MRKH: Your Feelings About MRKH

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MRKH butterfly

It’s likely that your feelings about MRKH will change as you become older and more mature. At first, many young women report that they can think of nothing else much of the time, particularly right after learning about their diagnosis. This is natural. New information about your body and future has to be assimilated, experienced and understood on many levels. Often, during the process of dilation, or when it is completed and weekly “maintenance” is practiced, it may feel like a burden or chore. Yet as women move into their 20’s and beyond, and their lives fill with college, a career, new relationships, travel and hobbies, women often report a change in how often they think and feel about MRKH or if they think about it at all. With time, most women learn to view MRKH as a smaller part of their life, much like any chronic medical condition for which there is treatment, and life goes on with certain adjustments. This is sometimes referred to as establishing a “new normal.” Sometimes this happens naturally and sometimes it can be helpful to talk to a counselor or therapist to help you to get to this point. Regardless, having MRKH should not define who you are nor who you strive to be as an adult, parent, or professional. There is no need to limit your personal expectations or goals.

Moving Ahead….

There will be times, particularly at social events such as baby showers, family reunions, or even casual times with friends, in which conversation will naturally come up about fertility issues, children, or plans for children in the future. Try to anticipate the questions you might be asked and practice your responses. Of course, you cannot plan for every situation nor can you plan for exactly how you will feel “in the moment”. Remember, you are entitled to how you feel and how you react. After all, it’s your body, you do not owe anyone an explanation, and what you choose to say should be your decision. Just remember, if someone doesn’t know your story they are probably unaware of how their statements may affect you.

Button–pushing experiences: Most teens and woman with MRKH have had “button–pushing experiences”– times when something will set off their emotions. For example; it is completely normal to feel unsettled or sad when hearing about a friend or relative who is pregnant, or feel vulnerable, unhappy, or even angry when someone innocently asks about your plans to have children. As a teen you may have felt anxious when a classmate asked if you had a tampon or pad to lend, or maybe when your younger sister began her period, you felt upset. Hopefully you were able to learn ways to manage your responses and feelings during those times with the help of your support system.

The reality of having MRKH is accepting the fact that situations will come up in your young adult life and beyond, that will be both “button–pushing” and stressful. It can be very helpful to anticipate which circumstances might be difficult so that you can have a prepared response. It’s also important to validate your feelings and give yourself time to experience the emotions when they come up. Girls and women with MRKH have told us that some of the experiences they find particularly awkward and sometimes stressful include:

  • When other women talk about becoming pregnant and when people ask questions such as “When are you going to start a family?”
  • Medical situations in which you’re asked: ‘When was your last period?” or “How old were you when you got your first period?”
  • Having to explain MRKH to medical providers.
  • “Well–meaning” yet insensitive comments from people about the advantages of not having periods: “At least you don’t have to deal with cramps!”
  • Well–meaning but inappropriate comments from people who try to make you feel better by saying something such as: “At least you’ll be able to keep your figure.”
  • Receiving baby announcements, invitations to baby showers, christenings, naming, or bris ceremonies.

Even if you choose to have children with a gestational carrier or adoption, some people may “push your buttons” by asking intrusive questions about your childbirth experience. It is therefore very helpful to try to anticipate both the questions and your responses when you know you might be in a situation that could be potentially awkward and/or emotionally stressful for you.