Ovarian Cancer Community
OHVIRA Syndrome
About This Community:

This patient support community is for discussions relating to ovarian cancer, biopsy, chemotherapy, clinical trials, genetics, hysterectomy, immunotherapy, radiation therapy, screening, and staging.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

OHVIRA Syndrome

Exactly one year ago this month, my husband and I were informed that our then 11 year old daughter was born with a transverse vaginal septum or OHVIRA Syndrome.  Last summer she was suffering from severe abdominal pain which resulted in her specialist performing a procedure called a LAM (laparoscopy assisted menstruation) on her to drain the residual blood out of her uterus.  Over the Easter weekend of this year, she was down and out again with this severe abdominal pain, and again resulted in her having to be drained.  She is now 12 soon to be 13 and is still too young to have the reconstruction surgery performed.  My question is:  How do you function or deal with this as a family?  She is devastated that she has this condition.  What can we do, as her parent, to support her and help her through this, more than what we are doing currently?


This discussion is related to "Transverse Vaginal Septum"--Am I the ONLY one?.
2 Comments
Blank
155056_tn?1333642288
I wish I could offer some words of wisdom, but I can't.  I know nothing about this syndrome, and any information that I could offer I would get off the internet, and I am certain you have done your research.    Are you in the United States?  Have you reached out to some of the bigger hospitals like John Hopkins in Baltimore?  You can often send copies of reports, etc via email.
Is your daughter seeing a therapist?  I think that it is important for her to have someone that she can talk to, someone objective and removed from the situation.  Wouldn't hurt mom and day either.
Hugs to you all.
Pam
Blank
Avatar_m_tn
We live in Canada and she is under the care of the Head Pediatric Gynocologist in the province.  I have done my research on the WEB and I agree that talking to some one other than mom or dad, which she isn't comfortable talking to dad about the situation anyways, wouldn't hurt.  Thanks for the support.
Blank
Continue discussion Blank
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Ovarian Cancer Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Ovarian Cancer Answerers
667078_tn?1316004535
Blank
HVAC
Durham, NC
Avatar_f_tn
Blank
old_before_my_time