I am writing this to make others aware of this condition, and spread the word on this strange syndrome. Let me start from the beginning.
I developed early. I began to grow breasts and pubic hair at the same rate as my fellow students, around the age of 11-13. However, my friends were starting to giggle and go on about getting their first periods, something that continues to elude me. My family doctor insisted I wait until I was 16 before starting to do any testing on me, just in case I was just slower having my period than the rest. But after hitting age 16 and having no monthly “present”, I went back to my family doctor demanding answers.
I was sent for several ultrasounds, blood tests, chromosome tests, and an MRI, to be informed that although I had a perfect set of chromosomes, for some odd reason, I still was not bleeding. I was set up with a gynecologist, and she sat me down in the upstairs of my local hospital to inform me that I was abnormal, and had been diagnosed with MRKH. Those were her exact words, I kid you not. “You are abnormal.” Those words stick with me to this day. It did not help that she was seven months pregnant at the time, informing me that I was never going to carry a child myself! I had a meltdown, and after briefly explaining everything to me and my mother, we were sent home. I cried for days, contacted the two or three people closest to me and told them everything. I was heartbroken.
It took me over a month before I mentioned anything about the syndrome to my then-new boyfriend (now fiancé). He laughed, because, as he said, why am I so worried about kids now? Worry about it when the time comes. I was given a new gynecologist since my first one went on her maternity leave, and birth control pills to help balance my hormones, which continually went out of whack at the same time every month. Typical woman, right?
After several failed rounds of birth control, some that left me exhausted and sleeping for days on end, some that left me crazy and screaming and angry, and some that just made me puke, we finally settled into low-dose supplements meant for women during menopause. Knock on wood, those have worked wonders for me for the last year and a half, and keep my craziness every month pretty much in check!
I must let you know now that I was also born with one kidney (which we’ve known about since I was born), and that I have scoliosis (a twisted spine). I am also extremely prone to bladder infections, which led to several CT scans and a scope to make sure everything was normal there. Everything is normal except for the fact that I am a woman, and my “internal plumbing” is complicated. However, I must say the doctor that was assigned to be my urologist was a Godsend. Before my CT scans and scope, he sat me down in his office and showed me all of my medical files, ultrasound images and MRI included. I was able to see for myself exactly what I looked like on the inside. And, following my CT scan, we learned that I have not one, but two kidneys, miraculously attached together on one side but functioning perfectly. He also explained to me that the tissue in your kidneys and the tissue in your uterus are very closely related. They develop at the same time during gestation, and something went wrong when I was developing just during those few weeks, giving me all the problems that I have.
Over the last three years, I have battled the emotions connected to living with MRKH. Recently, I have seen quite a few of my friends, classmates, and family members have children, and fall into “baby depression”, as my fiancé calls it. I will sometimes lie in bed at nights and cry for the fact of nothing else but the desire for a child of our own. I will cry in frustration over the costs of surrogacy, of the wait for adoption, and just for the fact that it just seems so easy for everyone else to have a family.
Some people are very callous in what they say when they learn that I have MRKH as well. I get the worst comments from the most well-meaning and confused individuals. Here are some:
- Do you still, you know, bleed? (No, I have no uterus, so there is nothing there to bleed from.)
- How do you get a period then? (I just don’t have one. I ovulate and the eggs dissintegrate.)
- Is sex normal for you? (Absolutely, aside from it hurting a lot more the first few times, since I am missing the upper 2/3 of my vagina and I had to stretch out a bit.)
- So how do you expect to have children? (We want to try surrogacy, but it is very expensive and is something we need to look into further in the future.)
- Does it upset you that you will never feel a baby growing and moving inside your own body? (Every day of my life since I received the news of my syndrome.)
- Is it hereditary? (Partially, I believe, although no research has been proven either way.)
And the worst statements of all,
- You are just not right / abnormal / strange / different / weird.
- You have to be joking, there is no such thing!
MRKH is very real and is something that I am slowly coming to terms with. I will always have my baby depression, I am aware of that. I am going through it now, in fact. Sometimes I rub my belly and wonder what it would be like to feel a child kicking and growing underneath of my skin. There are times where I get frustrated and sick and tired of taking my pills just to make me “normal”. I hate myself, but I love myself. My fiancé has sat by my side through appointments, scans, tests, tears and heartache, and has never wavered in his faith in me to be strong. I now wear a MedicAlert necklace stating my syndrome and kidney condition. I see my gynecologist once or twice a year to make sure everything is still ok, and she is wonderful support as she is a specialist and has seen plenty of cases like mine in her time of work. I am starting to connect with different MRKH blogs and web pages online, reading information from women like me who have tried and succeeded in having children of their own, and living their lives to the fullest. My name is Briana, and I am 1 in 5000!