Rokitansky’s syndrome: women born without vagina

A rare syndrome affecting the female genitalia.

The Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHSis 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.

Rokitansky's Syndrome: definition

It is a congenital congenital malformation that occurs during gestation, and results in the birth of girls who do not develop, or develop incipiently, the tubes of the uterus, the cervix and the vagina. The ovaries, however, are present and functional.

Apparently, the appearance of the vagina is ordinary, with inner and outer labia, clitoris and hymen, but behind the hymen, there is an "impassable wall" or, at best, a very short duct.

Prevalence of Rokitansky's Syndrome

Currently, it is estimated to be prevalent in 1 in 5000 women with this condition.

As indicated by Andrea Gonzalez-Villablanca, journalist and founder of the blog Rokitansky's NymphsOne in 5,000 women is diagnosed with Mayer-Rokitansky-Küster-Hauser Syndrome. One in 5,000 women suffer from utero-vaginal agenesis. One in 5,000 women do not menstruate, nor can they become pregnant. One out of every 5,000 women is afraid to start a relationship. One out of every 5,000 women seeks answers, support and guidance. One in 5,000 women deserves to be informed. One in 5,000 women is just like you.

Diagnosis

As a general rule, the diagnosis is made at the adolescent stage. adolescent stagebecause patients come to the gynecologist because they do not menstruate (primary amenorrhea).primary amenorrhea is the main characteristic of the syndrome). The consequence of this lack of menstruation will result in the future in the impossibility of having Biological children. impossibility of having biological children.. 

In other cases, it is the great difficulty in maintaining sexual relations that causes the patients to come for consultation. In the most extreme cases, only the outermost part of the vagina is formed, and we find a "wall" behind the hymen, not a cavity, as is normally the case.

Possible anatomical treatments

Once diagnosed, there are two alternative procedures, depending on the severity, to solve the problem.

Dilation

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 is recommended.

Surgical intervention

It is very common to find that there is no cavity at all, simply a wall behind the hymen. In this situation, doctors of recognized prestige, such as Iván Mañero, intervene using a piece of intestine to make the vaginal cavity. After a month of recovery, patients must use dilators, as in the previous case.

What happens at the psychological level?

The diagnosis of this disorder usually provokes a strong emotional stress in the patient, due to the implications for future sexual and reproductive life.

The impossibility of becoming pregnant due to the absence of a uterus is usually the most difficult aspect to accept. Many of these women wished to have biological children and the psychological impact is very strong when they are aware of what is happening. For this reason, psychological psychological treatmentis very important to accompany the patient through the whole process.

A psychotherapeutic consultation is advised to evaluate the patient and the parents and to discuss the ideal and opportune moment for the construction of the vagina or the use of non-surgical treatments. It should be made clear that from the beginning techniques are available that allow the creation of a neovagina suitable for an almost normal sexual life.

Usual psychological symptoms in women with Rockitansky's Syndrome

• Feelings of sadness. Many family members say that since they learned of the disorder they look like "someone else".

• Lack of self-confidence, withdrawn and introverted.

• Difficulty in maintaining sexual and romantic relationships.

• If they have a partner at the time of diagnosis, it is common for them to immediately think of abandoning the relationship or even boycotting it, claiming that they are incomplete women, incapable of making anyone happy.

Psychological treatment

There are associations dedicated to the emotional support of people and family members with this type of disease.. They listen to patients and put them in contact with other people who have the same disease; they are integrated directly or via the Internet to group therapies where they can share their experience of the disease or treatment.

GRAPSIA y Rokitansky's Nymphs are two of the main associations for this purpose. They provide information to young and adult women with this and other diseases and have informative material on the subject.

Finally, it should be noted that in the vast majority of cases, according to Dr. Patricia Montull, patients are emotionally and psychologically revived after the operation.. They feel like living again and in many cases, they do not even require psychological care afterwards.

Interview with a girl with Rokitansky Syndrome

At 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 in:

"Interview to Lía, a woman with Rokitansky Syndrome".