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The shocking news

Posted by Shylo Van Gass Wheeler on 2011.12.13 at 21:47
In August we took our 11 year old to the er with the thought of appendicitis.  They did an ultrasound and then turned to a CT.  The good thing was it wasn't her her appendix but the dr said we needed to see our primary care because they found something unusual in her results.  Her uterus was extremely small for her age.  Not sure what to think we called her primary dr the next morning and she reviewed the results.  The news was shocking, she had a piece of tissue where her uterus was suppose to be.  My wonderful dr was on top of it.  There was one pediatric gyno in new mexico and she called them, she was out of the country at the time by my dr followed through and talked to her and informed her of the situation.  SHe then made an appointment for us and everything.  I think we were in shock.  We didn't know what to tell our happy, wanting tons of children daughter what her future held. I researched all I could find.  During this we were dealing with her eating issues.  So she was having a lot to deal with.  We waited until a few days before her appointment with the specialist before we told her.  A month before we had to tell she had some food alleries and peanut butter was one of them, she doesn't eat meat because of sensory issues so this news to her was beyond comprehension for her, she cried a lot.  Because of that reaction we were afraid to tell her the upcoming news.  SO my husband and I found the time by chance with her and we told her basically that she would not be able to have kids in her tummy, she would never have a period.  WHat else do you tell an 11 year old.  As a mother my heart was torn with the loss that she will face as she gets older.  I took her to her appointment and the reviewed the ct results but would not do a physical exam because of the shock it would be to her.  So we are waiting for a couple of years then she will sedate her to do the physicl exam if needed to not cause any undo stress.  But the results was that she has a long trial ahead of her.  SHe has no uterus and no vaginal canal.  It tears me apart knowing of the pain she will face with the social and the physical aspect.  Our goal as parents is to allow her to accept this issue not as a disability but something that makes her unique and special. It will become a part of her daily life.  There is not a lot of info for kids this young being diagnoised, so I am sure there are parents out there dealing with this issue.  I am starting a blog to journal and follow our lives as we deal with this for the many years to come.  Right now my husband and I feel like we are floating along a rapid river without a life jacket.  We have our faith and we have each other as we step forward.  Thanks for listening, it is hard to talk to "normal" people about this whose lives have not been shaken by this issue.


jenn1224 at 2011-12-15 02:59 (UTC) (Link)

I think that it's great that your daughter was diagnosed so young. Most of us get diagnosed as teenagers when we're more self-conscious about our bodies and uncomfortable with anything that makes us feel different.

MRKH only has to be a big deal if you make it a big deal. It never caused any problems for me socially - it's not something people have to know about if you don't want them to. I'm now 30, happily married, and about to start the process of adopting. The fact that I'm starting a family in through adoption doesn't really feel like a loss to me since that's the reality I grew up with. In fact, I consider myself lucky: most people i've talked to who adopted when through a process of trying unsuccessfully to have kids and I'm glad I never had to go through that.

If you have any questions or concerns, or if your daughter (now or at some point in the future) wants to talk to someone with the same condition, please let me know.
(Anonymous) at 2012-09-05 17:25 (UTC) (Link)
We just found out this morning that my 17-year old daughter has no uterus and no cervix. She does have ovaries (polyscystic). Appointment with the specialist isn't for another 14 days. I am feeling quite helpless and scared. Can you tell me anything? There was another post from a mom whose daughter has medical issues she thinks is related to this condition. More scared now then before I got on internet.
jenn1224 at 2012-09-05 19:20 (UTC) (Link)
I obviously don't know anything about your daughter's specific situation, but most of the people I know with MRKH have gone on to live relatively normal, healthy lives. I also have no uterus or cervix. I also only have one kidney. Other than the obvious (I don't menstruate and I can't get pregnant), MRKH doesn't affect my health in any major way. I'm happily married and in the process of trying to adopt kids.

