Being born without a vagina is very distressing, and it is almost always associated with an absence of the uterus. The ovaries are normally present and function as anybody else's ovaries would do, producing eggs and female hormones which keep you healthy. You are of course entirely female. This is known as the Mayer Rokitansky Kuster Hauser Syndrome often shortened to Rokitansky Syndrome.

How will I know if I have this problem?

You discover that you have no vagina when you fail to start having periods at the age that you would expect. You develop breasts and pubic hair like any other woman, but you will not have a period. This is because your ovaries produce the normal female hormones which make normal development occur, but the absence of the uterus and vagina means there is no period. Most girls report this at the ages of 15 or 16 years. Alternatively, some may have difficulties with sexual intercourse as their first problem.

What investigations or tests will I have?

Your GP will normally ask some questions and then examine you. Sometimes GPs feel that this examination is best performed at a hospital by a gynaecologist and may well refer you for this. When the examination is carried out, the doctor will discover that you have been born without a vagina. Further investigations like a blood test to check your chromosomes and often an ultrasound scan to take a picture of the organs in your pelvis will be carried out. The blood test to check your chromosomes is to exclude other genetic abnormalities. The ultrasound scan will detect the absence of the womb but the presence of the ovaries. As some girls with this condition also have kidney problems, a scan or x-ray of your kidneys may be recommended.

Will I be able to have sex?

Yes. After help from a specialist to develop your vagina, you will be able to have sex. The majority of girls are able to create a vagina by stretching the short vagina that they already have. This is usually achieved with the aid of plastic tubes, known as vaginal dilators. If this is appropriate for you, we will teach you how to use these. 85% of girls are successful using this technique alone. The remainder who do not succeed may require an operation to create a vagina (known as a vaginoplasty).

Will I have a normal sex life afterwards?

Having sex with a partner is a personal and intimate affair. There is no reason why your sex life should be any different to anybody else, within which ever loving relationship you find yourself. Once your vagina has been created there is no reason why you cannot enjoy sex normally. However, all men have variable sized penises, and some men who are bigger may cause you some discomfort as they would any woman. Occasionally you may need to stretch your vagina further if your partner is too big, but this is easily achieved with our help.

What happens if I need to have a vaginoplasty?

Those girls who need surgery will find the procedure rather prolonged and arduous. The operation takes about an hour and a mould, the shape of your new vagina, is sewn into the vaginal space. You will also have a catheter, which is a tube into your bladder, to drain your urine after the operation. The mould and catheter are removed after two weeks and you must spend this time in hospital. After the mould is removed you will need to use the dilators, as described previously, to ensure that your vagina remains normal and does not shorten. It is necessary to use the dilators or have regular sex after surgery to ensure that the result is satisfactory and remains so.

Will I be able to have children?

Girls born without a vagina and uterus cannot get pregnant. However, your eggs can be removed and fertilised by your husband's sperm. This can then be replaced into another woman's uterus. This is known as IVF surrogacy. The child is born genetically yours and your partner. The alternative to this is adoption, and many couples have been successful in adopting babies.

Is it normal to feel angry and depressed?

Yes. Most girls and their parents find this condition very difficult to accept initially. Most girls express feelings of shock, anger, depression, isolation and rejection and many parents feel very guilty. Counselling is very important at this stage to help you and your parents understand and cope with these mixed and difficult feelings. At this Centre we have a support group which offers support and encouragement for you, your parents and partners. The self help group has a Helpline telephone number 0208 383 5363. Alternatively, you may contact the Clinical Nurse Specialist on her pager 018932 87517. Please feel free to contact the Helpline whenever you feel you need help. We hope you have found this web page useful, but if there are any questions that are unanswered, and there invariably will be please feel free to ask any member of the team for advice.