Monique Rainford

Although an uncommon condition, some women are born without a vagina (vaginal agenesis). I have encountered a few women with this problem in my career and I admired one of these women for her maturity and strength in dealing with such a sensitive issue.

Vaginal agenesis is usually caused by a condition known as Mayer-Rokitansky-Kuster-Hauser syndrome (MRKH). These women have normal female chromosomes but because of abnormalities in their embryological development, they do not have a uterus (womb) and three quarters of such women do not have a vagina. The other quarter may have a short vaginal pouch. However, these women have normal ovaries and usually fallopian tubes. Because of the specific problem which occurs in development, a large number of these women may also have problems with their urinary tract system and a smaller percentage may have problems with the formation of their skeleton.

Often a female and/or her parents do not realise the problem exists until she reaches puberty and physically she goes through puberty normally (with breast changes and growth of pubic hair) but she does not have her monthly period.

Are you male or female?

An even less common cause of vaginal agenesis is complete androgen insensitivity syndrome (CAIS). These are individuals who have the appearance of women and should be raised as females but they have the male genetic (46XY) gender. It is an inherited disorder in which the person has normal levels of the male hormone, testosterone, but because of the defective gene, the male external organs do not develop. These girls grow normally into puberty, have normal breast development since the excess male hormones are converted to oestrogen, but they have very little hair or no hair in the pubic area or the underarms.

These women have male internal organs which have to be removed because of the risk of cancer but, after removal, they need treatment with female hormones since their body would no longer be producing these hormones in sufficient quantities.

Women with either MRKH or CAIS can be assisted to have well-functioning vaginas and can enjoy normal female sexual activity. A vagina can be created without surgery in the majority of patients using dilators in the appropriate location for half hour to two hours per day for several months. If these methods fail or if a woman desires surgery, there are a number of procedures to create a vagina.

Vaginal mould

I have been fortunate to participate in one such procedure, which, I admit, was fascinating although I felt that the recovery period (during which the woman had to be in bed with a vaginal mould) was quite demanding. After a woman has recovered from surgery, it is important that she has a regular sex life or uses a vaginal dilator to ensure continued functioning of her new vagina.

Although women with either of these conditions cannot bear children, motherhood is still a viable option for them. Since women with MRKH have normal ovaries, fertility techniques such as in vitro fertilisation with surrogate mothers (to carry the developing baby) can be used. Adoption is also an excellent option.

If you have this condition or you are the parent of a child with this condition, I encourage you to fully educate yourself and get good counselling to discuss your concerns. A wealth of information is available on the internet. I certainly hope that individuals, who are aware of women with MRKS or CAIS, would not persecute them for something which is not only a burden to bear, but one over which they have no control.

Dr Monique Rainford is a consulting obstetrician and gynaecologist; email: yourhealth@gleanerjm.com.