UTERUS DIDELPHYS HELP

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Darci
Member
Posts: 1

My 13 year old daughter wasrecently diagnosed with uterus didelphys and what they believe to be “blind hemivagina”. Sydney also has renal agenisis (which wehave known about since she was 9)…all of which are ipsilateral (all occurring onthe same side of the body) which leads me to believe that at some point shewill be diagnosed with OHVIRA or Herlyn-werner-wunderlich syndrome. Syd started her period for thefirst time in February 2013 and each month seemed to come with increasing pain inher abdomen/pelvis as well as her back and cramps more days in a month thannot. This led us to a local gynecologist (love her). Dr. wanted to start her onbc, assuming it was her body trying to regulate her hormones since she hadrecently become a "woman".  Alongwith that she ordered a sonogram, which we had that same day. The sono quicklyrevealed 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 lookingat and could not give us a good answer, only that this was "veryrare", and the sort of thing "that you only see in books"!! After further exams, an mri, anda trip to Chicago to see a reproductive endocrinologist/surgeon at PrenticeWomen's Hospital, to see Dr. Mary Ellen Pavone. Whatwe know so far from what Dr. Pavone was able to see from the MRI, is that ttappears that Sydney's "right uterus" does not have a cervix and/or isblocked. 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 thatuterus is becoming more and more distended each and every month and this iscausing her quite a bit of pain in her pelvis/abdomen as well as her back. Theyare attempting to stop her monthly bleeding with a continuous 3 month round ofbc, but this was the first month and apparently it did not work because she iscurrently 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 shecould stay home from school....she loves school and hates missing, so this tome is a sign that she really must be feeling poorly....along with the nightlyoutbursts of tears :( I spoke to one of the Dr.'s yesterday and they have not heard backfrom their radiologist yet. This is critical because his/her interpretation ofthe images will determine what the next step will be. I am guessing (andhoping) it will consist of some better imaging so they can get a better pictureof her abnormal reproductive anatomy and can come up with a surgical plan.

 

 

October 17, 2013 at 11:42 AM Flag Quote & Reply

sarahb
Member
Posts: 1

Hey, I am 18 and at 13 I went through the same thing your daughter did. I was burdened with horrible pain for a long time. Finally it got unbearable to a point i could not go pee. The blood had built up in one of my uterus' so much that i had to get it drained. I have since been put on bc so i dont have a period at all. They have no other options for me and sadly the bc makes me have morning sickness all the time. My doctor says i will stay on bc until i decide i want to have kids and then they will do further test to see my options if any. 

October 22, 2013 at 3:20 PM Flag Quote & Reply

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