Genital Surgery

All girls with CAH are born with a vagina, but sometimes it is difficult to establish the position or size as these can vary considerably. The vagina may be covered with a small membrane and the clitoris is nearly always enlarged. Some girls with mild forms of CAH, do not need any surgery.

The timing of any surgery is dependent on the degree of virilisation and the feelings of the parents after discussion with their specialist as to the options available. In order to feel confident of decisions about surgery a second opinion may well be helpful. Surgery to reduce the size of the clitoris, a clitoroplasty, and to make a larger vagina, a vaginoplasty, can be done at any age and opinions vary as to the best timing.

Surgery on the clitoris is relatively straightforward. The aim of a clitoral reduction is to reduce the erectile tissue and preserve the nerves and blood vessels to the glans, the tip of the clitoris, so that it remains sensitive.

Surgery required for the vagina and urethra in more complicated and varies considerably. If the vagina is positioned high near the bladder there can be the possibility of damage to the neck of the bladder, which controls the release of urine. Great care must be taken as any damage to the bladder could cause incontinence. Pelvic floor exercises can be of great help with any minor weakness with the bladder control, and will also help to strengthen the vaginal walls.

An examination just before the start of menstruation is often carried out to establish that the vagina is able to allow the use of tampons and also to make sure that the vagina will be big enough for comfortable sexual intercourse. Some specialists prefer to do this examination under a general anaesthetic, which though not strictly necessary, can make it less embarrassing for the young adult.

Some women may require surgery later in life for an enlarged clitoris or because of a small vaginal opening. It is rare for the clitoris to enlarge in adult life unless the control of CAH is very poor for a long period of time so that high testosterone levels cause the growth of the clitoris. Despite earlier surgery, the clitoris may remain relatively large in some women.

In adulthood, vaginal surgery may be required to ensure comfortable sexual intercourse and to reinforce confidence in feeling feminine. Even if surgery on the vagina has taken place in childhood, it is not unusual for the opening of the vagina to be small. There are many surgical procedures using different methods to enlarge and line the vagina. ‘McIndoe’ techniques use skin grafts from the buttock or thigh to form a ‘tube’ like new vagina. Alternatively, a part of the colon can be transplanted to the vaginal space. Women needing vaginal enlargement should have information on the various techniques available and be allowed to discuss all the possibilities. For example, the two surgical techniques described above leave scars and increasingly experts feel that the less invasive use of dilators is best for women even for those who have a very short vagina. There are some surgeons who feel that vaginal surgery for an adult should only be considered if there is already an established relationship. The alternative view, often held by women themselves, is that early surgery is necessary for sufficient confidence and self esteem to establish a sexual relationship.

Surgery now has much improved over the past 30 years and the involvement of patients in decisions affecting their care has increased. Adults, who had surgery many years ago, may experience more difficulties from the effects of surgery, than those who have had more up to date operations. For instance, the practice of complete clitoral removal, clitorectomy, was once quite common. Alternatively, some erectile tissue of the clitoris might have been left secured under the skin in front of the vagina, this can be extremely painful during intercourse. Also, the glands that secrete the vaginal lubrication prior to and during intercourse might have been damaged making is necessary for a lubricant, such as KY jelly to be used for comfortable intercourse. Some women notice a build up of scar tissue after more than one operation on the vagina. This can cause lack of sensitivity within the vagina or pain during intercourse as the scar tissue is not pliable and does not stretch easily. Oestrogen cream applied to the vagina or the use of dilators can overcome some of these problems

In most women, a small vaginal opening or shortened vagina can be improved with dilators of various sizes that will allow successful sexual intercourse. By applying gentle but firm pressure to the vaginal opening by inserting a plastic dilator and, over a period of time, gradually introducing a larger size of the dilator, the size of the vagina will increase. Within months a significant increase in size can be achieved. For those women who are not sexually active, the vagina will tend to contract if dilators are not used regularly. It may be necessary to keep up a regular, alternate day use of dilators for ten minutes or so. Some women feel less happy with the dilators and prefer to use their fingers. However, this method takes time, perseverance, motivation, and the ability to feel comfortable in touching the genital areas. Also, some women with CAH may have relatively small fingers; if there is a partner, their help may be of benefit until intercourse is comfortable. The use of a dildo may also be acceptable. Intercourse itself can gradually increase the size of the vagina but it takes an unusual degree of self-confidence to feel comfortable with this technique.

Some women find that everything to do with the mechanics of sex is very embarrassing. Teenagers, in particular, may find it difficult to find support and understanding if their parents find this uncomfortable territory. Extreme sensitivity is needed so that they can discuss how they can improve what they may see as an inadequacy of their body. An experienced sex therapist might be useful here. It must be remembered that women without CAH have genitalia in all shapes and sizes. The penis is a very adaptable organ, which also varies greatly in size.

Orgasm

It may be that the surgical and psychological issues of sex make it difficult for women with CAH to achieve an orgasm. The complete removal of the clitoris, pain on intercourse, poor vaginal lubrication or lack of self-confidence may all contribute to a failure to achieve orgasm. A gynaecologist with specialist experience or sex therapist should be able to help overcome these problems.

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