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Date Joined Apr 2009
Total Posts : 401
   Posted 12/6/2010 8:25 AM (GMT -6)   
how do you know the Gyn system of your daughter is affected as well? I also experience symtoms in this regard which had let me think about the possibility of the syndrome affecting the GYN smooth muslces as you know if your daughter suffers from a neuropathic or myopathic variant of CIP?
And what do you do against the bladder problem? Does your daughter catheterize herself?? Is she painfree in this regard? Which problems did she have with the urogenital system before?

Regular Member

Date Joined May 2008
Total Posts : 60
   Posted 12/7/2010 2:04 PM (GMT -6)   
Hi Sarah,

At first we only thought it was her colon, that was for about the first 6 yrs of her life...she was a premmie born at 26 weeks and from the start she had problems not going bowel movements, so at days old is when we started the whole process of operations/medications etc,and like you we also had wrong diagnoses, until we found her drs in Boston @ 6 yrs old... Then we finally had the right tests and the right diagnoses, but it has still been alot of trial and error. We found out about her bladder issues along with her GI issues because her drs told me most kids with motility problems have urinary problems also and we did testing at the same time. Her bladder does not have any motility either ,can't tell when it is full or empty. She should self cath, but her uretha is not formed well and barely has an opening and we can't get a catheter in, and that is how we found out about her GYN problem, she was getting her follow up just after her illeo and they were doing an ultra sound and found that her uterus was smaller than normal and had a mass in it. They sent me to a peditric GYN dr and he did a special MRI and we found out that she has "Agenisis of the Vagina". The mass in her uterus was due to her getting her cycle and having no place for it to go, which was and is causing pain etc... They have to create female parts for her, but because of the nature of the operation and the after care they like to wait till she is at least 15 or older. She is now on hormones to baiscally shut her female system down until we do the operation, and at that time we will also do urinary operation to either try to open her uretha up or go to a urostomy ...right now we just go a little at a time once a day or so, we are still having problems with weight and nutrients so she also has a port a cath and gets IV meds and cycles of TBN/lipids. Her drs tell me that in the womb that all 3 of these systems come from the same cells and grow at the same time, so the more they do research the more they are finding that girls espically have problems with all 3 systems... I tried to condense this ,but feel free to ask me anything else. My e-mail is

Regular Member

Date Joined Apr 2009
Total Posts : 401
   Posted 12/8/2010 11:19 AM (GMT -6)   

I also should have had bladder surgery but the surgery was denied by the chief doc and I can't find an urologist who is willing/able to operate since it is not cancer. That's it, it does not matter that I am on constant antibiotics since otherwise I would live in even more pain, Despite the antibiotics, I continue to have problems with infections, and particularly with the urethra. Like you daughter, I have a very narrow urethra, and I can't self-cath,, since it hurts very much when trying to insert a catheter. My urethra is completely spastic, whereas the bladder does not have any motility at all, there is no pressure at all.

I would go the route with the urostomy bag but there is nobody who wants to do it. I found a very kind urologist, but he was not allowed to do surgery by his chief. His chief said I had munchhausen's sydnrome.
Were you offered an urostomy when your daughter is 15?

I also have problems with my GYN system; it feels as if there was not enough pressure which have to be built up from the uterus to be able to expel the blood. When I do have my periods, it seems that this blood must have been accumulated inside for a long time before applying enough pressure.
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