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View Full PDFMRKH Guide for Parents and Guardians:
Commonly Asked Questions
 Intro |
Helping your Daughter |
| Accepting your Daughter's Diagnosis |
Talking with Siblings |
| Taking Care of Yourself |
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How is the reproductive system affected?
The reproductive system is formed during the first few months of fetal life. It includes all the female organs: uterus, vagina, fallopian tubes, and ovaries. Vaginal agenesis (incomplete or absence of the vagina) occurs when the reproductive system doesn't finish developing. When this happens, the vagina can be shorter than usual or absent. The uterus is also typically absent or smaller than usual. The ovaries (the organs that make hormones) and fallopian tubes are normal.
Why is it that we are only finding out about this now?
The average age that MRKH is diagnosed is between 15-18 years old. A young woman typically presents to her pediatrician at this time because she has not yet had her first period. If a pediatrician does an internal exam a diagnosis may be made right away. In other cases, a young woman is referred to a specialist such as an adolescent gynecologist. Typically further testing such as a pelvic ultrasound or MRI (magnetic resonance imaging) is done to confirm whether or not a uterus can be visualized and if there are 1 or 2 kidneys. Since a pelvic exam is not done at birth or during childhood check-ups, it's uncommon for this diagnosis to be made before the teen years. Girls with MRKH generally go through puberty like other young adults, and have secondary sex characteristics such as pubic hair and breast development. Therefore, it's rare for a health care provider to suspect that anything might be wrong before this time.
Are there other tests that are done to confirm this diagnosis?
In addition to an ultrasound or MRI, sometimes a blood test may be done to confirm normal karyotype (female genes) and ovarian function.
Is there any way I could have caused my daughter's diagnosis?
No. MRKH is not heredity or genetic. It's a congenital anomaly or birth defect that occurs during fetal development in about 1 out of 5,000 female births. There is no known cause for this condition and there is nothing an expectant mother can do to prevent this from happening to her unborn daughter.
When should my daughter start to create a vagina?
The best time for your daughter to either use vaginal dilators or have surgery is when she is ready. Timing is different for everyone. The most common age at which girls decide they are ready to create a vagina is around 16 or 17, before college. Sometimes girls wait until they are in college, and start treatment over summer break. Some young women prefer to wait until they have a sexual partner before beginning treatment and some decide not to do anything at all. Please remember that as a parent/guardian you may wish for her to address the issue as soon as possible to help resolve her vaginal agenesis, but this is your daughter's vagina. A vagina should be created when your daughter is ready and wants to create a vagina.
What if the vaginal dilators don't work or my daughter can't use them?
If your daughter is having difficulty or worried that she is using it incorrectly, she should talk with her health care team. If she is not pleased with her progress after she has used dilators consistently for about 6 months, she and her doctor should discuss the options of surgery or waiting until later.
What if my daughter isn't using her dilator?
There may be one or several reasons why your daughter is not using her dilator. She may feel like she doesn't have the time, is worried that it is painful, or perhaps she is concerned about not having privacy. It is fine to ask your daughter how things are going, or if she is feeling comfortable with her treatment plan but it is not okay to constantly remind her to use her dilator. It's important for your daughter to keep regular check-ups with her gynecologist so that the medical team can assess any difficulties she may be experiencing and to give her feedback and support regarding her progress. If your daughter continues to avoid using her dilator, it may be that she is simply not ready to create her vagina. Having a discussion about delaying treatment until she is ready may relieve your daughter's anxiety and allow her to have control over the situation.
Will my daughter be able to experience sexual pleasure?
Most sexual pleasure and orgasm comes from stimulation to the clitoris and intercourse can enhance that pleasure. Typically, women do not experience pain with intercourse after treatment. If your daughter feels discomfort with sexual intercourse it may be that she needs to use a lubricant such as K-Y jelly. Before attempting vaginal intercourse, your daughter should talk with her health care provider.
Will my daughter be able to have children?
