MRKH in our own words

Here is a video I participated in with 2 fellow MRKH Sisters. Thanks to Kristen for putting it together!

MRKH In Our Own Words: Interviews with MRKH Women

Never thought I would have to do that!

I had a strange experience the other day….I bought “panty liners” for the first time. You might ask “why?”  since I don’t have a uterus and therefore do not menstruate…so no need for them, right? Well they were for my dog…let me explain.

New gynecologist this morning...

Since I was diagnosed with MRKH in 2000 when I was 14, I have only ever been to Specialists & Surgeons, never have I been to a “regular gynecologist.” I had a hysterectomy in November 2009, and now decided I should probably visit a “regular gynecologist” regularly, and also for when my husband and I start our surrogacy journey (hopefully next year?).

So I had an appointment with a new gynecologist this morning that was recommended by 2 co-workers. I spent 30 minutes filling out all the paperwork and when the nurse took me back, she asked me the basic question:

“When was your last menstrual cycle?”

I responded “Never.”

Which prompted “Really? Never? Wow…Why?”

I said “I have a condition called MRKH, and I had a hysterectomy in 2009.” That seemed to shut her up ;-)

Dilation

Shortly after my failed surgery in 2000, my surgeon encouraged me to begin vaginal dilation therapy since he said I should never try to have surgery again. I was 14, yet to have a boyfriend, sex nowhere on the radar, and was terrified after trying to dilate for the first time. It was painful, uncomfortable and truthfully…embarrassing.  So I hid the dilators in the closet and went on with my life.

(WARNING- this post is particularly descriptive and adult in content)

Path to Finding My beloved

I was 17, Lee was 19. It was December 2002.
It was Love at first chat.
Soul mates at first glance.

Surgery 2000

After drinking the horrendous "Fleets Phospho-Soda" bowel prep liquid, which I can only assume is similar to stomach bile mixed with lighter fluid, and not eating for over 24 hours, I dressed in my favorite pajamas, blue clouds and rainbows, my mom had braided my hair and we drove the 45 minutes to Georgetown Hospital. The last thing I remember about that day was getting out of the car in the parking lot and walking toward the hospital.

We were told during my pre-op visit with the surgeon a few days prior that the "exploratory laparoscopic pelvic surgery" would be out-patient, and I would wake up with a piece of tape over my belly button and we could go to McDonald's on the way home....Boy we were wrong.

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.