Living with MRKH syndrome
in Women's Health ·
My daughter is 15. Her doctor is currently recommending a laparoscopy to confirm what the MRI showed—MRKH, an atypical form where the kidney has a specific shape. We’re looking at heading to Vienna for follow-up. Aside from that, there aren't any other issues related to MRKH.
However, before that diagnosis, she received a slightly more serious diagnosis that isn't actually connected to MRKH. Since her treatment for that just started working, we’ll probably delay the surgery for a little while...
It was obviously a massive shock, especially since we found out about both diagnoses in such a short window of time. But as time passes, we're trying to accept it and look on the bright side. We're getting there, one tiny step at a time...
My daughter isn't alone!!!
There are girls with this syndrome right here in the States too. I'm really interested in hearing about your experiences. It feels a lot easier knowing there are others out there 🙂.
Did you undergo a laparoscopy, or was the MRI enough (like they do abroad)? Did you have karyotyping or endocrine testing done? Also, is there a specialist in the US who focuses on patients with MRKH? Her doctors are wonderful—both her local GP and the specialists at the hospital. They've been incredibly kind and professional, and they pinpointed the cause of her amenorrhea so quickly. There wasn't much guesswork involved, but since this syndrome isn't common, maybe someone else here has more experience...
If anyone feels uncomfortable posting here, you can reach me via email: mrkh.bih@gmail.com
We've watched all the videos online and read stories from other girls. There are support groups, they even get tattoos; they're MRKH warriors who realize a diagnosis isn't the end of the world. Most choose adoption or use surrogacy in states where that's an option. Then there are those who simply don't want children and choose to share their love with someone close to them, finding other joys in life. Of course, having a partner matters, but people don't bond just to have kids; they bond because they love each other. You accept what you're given and move forward. If people can't accept it, then they aren't worth it anyway...
However, before that diagnosis, she received a slightly more serious diagnosis that isn't actually connected to MRKH. Since her treatment for that just started working, we’ll probably delay the surgery for a little while...
It was obviously a massive shock, especially since we found out about both diagnoses in such a short window of time. But as time passes, we're trying to accept it and look on the bright side. We're getting there, one tiny step at a time...
My daughter isn't alone!!!
There are girls with this syndrome right here in the States too. I'm really interested in hearing about your experiences. It feels a lot easier knowing there are others out there 🙂.
Did you undergo a laparoscopy, or was the MRI enough (like they do abroad)? Did you have karyotyping or endocrine testing done? Also, is there a specialist in the US who focuses on patients with MRKH? Her doctors are wonderful—both her local GP and the specialists at the hospital. They've been incredibly kind and professional, and they pinpointed the cause of her amenorrhea so quickly. There wasn't much guesswork involved, but since this syndrome isn't common, maybe someone else here has more experience...
If anyone feels uncomfortable posting here, you can reach me via email: mrkh.bih@gmail.com
We've watched all the videos online and read stories from other girls. There are support groups, they even get tattoos; they're MRKH warriors who realize a diagnosis isn't the end of the world. Most choose adoption or use surrogacy in states where that's an option. Then there are those who simply don't want children and choose to share their love with someone close to them, finding other joys in life. Of course, having a partner matters, but people don't bond just to have kids; they bond because they love each other. You accept what you're given and move forward. If people can't accept it, then they aren't worth it anyway...