Overview
Vaginal agenesis is a rare disorder where the vagina doesn't develop properly, and the uterus may only develop partially or not at all. This condition is present before birth and can be associated with kidney or skeletal problems. It often goes unnoticed until puberty when a female does not begin menstruating. Treatment with a vaginal dilator or surgery can create a vagina, enabling vaginal intercourse. The genitals may appear typical, but the vagina may be shortened or absent. Other associated issues may include problems with kidney and urinary tract development, changes in bones, hearing problems, and other congenital conditions.
Understanding the disease
Symptoms
The symptoms of vaginal agenesis may include: vaginal dryness, vaginal burning, vaginal discharge, genital itching, burning with urination, urgency with urination, frequent urination, recurrent urinary tract infections, urinary incontinence, light bleeding after intercourse, discomfort with intercourse, decreased vaginal lubrication during sexual activity, and shortening and tightening of the vaginal canal.
Risk Factors
Risk factors for developing vaginal agenesis include hormonal changes, such as those associated with pregnancy, birth control pills, or menopause, sexual activity, having a sexually transmitted infection, medications like antibiotics and steroids, use of spermicides for birth control, uncontrolled diabetes, use of hygiene products like bubble bath, vaginal spray, or vaginal deodorant, douching, wearing damp or tight-fitting clothing, and using an intrauterine device (IUD) for birth control.
Development
Vaginal agenesis occurs when the mullerian ducts, which are tubes that normally develop into the uterus, fallopian tubes, and upper part of the vagina during fetal development, do not develop properly. This underdevelopment results in an absent or partially closed vagina, absent or partial uterus, or both. The exact cause of vaginal agenesis is not clear, but it is thought to occur during the first 20 weeks of pregnancy.
Assessment and Diagnosis
Triage
You should see a healthcare provider if vaginal agenesis is suspected, especially if you have any of the following symptoms:
- Thin, gray, white, or green vaginal discharge
- Foul-smelling, "fishy" vaginal odor
- Vaginal itching
- Burning during urination
- No menstruation during puberty If you or your doctor suspect vaginal agenesis, your healthcare provider can perform a physical exam and may recommend additional tests, such as an ultrasound or MRI, to confirm the diagnosis. Treatment usually involves the use of vaginal dilators and, in some cases, surgery to create a vagina.
Diagnosis
Vaginal agenesis is typically diagnosed during puberty when menstrual periods don't start, even after developing breasts and having underarm and pubic hair. Your healthcare provider may also diagnose it earlier during an evaluation for other problems or if parents or a doctor notice a baby has no vaginal opening. The diagnosis is confirmed through blood tests, ultrasound, and magnetic resonance imaging (MRI).
Management and Treatment
Complications
Potential complications of vaginal agenesis may include:
- Difficulty with sexual intercourse: Women with vaginal agenesis may experience difficulty engaging in sexual activities due to the absence or shortening of the vagina.
- Incomplete or partial development of the uterus: Some women may have an absent or only partially developed uterus, which can lead to complications during pregnancy, if possible.
- Chronic abdominal pain: Presence of endometrial tissue in the absence of a normal uterus may cause monthly cramping and chronic abdominal pain.
- Urinary tract issues: Vaginal agenesis may be associated with problems in the development of the urinary tract, leading to complications such as urinary tract infections or difficulties in urination.
- Other congenital conditions: Women with vaginal agenesis may have other congenital conditions affecting the heart, gastrointestinal tract, or limb growth.
- Emotional and psychological impacts: The diagnosis of vaginal agenesis can be emotionally challenging for some individuals, leading to anxiety, depression, or body image issues. It's important to note that not all women with vaginal agenesis will experience complications, and treatment options such as vaginal dilators and surgery can help manage these potential issues.
Treatment
The primary treatments for vaginal agenesis include the use of vaginal dilators and, in some cases, surgery. Vaginal dilators are tubelike devices that can stretch the vagina over time when used regularly. This technique is often successful in creating a functional vagina, enabling individuals with vaginal agenesis to have vaginal intercourse. In some cases, surgery may be necessary to create a vagina or further improve its functional capacity. Hormone replacement therapy may also be considered in some cases to alleviate symptoms related to the decrease in estrogen levels. It is important to consult a healthcare professional for an accurate diagnosis and personalized treatment plan.
Preparing for medical consultation
To prepare for an appointment for vaginal agenesis, you should gather information about your symptoms and medical history, including any relevant family history. Make a list of your symptoms and when they started, as well as any medications, vitamins, or supplements you are taking. It may also be helpful to write down any questions or concerns you have about your condition. Additionally, you should prepare to discuss any personal information that may be relevant to your health, such as your sexual history and any risk factors for genetic or developmental disorders. It may be helpful to bring a family member or friend with you to the appointment for support and to help remember important information discussed during the visit.