainly focused on my abdomen.
If I remember anything else, I'll post it here🙂.. but please, feel free to ask anything!

How about you? Have you been diagnosed?

I found this video on YouTube about MRKH... maybe someone wants to take a look (though it might not be for everyone)
http://www.youtube.com/watch?v=LvC2K...eature=related

A quick rundown on MRKH:

"Basically, MRKH syndrome means a woman is born with incomplete development of the vagina, cervix, uterus, and fallopian tubes, even though she has the female genetic code (46xx). We still don't really know what causes it. So, it’s this anomaly where a woman is born without a uterus, a cervix, and in a lot of cases, the vagina, which means she can't carry a pregnancy. Some women might have tiny, rudimentary bits of a uterus or tubes left over. Everything on the outside looks completely normal. The frequency of the syndrome changes depending on which study you read... but it's usually estimated at about one in every 5,000 women. It happens somewhere between the 4th and 6th week of development. It also involves other related symptoms, like kidney issues, bone problems, or hearing loss—some of us deal with those, and some don't. They all stem from the syndrome itself."

Taylor Fowler3 said:Thanks! 🙂

🙂
No problem at all
If I can make things even just a little bit easier for any girl or woman out there... it would honestly mean the world to me.
Unfortunately, I know way too much about this syndrome... so...
I'm here for you

silentfalcon14 said:Hey, I was just wondering... is there anyone else out there dealing with MRKH syndrome?

Amanda Stewart45 said:Thanks for trying to help, but I guess there's nothing there either... maybe.

Taylor Fowler3 said:Is anyone actually around in this sub? I was hoping to chat about this with someone who might know a thing or two. Thanks!

Maria Edwards81 said:I don't know that much about the syndrome yet, honestly. I only just discovered it because my doctors couldn't really give me any straight answers or tell me what was actually going on with me. I guess I'm not sure if it’s that specific syndrome or maybe something else like Morrisov or Swayerov, or even some kind of mix... I haven't exactly gone through all the tests or seen a specialist for it yet. If you want, reach out—maybe I can help you out. 😁

Here I am. 🙂

Feel free to ask me anything! I'm all ears.

Justin Chase22 said:me too, I guess...

Hey Justin Chase22... if you ever want to chat or if you have any questions... I'm right here.🙂

I know everything there is to know about this syndrome since I live with it myself... I'm here if anyone needs any info