| Tara Langdale

Vaginal Agenesis: How it affects female children

Vaginal agenesis is a condition that occurs in female babies during pregnancy. The baby’s reproductive system does not develop properly in the womb, meaning that she can be born without various reproductive organs. Some babies are born without a vagina and uterus, whereas some are born with a midline uterus, but without a vagina or cervix. The cause of this genetic abnormality is not known, and it does not affect any particular ethnic groups. Genetically the baby is still classed as being female.

Vaginal agenesis affects 1 in 5,000 to 7,000 babies and is often noticed after birth. However, sometimes it goes unrecognized until puberty, in the absence of a menstrual cycle. 90% of babies born with vaginal agenesis also have a condition called Mayer-von Rokitansky-Küster-Hauser’s Syndrome (MRKH). This often presents as lack of a cervix and uterus, and sometimes an absent kidney, or dislocated or fused kidneys. They might also have impaired hearing, and curvature of the spine or skeletal abnormalities. All patients will have an incomplete birth canal or no vaginal at all.

However, they are likely to have ovaries and normal external genitalia such as a fully functioning clitoris. Aside from the missing menstrual cycle, they will develop all other organs and functions associated with puberty (breasts, armpit hair, etc.)

WHAT ARE THE SYMPTOMS OF VAGINAL AGENESIS?

Vaginal agenesis often presents as follows:

  • A little pouch or dimple in place of a vaginal opening
  • No monthly menstrual cycle
  • If there is a uterus but no birth canal, pain in the lower abdomen

It is also worth noting that between 7 and 8% of vaginal agenesis patients are diagnosed with androgen insensitivity syndrome (AIS). This means that although they look female in appearance, they will not have a vagina, cervix, womb, ovaries, or fallopian tubes.

TREATMENTS FOR VAGINAL AGENESIS

Firstly, it is important to properly diagnose the condition. Testing can be done through the following means:

  • An external genital exam or modified internal exam
  • An ultrasound or MRI scan
  • Testing for Mayer-von Rokitansky–Küster-Hauser’s (MRKH) syndrome
  • Karyotyping (an examination of chromosomes via cell samples)

Treatment may not be necessary in the absence of pain or medical problems caused by the condition.

SURGERY

Once children with vaginal agenesis grow older, if they wish to have a normal sex life, they may opt for surgery to construct a functional vagina.  

VAGINAL DILATOR TREATMENT

The usual and most effective treatment for patients with MRKH is the use of vaginal dilators, as recommended by the American College of Obstetricians and Gynecologists (ACOG).

Sustained use of vaginal dilators can help to create a functional vagina for older girls who wish to have sexual intercourse. Vaginal dilator use must be regular – at least once or twice every day for 15 to 20 minutes with reasonable pressure – in order to stretch the vagina to an appropriate size and length. When done correctly, this can result in success as early as 2 months in, but it might take up to 18 months.

The vaginal dilators used will need to increase in size over time. Please see our guide on using vaginal dilators for more information on this. If the vagina is not naturally lubricated, a water-based lubricant can be used to assist the process; the same applies for sexual intercourse.

COUNSELING

It may be necessary for young women with vaginal agenesis to seek counseling in order to come to terms with the emotional impact of their condition. It can initially be quite difficult for them to accept the differences in their physical make-up and lack of fertility, but with assistance, they may be able to overcome this.

WHAT ARE THE IMPLICATIONS FOR REPRODUCTION?

Young women who were born with a uterus may be able to conceive and give birth if the birth canal is enhanced through surgery or vaginal dilators. If she was born without a uterus (or with a very small one) reproductive technology may intervene. For example, if she has egg-producing ovaries, a surrogate mother may be an option.

Vaginal agenesis is certainly a difficult condition, but there are options for many sufferers. Even if reproduction is not an option, a normal sex life can be possible – especially since the clitoris is unlikely to be affected. If you are interested in vaginal dilator therapy for vaginal agenesis, our site has plenty of information you should find useful. Thanks for reading.