It wasn’t until a hospital support group meeting about 4 years ago that I even knew there was more than one ‘type’ of MRKH let alone which I had. Whilst I knew there were other effects associated with MRKH I didn’t realise that like with other conditions there was more than one manifestation of it.
Even though I had been going to the hospital for some 12 years by this point this was never mentioned until a seemingly flippant comment by one of the specialists during a discussion. At the time I thought perhaps I had missed something, switched off during an appointment whilst looking at the ceiling and waiting for it to be over, yet it seemed like I wasn’t the only one and others hadn’t realised this either. Someone asked ‘how do you know what type you have?’ to which the response was that it was normally confirmed during the MRI at diagnosis (I was diagnosed by laparoscopy) or as a separate kidney scan (never had one of those).
The outcome of the syndrome is the same whichever type you have it is still not possible to carry your own child, that doesn’t change. This is because in both types there is no full development of the uterus, some have nothing like me whilst some may have uterine remnants, they serve no specific function they are just partially developed and sometimes have to be removed.
Whilst everything looks normal externally the underdevelopment of the uterus leads to the underdevelopment of the internal vaginal tract itself. This can be stretched through dilation (natural or with dilators) or a full length vagina can be fabricated through surgery to allow for a comfortable sex life. Ovaries are usually present in both cases and provide the hormones that ensure our usual female development and is therefore often why MRKH is only detected in the teenage years when periods don’t start as otherwise everything else develops and appears as expected.
The difference between the two types is the additional physiological effects or manifestations caused by the additional genetic changes the syndrome causes. Most commonly this is related to kidney development issues but can also manifest itself in a small number of cases as hearing difficulties and skeletal problems such as scoliosis. A type 2 sufferer may have some or in rare cases all of these problems.
Type 1 is the more common type. Type 1s do not experience any specific additional issues such as those related to kidneys, hearing or skeletal. Not that that is often any consolation for anyone that has this type of MRKH of course.
Type 2 is far rarer and includes the additional effects such as kidney, hearing and skeletal problems. ~40% of women with MRKH have a chance of kidney problems with ~15% only having one kidney, ~10% have hearing difficulties and ~10% with skeletal problems. By its nature, type 2 is often (not always) diagnosed earlier in life because through examination of these issues, especially those related to kidneys, which is the most common indicator for type 2 MRKH, it means that the absence of a uterus is often identified at the same time. This can of course mean that diagnosis can happen even earlier in life where it could be even harder to comprehend the future implications of not being able to have a child.
The typing of MRKH is often now achieved at formal diagnosis which is now typically by an MRI scan. The benefit of the MRI over the more traditional laparoscopy approach is that within one scan an MRI can identify not just bones and joints but also internal organs making it useful to confirm (or deny) the presence of ovaries, kidneys and womb etc more easily.
Back when I was diagnosed I had a laparoscopy which meant a day in hospital and a general anesthetic. To get the best view with the camera sent down through your belly button and the other sent upwards from just above your pubic bone they pumped your tummy full of gas which makes you look pregnant. Oh the irony. I’d had ultrasounds as part of the process to try and work out why I hadn’t started my periods but they never focused on my kidneys and whilst I had never had any major issues with them you never know what’s going on so I got these checked a few years ago to confirm my Type 1 MRKH diagnosis.
Aside from the physiological effects related to type 2 for me the biggest impact of MRKH is psychological. That is not to belittle the condition at all the differences of the two types but the impact it has on your mental well being is really not to be underestimated particularly for a condition which for the most part doesn’t make you physically look any different.
Whatever your type the way you deal with it will differ from person to person. There is no way to predict how you will feel or what the best way will be for you to start to come to terms with it. Coming to terms with it may seem like it’s an easy thing to do, but it’s not. It’s taken me many years to get to where I am now. I’m never going to get ‘over it’ as such but you find a way to put it into some perspective and get on with your life. To be blunt you kind of have to find that way, however long that takes. It’s one of those things that you can’t change but you unfortunately have to learn to live with in some way and if I can help by channeling my experiences to help raise awareness then even better.
Support is therefore vital, getting that at the right time and through the right channels can make so much difference. How people prefer to access that support will also differ but the main thing is knowing that you aren’t alone and that there is always someone there to talk to if you need it. We all need that sometimes, however strong we are.