Tuesday, December 28, 2010

Discovery & Diagnoses

After countless Emergency Room visits for over 2 years for "gas cramps", my abnormality was finally discovered.  It was spring break my freshman year of highscool, and during an extremely painful, yet routine for me, ER visit. This time the pain was so bad I was hyperventilating, vomiting, and was running a fever.

A kind ER Doctor asked my mother and I if she could do a gynecological pelvic exam since I was 14 and had not started menstruating yet. She took a catheter tube and inserted it in the hole she thought was my vagina, and after crying from the pain...urine came out....she was definitely NOT in my vagina. And after looking closer, she discovered that I do not have a vaginal opening at all, not even an indentation. Just skin between my urethra and my rectum. 

She said she has seen girls before with an imporforated/sealed hymen, that needed to be "surgically cut" to open up the vaginal opening, but that they usually had a bulge of some sort as an indication and I did not.  The pain I was feeling was my menstrual cycles building up each month, with no escape. I was full of infection, and had severe endometriosis.

She said we should visit our primary care doctor as soon as possible for further testing. So we did, and she did a pelvic exam to the same discovery. I had an MRI, and was sent to an Endocrinologist for even more testing and onto several doctors and tests. Eventually I was referred to a the Dean of Gynecology at Georgetown University Hospital, Dr. Sanz.

Dr. Saz was a harsh, thick accented man, that bluntly told me I had no vagina, and needed surgery immediately. He prescribed Depo-Lupron, which is a hormonal medicine that basically put me through menopause for 3 months.The idea was to stop my menstrual cycles from continuing inside of me with no escape but my cycles seemed to continue anyway.  I was unable to return to school because of the consistent pain, and horrible side effects from the medicine.

I told some of my closest friends and family members. My mother told my guidance counselor who informed my teachers and I was pardoned from the remainder of the school year with no consequences.

We scheduled surgery for July 5, 2000.


  1. Thank you for sharing! I have a question, Were they right? Did you have a uterus? I ask because your other post says you had a hysterectomy, so I'm guessing you did. Many MRKH women are not born with a womb at all, but each MRKH scenario can be different I know. So, were the doctors correct? You were bleeding into your abdomen?

  2. Estelle- Thank you for your comment :-) Yes I have found that each MRKH girl has a unique story and medical history.
    Up until November 2009, no doctors were completely sure exactly what "parts" I had and in what condition they were in. I will be posting that part of my journey in the next few weeks. But yes I had a bicornuate uterus (aka heart shaped) and my cervix was underdeveloped and sealed shut in addition to having no vaginal opening. So I was bleeding into my uterus and abdomen.

  3. Thank you for informing me. I'm so glad the doctors finally figured it out and that you look like you are doing well. Happy New Year! I almost wore pink and black, just like you, but then I walked outside (it was freezing) and put on another outfit. :) Hope you have an excellent time in the rustic woods.

  4. Hi, My name is Dayna and I found your blog through an MRKH website...and it is like I am reading my life story, the one I kept hidden for so long. I, too, was ill for around two years and the doctors did not know what was wrong - finally, they discovered by menstrual cycle had been building up for the past couple years - thus began my journey! I was twelve then, and I am twenty - two now, it has been with me forever. Thank you for creating this blog and sharing so openly, it is great to see someone with a similar story!