MRKH: Transitioning to Adult Gynecology Care

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MRKH butterflyCongratulations! You’re getting ready to transition to routine adult gynecology (GYN) care. It’s normal to feel a little nervous about this change at first, especially if you have been followed by your adolescent gynecologist for a while. As a woman, you’ll need to work with a gynecologist who is familiar with MRKH or willing to learn about it and who can address your questions about sexual health.

Health systems are different in centers across the United States. Some adolescent GYN providers see patients until 18, 21, or 25 and then recommend a gynecologist for follow–up in another academic adult hospital or community practice. Other gynecologists provide care across a women’s lifespan, allowing you to receive GYN care in the same practice. There is a difference though. When you were younger, your parent(s) or guardian most likely accompanied you during your medical or GYN appointments. As an adult, you will see your provider by yourself. The focus will be on you, not you and your parent(s)/guardian(s).

As you move from adolescence towards adulthood you will likely:

  • Take on new challenges and do more things on your own
  • Have more choices and options
  • Gain a new sense of freedom and independence
  • Take on more responsibility for your health care

If your parent(s) or guardian has been making your appointments and communicating with your gynecologist, it might feel awkward at first to advocate for yourself, make appointments and communicate with your medical team directly. The more responsibility you take for these things, the easier it gets, and who else knows you best? An important aspect of becoming an adult is establishing a support system that includes family, friends, and health care providers.

People who can help you transition your care to an adult gynecologist:

  • Your pediatrician and your adolescent gynecologist
  • Another member of your GYN team (nurse and/or social worker)
  • Your parent(s) or guardian(s) – Ask them to help you find a gynecologist who is listed on your health insurance plan.
  • An older sibling or relative
  • A friend with MRKH who has been through the same process

Not every gynecologist has experience with treating patients who have MRKH so you’ll need to ask. For example; you could call the doctor’s office and ask the scheduling person if the gynecologist has experience seeing women who have been diagnosed with MRKH. Another way to ask is, “Does Dr. _ (or anyone in your practice) have experience treating women with “congenital anomalies of the reproductive tract?” You should also ask if the gynecologist can provide fertility care, meaning they can help you if and when you want to learn more about options to start a family. If you cannot find a gynecologist who knows about MRKH, or prefer to have your primary care doctor or nurse practitioner provide your care, you can ask if she/he is willing to learn about MRKH. You could then give them written information about MRKH and have your current gynecologist write a summary about your course of treatment thus far.

As a young adult moving toward adult care (GYN and general health), you should be able to:

  1. Learn about your health insurance coverage and the amount of your co–pay and/or deductibles.
  2. Contact the Medical Records Department where you currently have your GYN care and sign a release to have your records sent to your new gynecologist (and adult health care providers, if applicable) or pick up a copy and bring the documents with you to your first appointment.
  3. Make a list of all the medications you take and write down any allergies you have (if applicable).
  4. Create a brief timeline of your GYN/medical history: it’s very useful to have the dates of diagnosis, treatment, names of your providers, etc. at your fingertips without having to search for this information.
  5. Know the names and phone numbers of all your health care providers, then store the contact information in your phone or someplace else where the information is readily available.
  6. Add your GYN appointments (and other medical appointments) in your calendar.

If you have to change or cancel a GYN (or medical) appointment, make sure you call the office well in advance. Some medical offices will charge you for the visit unless you contact them 24–48 hrs. before your scheduled appointment.

Take this short quiz and find out if you are close to managing your own GYN and other medical care.

  • I can explain MRKH (and any other medical conditions I have) to my GYN and medical providers. (If not, it’s very helpful to provide your GYN and other medical providers with a copy of the MRKH guide for health care providers.)
  • I know the names and phone numbers of all of my health care providers.
  • I ask questions during my GYN and other medical appointments.
  • I know what medications I take and I have a list that I bring to my GYN and medical appointments. I tell my providers when I no longer take certain medicine(s) and when I start a new medicine(s).
  • I feel comfortable responding to questions my gynecologist and other medical providers asks.
  • I am able to schedule my GYN and other medical appointments by myself and I have a way of keeping track of them so I don’t miss appointments.
  • I know about my health insurance coverage and how much my co–pay is for different medical services.
  • I know where and how to obtain a copy of my medical records.
  • I am able to get to my GYN and other medical appointments by myself.
  • I know where to get my prescriptions filled, and have called the pharmacy when I’ve had questions or needed refills.

If you checked all or most of the statements: You’re already taking on adult responsibilities and you are prepared to transition your GYN/medical care to adult providers. Talk to your current gynecologist about a transition plan.

If you checked more than half of the statements: You’re on your way! You are actively taking on many new responsibilities regarding your GYN and medical care. Pick a few more responsibilities to do before your next appointment. Begin talking about transitioning with your GYN provider.

If you checked less than half of the statements: Now is a good time to start taking on more responsibilities from the checklist and practice them at your next appointment. If you need help, ask a parent, friend, social worker, nurse, or doctor.