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Joined Oct 17 2013
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uterus didelphys help

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Mother of a 13 year old girl recently diagnosed with uterus didelphys.

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Reply Leanna
10:42 PM on April 6, 2016 
Hey how is your daughter doing ??? I would love to hear more, because I'm going through the same
Reply Darci
11:22 AM on October 17, 2013 
My 13 year old daughter was recently diagnosd with uterus didelphys and what they believe to be "blind hemivagina". Sydney also has renal agenisis (which we have known about since she was 9)?all of which are ipsilateral (all occurring on the same side of the body) which leads me to believe that at some point she will be diagnosed with OHVIRA or Herlyn-werner-wunderlich syndrome.
Syd started her period for the first time in February 2013 and each month seemed to come with increasing pain in her abdomen/pelvis as well as her back and cramps more days in a month than not. This led us to a local gynecologist (love her). Dr. wanted to start her on bc, assuming it was her body trying to regulate her hormones since she had recently become a "woman". Along with that she ordered a sonogram, which we had that same day. The sono quickly revealed that we were dealing with something a bit more than hormonal cramping. It was discovered that Sydney's reproductive organs were not "normal", but the radiologist was not quite sure what he was looking at and could not give us a good answer, only that this was "very rare", and the sort of thing "that you only see in books"!!
After further exams, an mri, and a trip to Chicago to see a reproductive endocrinologist/surgeon at Prentice Women's Hospital, to see Dr. Mary Ellen Pavone. What we know so far from what Dr. Pavone was able to see from the MRI, is that tt appears that Sydney's "right uterus" does not have a cervix and/or is blocked. This means that the right uterus is doing its normal monthly thing, thickening and then shedding, but there is no way for it to get out, so that uterus is becoming more and more distended each and every month and this is causing her quite a bit of pain in her pelvis/abdomen as well as her back. They are attempting to stop her monthly bleeding with a continuous 3 month round of bc, but this was the first month and apparently it did not work because she is currently on her period which is why she in an extraordinary amount of pain! Yesterday was the first day that I can ever remember Sydney ASKING me if she could stay home from school....she loves school and hates missing, so this to me is a sign that she really must be feeling poorly....along with the nightly outbursts of tears :(
I spoke to one of the Dr.'s yesterday and they have not heard back from their radiologist yet. This is critical because his/her interpretation of the images will determine what the next step will be. I am guessing (and hoping) it will consist of some better imaging so they can get a better picture of her abnormal reproductive anatomy and can come up with a surgical plan. Dr did say that they would most likely be looking to remove the entire blocked (right) uterus. The MRI also revealed that Syd has an ectopic ureter attached to and communication with a gartners duct cyst on the wall of her vagina. This will require a urologist to also be involved in her case/care.
I guess we are just looking to be able to find someone that can relate. From what I have read, they can create a cervix or an opening for the blood to escape what is now the blocked uterus and that she may not have to have it removed. She is in so much pain lately that she just wants them to "fix it" and at this point could care less if they take it all out!