Dear Professor Winston,

I would like some advice on a rare condition that I  have been recently diagnosed with. I am in my mid-20s and have never experienced periods; there is no bleeding but I still get all other symptoms.  I have always been very slim  so the lack of  periods was put down to my being underweight.

After a considerable amount of time with my partner, we have decided to investigate it further. As the ultrasound showed very little, I had an MRI done. After which I was told that i have no womb and I was referred to a gynaecologist who diagnosed me with MRKH Type 2 as I have a small womb, no cervix and only one kidney.

I have been left in the dark and been told that my only option to have a baby would be IVF via a surrogate as I still ovulate every month. Since there are no specialists dealing with MRKH, I know very little about my options and what this condition actually  means.

Any info would be greatly appreciated.

yours faithfully,

N.

 

Dear N.,

Your condition, Rokitansky syndrome is pretty uncommon but there are quite a number of women like yourself with similar problems.  Essentially you have been born without a proper womb, or at least an underdeveloped one, which is why you are not having periods.  But you have ovaries which is why you have the symptoms associated with the menstrual cycle each month, and you ovulate.  The eggs being so small in all humans that they cannot be seen with the naked eye means that after ovulation they just disintegrate inside your tummy.

This defect, which has a variety of differences in each woman generally means that there will be no chance of you conceiving even though you are a full and proper woman with normal functions in every other respect.  Your doctor is correct in saying that you only way you are likely to have your own genetic child would be to collect eggs from your ovary, fertilise them outside the body using IVF and then placing an embryo in a surrogate mother with a normal womb.  Sadly, there is no chance of an artificial womb.  As I am sure you understand this is a complex decision for you to take but it might be worth getting further advice about it.   One of the immediate issues is that people like you frequently have abnormalities of the renal tract so review of your kidney, or kidneys, and the bladder should be undertaken to make sure there is no risk to your general health if nothing more is done. A kidney expert can easily sort this out with scans and x-rays under the NHS, but I must emphasise that usually there is nothing to worry about in this respect.

If you did decide on surrogacy, I fear you may need to go to a private IVF clinic as the NHS is very restricted.  Most IVF clinics do not undertake surrogacy, but a number will and it may be that this is possible to set up where you live.

I have seen a number of women like yourself, so you are not that rare.  Recently you may have heard that some gynaecologists consider a womb transplant to be an option for people like yourself, but it is a very complex operation with many tricky aspects and some danger and I am not sure I would recommend that approach.  So far there have one or two successes in Sweden, but nowhere else.

I am sorry to give you such disappointing news, and I am sorry that the gynaecologist you saw did not explain things better.  But it can always be quite helpful to consider going back to get as much information about your problem from this doctor because he or she will have all the specific information which concerns you particular case and should suggest a referral.  I hope this is helpful.

My best wishes

Robert Winston

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