- MRKH is a congenital disorder of the female reproductive system.
- Girls with MRKH have normal ovaries and fallopian tubes, an absent or incomplete vagina, no cervix, and either an underdeveloped uterus (uterine remnant) or no uterus at all.
- Woman diagnosed with MRKH can have biological children with a gestational carrier. Other fertility treatment options such as uterine transplantation are still under research.
- Treatment options include no treatment, dilation, surgery, or a combination of both.
It’s natural for you as a parent/guardian to want to help your daughter. Knowing when and how to be helpful may be difficult in the beginning because you may not know exactly how she is coping. Your daughter may be quiet and withdrawn, retreating to her room, making it difficult to know if she wants to talk or be left alone. She may feel isolated or embarrassed because she is not menstruating and can’t take part in conversations about “periods” with her friends. It’s important to remember that most teenagers are naturally struggling for independence from their parents/guardians while at the same time seeking their support. The diagnosis of vaginal agenesis, treatment options, sexuality, and future fertility issues, make this struggle more complex than usual!
The following suggestions may help you to support your daughter as you and she become more comfortable with your new knowledge about her body.
- Encourage your daughter to ask questions and talk about her worries with you. There’s no right or wrong time to start a conversation with your daughter. Some parents and daughters find it easier to talk spontaneously while others prefer to plan a special time to chat such as during a walk together.
- Encourage your daughter to ask questions and talk about her concerns with her health care providers. Suggest that your daughter keep a notebook of any questions and concerns she may have for her health care team: health care provider, nurse, social worker. Understand that she may want to talk with her members of her team alone, without you present.
- Give your daughter as much privacy as possible. Privacy is important to the healthy development of all adolescents. In particular, your daughter will need time alone in her bedroom should she choose to use dilators to create a vagina. If she shares a room with a sibling, be sure to arrange time when she can have the room to herself.
- Reassure your daughter that you will ask her permission before talking about her diagnosis with anyone. Ask her if you may talk with one person who gives you support; for example, a favorite aunt.
- Don’t worry if you aren’t sure how to answer some of your daughter’s questions. It is fine to say “I don’t know” and offer to help find the answers. If your daughter is interested in learning more, it may be a good idea to share research tasks. This can provide a safe way to talk about MRKH by shifting the focus from your daughter to the condition. Your daughter’s medical team of experts can help answer questions, such as future fertility options.
- If you don’t know what your daughter needs…ask! You may find that your daughter doesn’t want to talk about her new diagnosis, while you are anxious to have a conversation about it. Alternatively, you may find that your daughter is very open about her MRKH while you are feeling that you need more time to process the information before you’re ready to talk about it. Everyone copes differently in challenging situations, and it is important for you and your daughter to know and respect what each of you needs from one another. Open communication about how you’re feeling is the best way to help your whole family navigate this new and uncharted territory together.