If your daughter was born without a uterus or if her uterus is tiny, she will not be able to "carry" a pregnancy. Since her ovaries are normal and make eggs, she may be able to fertilize an egg with the assistance of fertility experts. A surrogate mother could then carry the pregnancy to term. Your daughter and baby's father would be the biological parents of the child. Adoption is another choice for some couples. Keep in mind that fertility options are improving every day. By the time your daughter is ready to have children, she may have more options available to her.
In rare cases, if your daughter was born without a vagina but has a normal size and normally-located uterus, it is likely that she will be able to become pregnant with the assistance of fertility interventions (in-vitro fertilization) and carry a baby.
How can I talk with my daughter when I'm uncomfortable discussing anything related to her sexuality?
Teens can usually sense when their parents are stressed. Be honest. It's fine to tell your daughter that you are feeling a little awkward. At the same time tell her that you want to talk to her and offer her support. Most likely she is uncomfortable too. Although you may both be feeling shy about talking, she will know that you are there to help her cope.
My daughter doesn't want to talk with me about her vaginal agenesis. What should I do?
Your daughter may be uncomfortable about discussing her diagnosis because this often raises issues about her sexuality. The diagnosis of vaginal agenesis may prematurely force a discussion about her sexuality that some daughters and parents find uncomfortable or embarrassing. Attempting to have a conversation when she is unwilling to talk will be frustrating for both of you, therefore it is better to wait until your daughter is ready to have an open conversation with you. You can suggest that she read about MRKH, join a medically moderated chat room discussion with other girls who have this diagnosis, or talk with another trusted friend, sibling, or adult about her feelings. You can also let her know that you are available to listen if she would like to talk. There are also online support groups that can offer support and guidance before, during, and after treatment.
Remember, it's ALWAYS important to begin communicating by asking your daughter how best you can help her! Your daughter should be as involved as possible in the planning of her care and ultimately deciding her treatment plan.
How can I be respectful of my daughter's right to make decisions about her body?
If your daughter is under 18 years old, your consent for medical and surgical treatment is necessary. It is critical that all options be discussed in clear language with your daughter so that she can participate in these important decisions about her body. Ultimately her medical team will respect her wishes regarding treatment.
Should I tell anyone about my daughter's diagnosis?
Telling someone about your daughter's diagnosis is a personal decision. It is always best to ask your daughter for her permission first. Most parents of girls with vaginal agenesis tell us that they are selective with whom they share their daughter's personal information with but at the same time they find comfort and support by talking with at least one close relative or friend.
How do I respond to people's questions about my daughter's diagnosis, the treatment and future implications?
It is up to you to decide if you want to share information and with whom. However, the more you are comfortable understanding your daughter's diagnosis, the easier it will be to respond to specific questions. Being able to share information factually will make these discussions easier. Additionally, listen carefully to what the other person is asking. What is it that they really want to know? Is it medical information or reassurance that your daughter will be physically and emotionally healthy? Answer the questions as well as you can and do not hesitate to say "I don't know." It is fine for parents to set limits when people ask questions they feel are inappropriate. Remember, your daughter’s privacy must be respected.
How can I tell if my daughter needs professional help?
It's not uncommon for young women with a new diagnosis of MRKH to have temporary changes in their emotions and behaviors as they adjust to a new understanding of how their body has developed. These concerns should decrease over time as your daughter understands her diagnosis, is able to verbalize her concerns, and becomes involved in her medical care. Typical signs that your daughter is upset may include changes in her sleep or eating patterns, worried comments about her body, concerns about treatments and medical appointments, and changes in behavior, such as becoming quiet and withdrawn, or aggressive and angry.
If the changes in her emotions and behaviors lasts longer than a few weeks or seem very concerning to you, your daughter may be having a more difficult time adjusting to her diagnosis. If you, your daughter, or her medical team has concerns, don't wait too long. You should talk with her gynecologist about having her meet with a counselor, therapist, or social worker. This can usually be arranged by obtaining a referral from her primary health care provider. It is essential that the counselor, therapist or social worker have experience with adolescents who have medical issues. It's important for the counselor (that she is referred to) have accurate information about MRKH. You can direct them to this health guide online or share written information with them prior to your daughter's first meeting.
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Updated: 10/20/2011
