What Is MRKH?
MRKH (Mayer Rokitansky Küster Hauser) syndrome is a congenital (born with) abnormality, characterised by the absence of the vagina, cervix and the uterus (womb), which affects one in every 5,000 women. It is also associated with kidney, bone and hearing difficulties. The ovaries are usually present and function in the same way as any other womans by producing eggs and female hormones that keep you healthy. Chromosomes are the normal 46xx female karyotype.
How will I know if I have this condition?
Women usually discover that they have no vagina, cervix or uterus (womb) during puberty. Although they develop breasts and pubic hair, they do not start having periods. This is because the ovaries produce the female hormones that make normal development occur, but the absence of the vagina and uterus mean that there is no period. Most women seek advice about this when they are 15 or 16 years old. However, some women may have found out because they had difficulties with sexual intercourse.
What Tests Will I Have?
Your GP will normally ask you some questions and may examine you. Some GPs feel that this examination is best done at a hospital by a gynaecologist and may have referred you for this. The doctor may refer you for further investigations, which may include:
As women with this condition also have a 40 percent chance of having differences in the development of their kidney and urinary tract eg 15 percent have only one kidney, a renal scan or X-ray of this area may also be recommended. 10% of women with MRKH may experience some hearing difficulties and another 10 percent may have bone changes. If required, your doctor may arrange for some tests.
Will I need to have cervical smear tests?
No. As you do not have a uterus or cervix, you will not need to have any cervical smear tests or HPV1 vaccinations.
Will I be able to have comfortable sex?
Yes. The majority of women with MRKH are able to create a vagina by stretching the small amount of vaginal tissue already present. This is usually done by using specially designed smooth cylinder-shaped objects designed for this purpose - vaginal dilators. Following this, you will be able to have sex. You will be taught dilator therapy and supervised by the Clinical Nurse Specialist throughout your treatment. This is the preferred and first line of treatment for the women seen at this centre. About 95 percent of our patients are successful in creating a normal-sized vagina using this technique alone. If you are struggling to complete the dilator treatment, it may be advisable to discuss this with the specialist team Please note, that when you have fully stretched your vagina to a normal functional length, you would have completed the treatment. You can then stop using your dilators altogether. A small minority of women might be offered surgery if they had vaginal surgery before and their vaginas have closed up due to adhesions (scarring). Our specialist consultant(s) will be able to discuss with you whether this is appropriate. Having sex with a partner is a personal and intimate affair. There is no reason why you should not have an enjoyable sex life. Once your vagina has been lengthened you should be able to enjoy sex normally. However, mens penises are different sizes and a man who has a large penis may cause you some discomfort as he would any woman. For this reason, you may need to stretch your vagina further. We will be happy to advise you on this.
Will I be able to have children?
As you were born without a vagina, cervix and uterus (womb), you will not be able to get pregnant or carry your baby. However, your eggs can be removed and fertilised by your partners sperm and then placed in another womans (surrogate mothers) uterus. This is known as IVF surrogacy and the baby will genetically be yours and your partners. This service is commonly available privately in recognised centres or clinics. However, it is possible to apply for part-funding from your GP so that you can have your fertility and IVF treatment done on the NHS. Therefore, we advise that you and your partner discuss this further with your GP. Your alternative fertility option is adoption and many of our couples have been successful in adopting their children.
Is it normal to feel angry and depressed?
Is it normal to feel angry and depressed? Yes. Most women and their parents find this condition very difficult to accept at first and express feelings of shock, anger, depression, isolation and rejection. Many parents also feel very guilty. There is a clinical psychologist available to all women with a diagnosis of MRKH, who will offer appropriate support, which is a vital aspect of your care.
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