- 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.
- Women 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, dilations, surgery, or a combination of both.
It’s common to experience a range of emotions when your daughter is diagnosed with MRKH, such as confusion, guilt, sadness and helplessness. Some parents/guardians may feel overwhelmed, or may move into “high gear”, seeking all the information they can access over the internet or from other health care providers (). You may feel the need to discuss your daughter’s new diagnosis frequently with your family and friends or you may prefer to withdraw from friends and family for a while. It’s also common for parents/guardians to want to “check-in” with their daughters more often than usual about their thoughts or feelings. Typically parents/guardians compare these feelings to “riding a roller coaster” of emotions.
As you learn more about your daughter’s diagnosis and treatment options, it’s unlikely that you will feel the same intense feelings that you initially experienced. Over time you will begin to accept your daughter’s diagnosis and be able to support her emotionally and with any treatment she chooses.
Taking Care of Yourself
Taking care of yourself is important for you and your daughter under any circumstances, and particularly when dealing with a diagnosis related to her sexual and reproductive health. As you become more comfortable with your own reactions to her diagnosis, you will feel stronger, enabling you to support her. Parents/guardians need time to separate what they feel from what their daughter might be feeling.
- Find reliable sources of information about MRKH and the surgical and non-surgical treatment options as well as the option to delay treatment.
- Keep a notebook or journal and write down questions as you think of them. Bring it with you to your daughter’s medical appointments.
- Talk about your worries and concerns with your daughter’s medical team, your spouse or significant other, or a close friend or family member. Many parents have expressed that it is much easier to be supportive to their daughter when they accept ongoing support for themselves.
- Learn about helpful ways to cope with stress such as deep breathing, relaxation exercises, meditation, and yoga.
- Join a parent support group or find out about networking opportunities with other parents through your local hospital, clinic, or online chats.
- Talk with a mental health counselor or social worker if you are having difficulty coping.
Talking with Siblings
It’s essential to decide with your daughter what she wants her brothers or sisters to know, if anything, about her diagnosis. You can help guide her about what should be said to whom and by whom. She may not want them to know anything initially and may choose to discuss it after she has become used to her diagnosis. However, if your daughter will be using dilators, she is going to need some private time. Then, it may be helpful to say something to her siblings such as, “Your sister is healthy and she has some special medical issues she needs to take care of. She will need to have some private time for herself every day”. The information that you and your daughter share with her siblings will depend on the age, gender, language development, the quality of their relationship and the personality of the child. If siblings are adults, your daughter may choose to talk more openly with them.