Copyright Sisters For Love MRKH Foundation.
All rights reserved.
Dear My Sister,
It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes…….
If I could share with you what I've learned my dear sister, I would like to take that opportunity right now. I'm imagining I am talking to my seventeen year old self. I'm now thirty nine years old. Oh darling, the places you will go, the things you will experience, don't fret, life does improve!
When I was seventeen, I knew I was different. But I didn't know how different. I just knew it was a bit strange to not have my period yet. I did visit the doctor at the Family Planning Centre. She tried to encourage me to seek further assistance, but I refused. At twenty years of age, I saw this doctor again, and she successfully got me to see a specialist. Oh god. The horror of that experience, I was not expecting to feel so alone. I didn't realise I should bring a support person. That would have helped. I was examined. Then I was put through a MRI exam, two ultrasounds, and I even asked the doctor if I was a boy. He was so kind and reassured me I wasn't, but to put my mind at ease, he ordered a chromosome test to prove it to me. I then had to have a laparoscopy. Then I had to wait for my results. In the mean time I partied it up (as usual!) and celebrated my twenty first birthday with lots of fun and enthusiasm!
Then came the day of the appointment to get results from the specialist about my laparoscopy. I had to wait in a crowded waiting room in the public hospital with a gazillion other women and their screaming children. For HOURS. Then I saw the specialist. For less than ten minutes. He drew a diagram to explain my insides. Or lack thereof. One of my kidney is skewiff. One ovary is kind of not there. Uterine agenesis. No womb??? I was in shock. He said he'd write to the doctor who referred me to him.
All that information didn't sink in...I made my way to the hospital public telephones. (Sister, this was pre mobile phones, 1996!). I phoned my dear best friend. I was crying, she said come over straight away, she said she would pay for the cab fare. I got to her place. We chatted in her bedroom. She said, "Can you get a womb transplant?" I said, "No, I don't think so". Little did we know that this procedure is being trialled overseas as I write this.
I wasn't referred to counselling. I believe this should have occurred. Thank goodness for my dear best friend. Otherwise I would have completely lost myself. I put my issue on the back burner for a few years. Then I eventually dealt with it. Sort of. Now, I've embraced it. But you see, dilation was not ever a requirement for me, because I was able to be intimate with a partner from the age of sixteen before I realised there was ever an issue.
Yes, I've embraced it. I only found out six years ago that the term MRKH Syndrome exists...and then my world opened up. I searched the term on Facebook and thank god some brave sisters put it out there. Then I connected with my sisters across the globe. Social media is AWESOME.
YES, the places you will go Bianca, the places you have been. You spent many months on and off since you were fifteen in hospitals for the other health condition you have had to deal with. Unrelated. But by far, dealing with MRKH has been the most rewarding, the people you get to meet, both via Facebook and in person. You even got to experience marriage, even though you got divorced (and you didn't divorce because of MRKH).
Life is pretty rich now, even if you are single. WOW! Life has improved. You no longer use the term "Freak" in your head. You don't bully yourself. You embrace yourself and your sisterhood. You are kinder to yourself. Supporting your self esteem is so important. And guess what, seventeen year old Bianca, at 39 you have been to Sydney twice for a support meeting for MRKH Syndrome. Organised by an extraordinary person, your fellow sister, Ally. And Jaqui now runs the meetings with Ally. And you have just booked flights to the third meeting. And you can't wait to see everyone!
I don't want to overlook how difficult it has all been, yes, there are still some terribly sad days. But the good DEFINITELY outweigh the bad days. At 39 your contemporaries are having children, and some are up to their second lot of children. Pregnancies are hard to be around sometimes. But then when you hear a tantrum in a shopping centre by a toddler, you are reminded that you really are not that maternal after all!
Remember, if there's some final things I can leave you with, you are not a freak. You will hopefully embrace having a sisterhood that is across the globe and please, please remember, if you cannot open up to family or get the support you were wanting or expected from family, search for support from your 'bestie', or open up to a fellow Sister on Facebook. That's how I met Ally, we connected through Facebook, and I've met her in person.
Finally, as our U.S. MRKH sisters would say, you are a "Warrior"!!
...... With Love,
Your MRKH Sister
Aged 39 Years