In the MRKH community, we talk a lot about stages. Not stand up on a stage and perform to an audience type of stages, but stages of acceptance, grief, treatment, development, healing, etc. We also talk a lot about our journey as it relates to these stages.
From a purely physical perspective, MRKH affects us all a little differently. It’s a genetics thing, and while Amy could explain all the science behind it, just know that every attribute about us as a human is controlled by our genetic makeup, and when there are little bumps in the road, different things happen. We didn’t get MRKH because of something our mothers did or consumed, it’s not recognized as a side effect of some medication, and there aren’t any definitive environmental links either; it is simply that at a particular moment in development of the embryo, a specific gene didn’t get the message it was supposed to create a cervix, or uterus, or vaginal canal. Generally speaking, women diagnosed with MRKH have an incomplete reproductive system – the organs just don’t form correctly or are missing entirely. Often, there are also related complications with the renal system (kidneys), skeletal/spine issues, and other things. In my case, I have both ovaries, fallopian tubes, and some uterine tissue – but the news never made it to the correct gene to fuse those tissues together for a functional uterus, create a cervix, and make my vaginal canal of typical length. Apparently, my kidneys got a corrupted message too – my right one decided to just stay and hang out in my pelvis, since I wasn’t going to get a uterus in there. I did however get a bit of a head start on the vaginal canal – a whole centimeter of depth! As it turns out, that was quite handy for me in the “treatment” stage.
Again, because we all have MRKH a little differently, our treatment for the physical anomalies varies as well. It even varies greatly by country and culture. I’m in the USA, so I’ll just speak about options here – but if you are in other parts of the world, sometimes you have very different approaches to treatment. Additionally, because medical biotechnology advances constantly, what treatments are widely used will vary as well from generation to generation. I was diagnosed at 18 years old, and it was 1989. It was a time of many advancements in medicine, with procedures changing as technology advanced. It was also during a time when “test tube babies” and treatments for infertility were getting some news time. But I was 18 and my primary concern was “how do I stretch out the vagina so I can have a more or less normal sexual relationship?”. Well, my doctor said that because I already had a start at some vaginal depth, it would be pretty easy to stretch it out. I could use plastic molds to do this, or I could just attempt sexual intercourse with a gentle and patient partner and stretch naturally. I had a fiancé, I had a trip planned after I graduated high school, and you know, I was planning to lose my virginity…so…I went with the stretch naturally method. It was much less embarrassing to me, and as it turned out – worked just fine to get me “custom fit” for my fiancé. Other women in the USA chose to have a vagina created surgically. There are several procedures offered to created, and generationally and regionally they vary. McIndoe, Vechetti, and Davydov seem to be the most popular surgical options. I really haven’t had or needed any other treatment for MRKH. I get regular medical care and gynecological exams, and since I still enjoy an active sex life, my vaginal depth has been maintained. I did go to a fertility clinic at one point to discuss options of IVF and surrogacy, but again, it was in the early 1990s, and not all the states had the same laws about it, and it was not generally covered by insurance, and with the estimation of costs – the option to pursue it was taken off the table pretty quickly.
So those are the physical stages of diagnosis and treatment for me. I found out I had MRKH, I created a vagina, I couldn’t afford to pursue IVF and surrogacy, so my treatment was basically complete. Clean and simple, right?
But the emotional side of things has a habit of sneaking in every now and then and shaking things up…again! So I’m sure you’ve seen the 5 stages on the road to acceptance before: Denial. Anger. Bargaining. Depression. Acceptance. Maybe you’ve even been able to apply them to areas in your own life. But looking through the lens of MRKH and our lifelong journey, it is not just one loss or trauma we are dealing with, but many that are intertwined. The trauma of diagnosis; the reality of infertility; the shame in being “not normal”; the sheer nature of creating a vagina – through dilation or surgery; the grieving for children you will never have; the effect infertility has on relationships; and I’m sure the list will continue to grow. Many times I feel like I do the 2 steps forward, and 1 step back thing. Different things set me off, and different things have bothered me over the years. I’m well past the denial stage, and most often I sit at the acceptance end of the stages…but then I see a meth head youngster who is pregnant and destroying the child growing inside her – and I get MAD. Or I see a beautiful and healthy young mother who is pregnant with her 7th beautiful healthy child (yeah…this is a true story), and I get a little depressed – happy for her, but yearning for the ease of pregnancy and wondering if she’s ever had a miscarriage and could maybe understand the struggle of an infertile woman. I don’t usually linger in these thoughts for long…but they do come up from time to time and catch me off guard. I try and get firmly back into the acceptance stage – because it’s here where I can be the best me!
When I am in the acceptance stage, I am strong and positive. I’ve learned from my experiences, and I’ve healed…just a little bit more each time. I can spend my energy doing what I can to make a difference. To mentor. To guide. I can talk to a young woman considering treatment options, and give her the best advice I have. I can be happy for the healthy pregnant mom of 7. I can enjoy the adorable pictures of miracle surrogacy babies. I can be strong and encouraging for my MRKH sisters around the world. I can work hard and help to raise awareness and reduce the shame of having been born with MRKH. I can talk about not having a uterus and having to “make my own” vagina to random strangers. And I know that I am strong enough to not let MRKH dictate my life, and to get my butt back to acceptance as quickly as possible. The more actively I work to promote MRKH, the more healing I do not only for myself, but as an example for all my warrior sisters!