Vaginal Agenesis | Diagnosis & Treatment

How is vaginal agenesis diagnosed?

The first step in treating your child is making an accurate and complete diagnosis.

Testing is especially important for vaginal agenesis, in order to understand the extent of the reproductive anomalies. Young women typically present for testing sometime during the middle teen years when they experience primary amenorrhea, or lack of a menstrual period after having normal breast development. 

Testing options:

  • external genital exam
  • modified internal exam
  • ultrasound
  • MRI

Testing for Mayer-von Rokitansky–Küster-Hauser’s (MRKH) syndrome         

  • Karyotyping
  •  Karyotyping is a test that allows doctors to examine chromosomes in a sample of cells and pinpoint specific genetic causes of a disease.
  • MRKH has a karyotype of 46 XX, which is a normal karyotype for all women. All girls diagnosed with MRKH are genetic females.

What are the treatment options for vaginal agenesis?

Unlike most medical conditions in which you seek treatment immediately after diagnosis, with a vaginal agenesis your doctor will typically not intervene immediately unless there is pain, or a specific medical reason to proceed. It's entirely up to your daughter to decide when and if she is ready for treatment. She needs time to understand her condition and grieve the emotional disappointment of not having a complete reproductive system.

She may opt to wait or do nothing. If she plans to have sexual intercourse now or in the future, she may decide to create a vagina. Many girls with vaginal agenesis decide to create a vagina during their teenage years.

Vaginal dilators

Dilator treatment is the standard, most efficient treatment for MRKH. It's recommended by the American College of Obstetricians and Gynecologists (ACOG) as the first choice of treatment to create a vagina for girls with MRKH.

The main advantage of vaginal dilation is that it doesn't require surgery. The main disadvantage is that it requires using a dilator once to twice a day until the vaginal canal is stretched to a normal length.

A vaginal dilator is hard smooth plastic and shaped similar to a tampon. When pressure is applied by hand over time it stretches the vagina. Ideally, it should be used 15 to 20 minutes twice each day until the vagina is complete which can be anytime between 2 months to 18 months. The size of the dilator will be increased as time goes on. For more information, read the following guide: Instructions on the Use of Vaginal Dilators.

It should be noted that a young woman with vaginal agenesis can have normal orgasmic function as the clitoris and the external genitalia are formed normally.  The vagina may have natural amount of lubrication or a water-based lubricant is recommended during intercourse if there is a lack of natural lubrication. The success rate of vaginal dilatation with the utilization of dilators depends on how frequently and consistently the dilators are use as well as the amount of pressure that is applied.