The news is always a shock, and it's normal to feel helpless and scared. If you or your daughter want to talk, let me know in a comment and we'll figure out the best way to exchange contact info.
(Anonymous) at 2012-09-05 22:09 (UTC) (Link)
I think as a mother we go through our own grieving period, but we have to be strong and be loving and accepting ofwho our beautiful daughters are. I have read those scary and very negative reactions on the internet and it amazes me how so many were treated in the most negative inpact. My daughter is beautiful and amazing and just because she has this issue doesn't change her. We are telling her what she needs to know based on her age. She just turned 12, so by the time she gets older and more aware of her issues, it will just be who she is in a positive light. I wish you the best. As a mother there is a lot of concerns because we see what the world can be like, so I give her the skills to accept and love herself for her complete self. Don't read all the horror stories make your own story and make it positive and loving. The shock wears off and you learn to go on.
Shylo Van Gass Wheeler
Shylo Van Gass Wheeler at 2011-12-15 03:34 (UTC) (Link)


Thanks for all the support so far, I have only been on for a couple of days. Our goal as parents is to make our daughter as comfortable and understanding of this issue. In time the shock will wear off and we will be able to breathe. It is great to talk to other people who are facing this issue, it helps me prepare for when the tough questions come from our daughter.
(Anonymous) at 2012-03-09 19:56 (UTC) (Link)
We have just received the same news. Our daughter is also 11. We are struggling with how to tell her. We found out originally because of a urinary tract infection. The Dr is suggesting sedating her for an exam in the coming month. We aren't sure if the timing is right or not. Thanks for the blog.

Shylo Van Gass Wheeler
Shylo Van Gass Wheeler at 2012-03-10 05:16 (UTC) (Link)
I sent an email I hope you recieve it. If not please let me know, because I feel it might be great for our girls to maybe get in touch with someone their age. It is tough. We went to a specialist but she wants to wait a couple of years, until she is older then she will sedate her and do the check, but it is unnecessary until then. I am sorry that you are going through this emotional rollercoaster. My heart aches for you guys and all you are feeling.
(Anonymous) at 2012-04-06 09:41 (UTC) (Link)
Hello! I'm not sure how to begin this, so I'll just start in.

I was 12-13-14 (can't remember exactly) when I found out I had no uterus. My mom and I both heard the news at the same time from the doctor. At first I was shocked, but almost immediately I settled into the thought that it was just another thing that made me unique. I found out just around the time when my friends and I were all stressing out about starting our periods, and frankly I was very relieved that I would never have one. I ended up having to reassure my mom about it as we walked out of the doctor's office; she was more upset about it than me.

I'm 18 now, and still feel the same way about it. The biggest thing that I would suggest is to stress the fact to your daughter that she can still have children. The only thing that makes me sad about having MRKH is I will never experience the profound emotions of being pregnant. But then I think "you know, it's only 9 months out of a lifetime. It's not even the biggest part of being a parent. If I adopt, I would love that child just the same. And besides, who really wants to go through labor?"

I've read some accounts of women who were diagnosed with MRKH as a child, and their parents reacted too seriously about it, and ended up putting unneeded stress on the child. Like Jen1224 said, it's only a big deal if you make it one. Sometimes it's okay to be lighthearted about a serious subject such as this. Unless it causes your daughter health problems, I would really suggest not going to the doctor or specialist for it until she says she's ready to.

This is just my personal experience, and I hope it helps in some way. :)
Shylo Van Gass Wheeler
Shylo Van Gass Wheeler at 2012-04-06 22:49 (UTC) (Link)
Thanks so much for hope and knowledge that we are doing the right thing and that she will make it through. We love her and we don't stress her out with it. Being a mother isn't about being able to carry your baby, but about the love and nuturing you give your child. She is unique in her own personality. For all the struggles she has in her life she has the best and amazing personality ever to carry her through. We will deal with each stress as it comes, and not add added stress to her life.
Thanks again, I am proud of how you have dealt with your situation, it seems at times it is harder on the parents. Good luck in the future and you will be an amazing mother one day.
kiran1958 at 2012-06-25 09:43 (UTC) (Link)

There is nothing to feel bad or make your child feel that there is something drastically wrong. Pls dont bother about the social aspect as absolutley no one has the need or the right to know about your childs personal life except her partner.

The vaginal canal can be constructed and she will be able tolead an absolutely normal sexual life . She will also be able to have children via surrogacy if her ovaries are working.

Pls do not make your child feel that this is a big deal as its not!

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