Vaginal agenesis is characterized by a short, partial or absent vaginal opening. The uterus may be missing or undersized as well. It is a birth defect that afflicts approximately 1 in 5,000 females. The abnormality can make sexual intercourse and reproduction unachievable.
Those with the defect may also have kidney, limb, spine, or rib abnormalities. It is unclear as to why vaginal agenesis occurs, but researchers theorize that it is caused by the lack of mullerian (paramesonephric) ducts in the reproductive system.
The main symptom of vaginal agenesis is a lacking menstrual period, otherwise known as amenorrhea. Although puberty has occurred, menstruation does not take place. When the vagina is nonexistent in a female with a uterus, menstrual blood backs up.
The reversed menstrual flow results in extremely painful monthly cramps. Those without a uterus will not experience pain. Females with vaginal agenesis usually find out during their first pelvic exam. However, sometimes the condition is discovered in infancy or preadolescence during other medical testing.
Vaginal agenesis occurs when the vagina fails to grow correctly during embryological development, which is the period of gestation when the major structures and organs of the growing baby form.
90% of cases of vaginal agenesis are caused by Mayer-von Rokitansky-Küster-Hauser’s Syndrome (MRKH). It is not clear what causes MRKH; a very small number of cases are found to be inherited, but the vast majority occur in females with no family history of the disorder.
A very small number of people with vaginal agenesis, around 7 or 8%, have it as part of another condition called androgen insensitivity syndrome (AIS). This condition can be inherited, or it can occur spontaneously.
The treatment for vaginal agenesis depends on the severity of the condition. A vagina can be surgically created using a few different methods. A vaginoplasty is a surgical solution where part of the bowel, the inside of the cheek, artificial skin or tissue from the buttocks is used to form or complete the vagina. A process called self-dilation is a nonsurgical method. Dilating rods of progressing sizes are used by the patient to gradually form the vagina or increase the size.
A satisfying sex life is possible after vaginal agenesis treatment. The vagina will look and feel normal. Since the clitoris is not affected, sensations will still be pleasurable. If other reproductive organs exist and function normally, pregnancy may be possible.
Since the cause of vaginal agenesis is unknown, there is very little an expectant mother can do to prevent their daughter from being born with the condition. However, there may be steps that parents can take to prevent the condition from affecting their child’s mental health or lifestyle.
Counseling can be incredibly helpful for children and teenagers who have been diagnosed with vaginal agenesis. It can help them to process any worries they may have for the future, and help them work through issues with low self-esteem and gender and sexual identity which may arise as a result of the condition.
Visits with a dedicated sex therapist may be particularly important for a teenage girl with vaginal agenesis, because they can help them to work through concerns about their sexuality, particularly while they undergo physiological treatments which will allow them to function sexually. The idea of sexual activity may be very daunting, but with adequate counseling and treatment vaginal agenesis does not have to prevent someone from enjoying a healthy sex life and intimate relationships.