Did you know that for every 4500-5000 female births, 1 baby girl is born with an underdeveloped uterus and vagina? This is a syndrome called Mayer-Rokitansky-Kuster-Hauser syndrome or MRKH and is more common than you may think.
These women have the frightening and difficult experience of accepting their inability to carry their own child, since they don’t have a uterus and may also be feeling uncomfortable forming personal relationships. This may be further exacerbated when there is a very short or even absent vagina and the entire association of ‘womanhood’ may be called into question.
The aim of treatment for this condition is to treat the psychological distress around the problem (often not diagnosed until puberty) and to create a normal sized vagina so that women can have normal sexual relationships. A number of treatment options are available, however it is recommended that women explore non-surgical techniques before opting for surgical methods.
The non-surgical method that is recommended uses graduated dilator therapy, where women gently insert dilators of slowly increasing incremental sizes onto the normal vaginal skin, which creates a vagina by pressure. This method is inexpensive and has success rates of up to 90%, but women often find it hard to adhere to the lengthy treatment (average 5 months) and tolerate the discomfort and constant reminder of their condition.
A non-surgical technique has been performed at the Royal Hospital for Women, Sydney, Australia for more than 10 years now and has shown highly successful outcomes in a short time frame and with less discomfort in the women receiving treatment with the standard approach. This technique involves intensive treatment where a specialist nurse performs dilation sessions of about one hour duration several times a day for a number of days. During this treatment, a variety of additional treatments may be used to help relieve anxiety, decrease pain and discomfort and prevent skin damage or tears. This treatment can be done with the woman admitted in hospital as an inpatient or with her attending as an outpatient. These women are given intensive nursing care and counselling throughout and after the treatment.
The GRACE Research team at UNSW conducted a study evaluating this technique and focused on the outcomes of the treatment such as the length of vagina after treatment and whether women were satisfied with sexual intercourse.
Using a combination of additional treatments to aid intensive dilator therapy proved to be highly successful in creating a new vagina in women with MRKH. The results demonstrated that these additions decreased treatment time by relieving anxiety, pain and discomfort of therapy. These treatments included oestrogen cream applied to the vaginal area pre-treatment, nitrous oxide (an anaesthetic gas – known as ‘happy gas’) to help the women relax during treatment, an anaesthetic gel and Panadol and Naprogesic to help decrease the pain during and after treatment. Relaxing the woman and decreasing her pain and discomfort allows the nurse to progress through dilator sizes more quickly during therapy and consequently, achieve a normal vaginal length in reduced time.
In this study, it was found that the average age of women starting treatment was 18 years, with a range of 13-36. Of the 63 women included in the study, more than 65% of the women achieved a normal length vagina by the end of intensive treatment. By the first follow up (average 46 days from starting treatment), 96% had achieved a normal vaginal length. Most importantly, of the 30 patients who were known to have embarked on sexual relationships, 29 were satisfied with sexual intercourse.
Surgical procedures have the advantage of creating a vagina over a short period of time with an advantage of not requiring input from the woman. However, this non-surgical technique avoids the complications and long-term adverse events associated with surgical procedures, yet it still manages to create a vagina without initial patient motivation in an average of 3 days. Regardless, it is expected that women use dilators after their surgical treatment methods to maintain vaginal size. Previous studies emphasise that it is extremely cost-effective to do vaginal dilator therapy before surgical procedures.
Overall, this study highlights that intensive vaginal dilator treatment, guided by a specialist care nurse and aided by adjuvants in a multi-disciplinary setting, should be considered the first treatment for women with MRKH. You may know someone who has MRKH and if you don’t, you now know more about it. It is important that women who have MRKH feel comfortable and satisfied, and not as though their lives are controlled by their condition. This method of treating MRKH should help them manage it quickly and smoothly so that they can spend more time living life in a safe and effective manner!
Nadarajah S, Quek J, Rose GL, Edmonds DK. Sexual function in women treated with dilators for vaginal agenesis. Journal of pediatric and adolescent gynecology. 2005;18(1):39-42.