Lesbian couple talk about MRKH and their difficulties of starting a family

Lesbian couple talk about MRKH and their difficulties of starting a family

So, having neither of us ever written a blog, we are writing one about the difficulties we, as a lesbian couple, are having trying to find a sperm donor in a rural, stuck in the dark ages, area, in the middle of nowhere.

Things aren’t quite as straight forward for us two; I suffer from one of the rarer forms of Mayer-Rokitansky-Kuster-Hauser syndrome or MRKH for short. Most sufferers of the condition have all the female workings minus a uterus, or minus the vagina. My version was a bit more complicated.

From being young, I was small for my age, had routine checks for my height and weight. Then at 16, when I hadn’t started my periods, it was always put down to my height and weight, but the Doctors sent me for a scan, then to hospital for further testing after constant nagging. I had a camera put in just under my belly button and another one just on my pubic area. It was found that not only was I missing my uterus and fallopian tubes but I also had no vagina.

As you can imagine, to be told this at any age would be upsetting enough, but to find out that at 16, you were only one in 5,000,000 to have the rarest form of MRKH would be one hell of a blow, especially when all I have ever wanted was to be a mum! From early 1998, aged just 17, I made 3 trips to the Queen Charlotte Hospital in London, the first trip down was to meet the consultant to find out what happened next.

The second trip was to create a vaginal opening; this involved the use of dilators being inserted as far as possible and holding in place, increasing the length of time each time I had to do it. The only way to describe it would be to try squeezing a 6 inch vibrator into a hole the size of a pea!!! As you can imagine a very uncomfortable and painful experience. I was, however, lucky in the fact that I didn’t need to undergo the surgical route of creating a vagina as my skin had enough elasticity in it. To add to the emotional trauma of all this going on, I was trying to cope with my parents separating around Christmas/New Year 1997 into 1998….. Definitely one to remember…. For all the wrong reasons!

So, MRKH…. Some facts for those who are interested

MRKH is a congenital disorder that affects the female reproductive tract. Congenital means that it is there at birth. About 1 in every 5,000-10,000 female babies has this condition. MRKH is a syndrome (group of symptoms). We do not know the cause of this syndrome but we do know that when a baby grows in the mother’s uterus (womb), systems develop. One of the systems is called the reproductive system, which includes the uterus, vagina, fallopian tubes, and ovaries. The reproductive system is formed during the first few months of “foetal” life (while a baby is still in her mother’s womb).

With MRKH, the reproductive system starts to develop but doesn’t completely finish. Girls with MRKH have normal ovaries and fallopian tubes. Most often the uterus is absent or tiny. The vagina is typically shorter and narrower than usual or it may be absent. Sometimes, there may be one kidney instead of two. About 3% of girls will have a minor hearing loss and some may have spinal problems such as scoliosis (curvature of the spine).

When is a girl likely to find out she has MRKH? The most common age for MRKH to be diagnosed is when a young woman is between 15 and 18 years old. That’s when a young woman is likely to see her health care provider because she hasn’t started her period. Some girls may find out at an earlier age or when they are older.
You can create a vagina without surgery using dilators
You can have a surgical procedure
You can do nothing

Creating a vagina with dilators Most of the time girls with MRKH choose to make a vagina by using vaginal dilators. This treatment is very effective and “non-invasive” (does not have the risks of an operation). There are different kinds of dilators available and they come in different sizes. The most commonly used dilators look like a thick plastic tube similar to a slender tampon. Starting with the smallest dilator you will learn how to hold the dilator and apply pressure to stretch your vagina. In the beginning, most of the dilator will be on the “outside” and used as a “handle” (as it can only go in so far). You will use the dilator for about 15-20 minutes, twice a day. Over time, you will begin to notice that the dilator is able to go into your vagina a bit further. This means you have made progress! As your vagina stretches, your doctor will know when to give you the next size. The next size will be slightly wider.

The average amount of time it takes to create a vagina (if the dilator is used at least 15-20 minutes, twice a day) is about 3-14 months. It can take less time for some young women or more time for others. If the dilators are not used every day, it can take a year or more.

So, that’s the scientific bit out of the way.

Where does this leave me now? Well, I am 32 years old, in a civil partnership with my beautiful, understanding wife and, we want to start a family. Naturally, due to my condition, I will be unable to carry a baby, but we are looking for a donor for my wife to (fingers crossed) become pregnant through.

Trying to find a donor around where we live isn’t exactly easy. The nearest cities (where the majority of donors appear to be) are over 100 miles away. We can travel (the wife drives!) so that isn’t an issue, it’s a case of finding a donor who is willing to donate via AI (Artificial Insemination), someone who is willing to take the time for us to get to know them. We aren’t looking for an “uncle” or co-parent, something that a lot of donors are looking for.

Hopefully by the time we write the next blog, we will have been successful in finding a donor and have something positive to talk about!

Article: 20th February 2013 by Amy and Sarah

Posted: 20/02/2013 17:21:19


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