How will I know if I have this condition?
Women usually discover that they have no vagina, cervix or uterus 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. However, some women may have found out because they had difficulties with sexual intercourse.
The cause of MRKH syndrome is unknown, although it probably results from a combination of genetic and environmental factors. Researchers have not identified any genes associated with the syndrome.
What tests will I have?
An examination is best done by a gynaecologist. The doctor may refer you for further investigations, which may include a blood test to check your chromosomes and exclude any other genetic abnormalities and an ultrasound scan or MRI scan to confirm the absence of the vagina, uterus and cervix and the presence of ovaries.
As women with this condition also have a 40 per cent chance of having differences in the development of their kidney and urinary tract (for example 15 per cent have only one kidney), a renal scan or X-ray of this area may also be recommended. Up to 10 per cent of women with MRKH may experience some hearing difficulties and another 10 per cent may have bone changes.
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 children?
As you were born without a vagina, cervix and womb, you will not be able to get pregnant or carry your baby. However, your eggs can be removed and fertilised by your partner’s sperm and then placed in a surrogate mother’s uterus.
Refinements in surgical techniques, such as the Vecchietti and McIndoe procedures, have enabled many women with müllerian duct anomalies to have normal sexual relations.
Is it normal to feel angry and depressed?
Yes. Most women and their parents find this condition difficult to accept at first and express feelings of shock, anger, depression, isolation and rejection. Many parents also feel guilty.