He Mayer-Rokitansky-Küster-Hauser syndrome (MRKHSthe acronym in English) is, probably, the most unknown and complex genital disease that a woman can suffer from.
In today’s article we will try to identify the signs and symptoms of this disorder, as well as its causes and possible treatments to improve the sexual and psychological health of women who suffer from it.
It is a congenital malformation which occurs during pregnancy, and results in the birth of girls who do not develop, or only incipiently develop, the tubes of the uterus, neck and vagina. The ovaries, however, are present and functional.
Apparently, the appearance of the vagina is ordinary, with inner and outer lips, clitoris and hymen, but behind the hymen, there is an “insurmountable wall” or, at best, a very short passage.
Prevalence of Rokitansky Syndrome
Currently, it is estimated a prevalence of 1 in 5000 women with this affectation.
As indicated by Andrea González-Villablanca, journalist and founder of the blog Rokitansky nymphs: “One in every 5,000 women is diagnosed with Mayer-Rokitansky-Küster-Hauser Syndrome. One in every 5,000 women suffers from utero-vaginal agenesis. One in every 5,000 women does not menstruate, nor can she become pregnant. One in every 5,000 women fears to start a relationship. One in every 5,000 women seeks answers, support and guidance. One in every five thousand women deserves to be informed. One in every 5,000 women is like you.”
As a general rule, the diagnosis is made in the adolescent stage because patients go to the gynecologist because their menstruation does not appear (primary amenorrhea is the main characteristic of the syndrome). The consequence of this lack of menstruation will translate in the future into inability to have biological children
In other cases, it is the great difficulty in having sexual relations that causes patients to come for consultation. Let’s think that in the most extreme cases, only the outermost part of the vagina was formed, finding a “wall” behind the hymen, not a cavity, as normally happens.
Possible anatomical treatments
Once diagnosed, there are two alternative procedures, depending on the severity, to solve the problem.
Dilatation
In the case of women who do have a small cavity, vaginal dilators are usually used, which will increase in size over a period of time until a depth of 9 – 11 centimeters is reached. Approximately 20 minutes a day are recommended.
Surgical intervention
It is very common to find that there is no type of cavity, simply a wall behind the hymen. In this situation, renowned doctors, such as Iván Mañero, intervene using a piece of intestine to make the vaginal cavity. After a month of recovery, patients must use the dilators, as in the previous case.
What happens on a psychological level?
The diagnosis of this disorder usually causes a strong emotional stress in the patient, due to the implications on future sexual and reproductive life.
The inability to get pregnant due to the absence of a uterus is, normally, the most difficult aspect to accept. Many of these women wanted to have biological children and the psychological impact is very strong when they are aware of what is happening. Therefore, it is very important psychological treatment to accompany the patient throughout the process.
A psychotherapeutic consultation is advised to evaluate the patient and parents and discuss the ideal and appropriate time for vaginal construction or the use of non-surgical treatments. It must be made clear that from the beginning, techniques are available that allow the creation of a neovagina suitable for an almost normal sexual life.
Common psychological symptoms in women Rockitansky syndrome
Psychological treatment
There are associations dedicated to the emotional support of people and family members with this type of condition In them, they listen to patients and put them in contact with other people who have the same illness; They are integrated directly or via the Internet into group therapies where they can share their experience of the disease or treatment.
GRAPSIA and Rokitansky nymphs They are two of the main associations for this purpose. It provides information to young people and adults with this and other diseases and has informative material on the subject.
Finally, it should be noted that in the vast majority of cases, according to Dr. Patricia Montull, patients revive emotionally and psychologically after the operation They have the will to live again and in many cases, they do not even require subsequent psychological care.
Interview with a girl with Rokitansky Syndrome
In Psychology and Mind and thanks to our collaborator Sheila Robles, we have been able to interview a person affected with this syndrome. We invite you to meet her at:
“Interview with Lía, a woman with Rokitansky Syndrome”
