2017 MRKH Day in Ann Arbor, MI

This past weekend, Lee Bram & I drove up to Ann Arbor Michigan (9hrs, 500mi) to spend the weekend with my fellow MRKH Warriors. We went last year for the first time and it was a great experience so I knew we had to come back. My BFF Allison lives in Michigan and even though this was only our second time meeting, we've talked daily for over 3 years, so it was great spending face time with her and her lil munchkin too.

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Friday after lunch we met Allison and her family for a swim at the hotel pool...something Bram was excited about! For dinner we had invited some ladies to our hotel lobby to hang out. As much as this is a medical conference...its more about the social aspect for many of us "veterans!" Its great "meeting people" for the first time even though you already know everything about them from online, and meeting new friends each year. After dinner I got Bram to sleep back in the room and snuck out for another 2 hours of chatting, laughing and crying while Lee slept with him, he was exhausted after driving all day!

Saturday morning we headed over to the conference while our husbands stayed back at the hotel entertaining our little ones. It was a jammed packed day from 8:30am-4:00pm... running over break times and going well past the scheduled end time, so much information! Its amazing that they put this on completely free of charge for attendees, even lunch is included! They do such a great job, especially since it's only its 6th year!
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During check in I made it a point to really mingle and especially go up to the young girls usually with their moms standing by themselves unsure what to do. I met one this year that was diagnosed only 3 weeks ago!! I can only imagine she will have a much better experience with her diagnoses by getting the support this early on. I didn't even know a name for the condition for several years!  

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Once in the auditorium the doctor gives a detailed but brief overview of MRKH and any new medical developments or research. This is great for the newly diagnosed and parents/partners, but for us veterans...its a big long for our liking, we know "vagina vagina vagina." ;-) One thing I meant to do but totally forgot is to take a tally of how many times the word "vagina" is said all day... its gotta be an insane number! 

The morning breakout session is by age and connection (MRKHers, parents, partners). I'm obviously in the "older MRKHer" group and last year was dominated by "baby talk" this year it seemed people were really struggling with other aspects of their life, which may or may not be related to MRKH.... but I guess everything in life is related somehow! It was an emotional 2 hours. We all went around the room and shared something, anything we felt like sharing. Some were inspiring, some were heartbreaking. What's amazing is we can all relate in one way or another to each other. There is an instant connection. Such an amazing supportive group of ladies.  Lots of hugs and tears.

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During lunch with doctors that host the event have an "Ask Anything" session where you can write a question on a piece of paper and they'll answer it anonymously.  Things like orgasm, weakness of the pelvic floor,  vaginal length,  & surgery techniques were all discussed. 
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The afternoon sessions were broken out by topic/interest. My BFF Allison was co-leading the "Surrogacy" topic with a local RE so I stayed in that one to lend support and also provide guidance to anyone interested since I've been through it and started the "Mothers with MRKH" FB group (admins of the group pictured here).

Parents and partners were included in these sessions and it was great being able to provide guidance and support for those interested. They had 2 of these sessions at 20 minutes each, but it seemed most people stayed put for double the time in the same topic, 20 minutes just isn't enough time to get the basics! Other topics included: Adoption, vaginal creation, sexual health, and art therapy.

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The afternoon is normally the "tell my story" presentations by MRKHers back in the auditorium.  Last year I told my own surrogacy journey (blog post). This year a Mom & daughter team told their diagnoses story, and a courageous MRKHer spoke about how training and competing in an Iron Man Triathlon gave her the strength to come to terms with her MRKH. 

In the evening BYMRKH invites people over to the house they rent for a social gathering. For me this is the highlight of the conference weekend. We had about 35 people in the house. All talking in various groups and it gives you the ability to break off into smaller groups to talk about specific questions or concerns that maybe came up that day at the conference. The conference is tons of information, very emotionally draining (in a good way!) and this social event allows for decompression and connection. It's common to see people hugging and comforting someone crying in one room while others are laughing and drinking in another. Perfectly exhibiting where various people are at in their journey.  Lee handled Bram most of the time letting me talk with almost everyone there. Two younger girls came up to me and asked several surrogacy and inducing lactation questions at one point and Bram even came over and asked to nurse then! 

On Sunday morning Lee took Bram swimming with Allison's husband and kiddo while we chatted for about an hour. We talked about coming back next year and how we hope we can work with UM and BYMRKH to make the conference even better... possibly a room block at a specific hotel for better networking/gathering? A bigger space for the evening social event? Some new topics or discussions? Who knows!
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​Then we took pictures together to compare to last year and we headed back home.  

2016

2017