MRKH: All Guides

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MRKH: General Information for Teens

1in5000You may have just learned that you have MRKH (Mayer Rokitansky Kuster Hauser Syndrome). You’re probably thinking, “Why is the name so long?” It’s extra-long because this condition is named after all of the doctors who discovered it. Aside from being overwhelmed with the name of this condition, it’s also normal to feel confused, scared, and sad about having MRKH. It’s also perfectly fine if you simply feel relieved to know why you don’t have periods. Most likely you and your parents have a lot of questions. We hope that this guide will help answer your concerns. We also have a special guide for your parents.

What is MRKH?

MRKH is a congenital disorder that affects the female reproductive tract. Congenital means that it’s acquired during development and present at birth. About 1 in every 5,000 female babies has this condition. MRKH is a syndrome (group of symptoms). We don’t know the cause of this syndrome, but we do know that when a baby grows in their mother’s uterus (womb), organs and systems develop. One of the systems is called the reproductive system, which in female babies includes the uterus, cervis, vagina, fallopian tubes, and ovaries. The reproductive system is formed during the first few months of “fetal” life (while a baby is still in her mother’s womb). With MRKH, the reproductive system starts to grow but doesn’t completely develop.

Girls with MRKH have normal ovaries and fallopian tubes. Most often the uterus is absent or tiny. The vaginal canal is typically shorter and narrower than usual or it may be absent. Sometimes, there may be one kidney instead of two. About 3% of girls diagnosed with MRKH will have a minor hearing loss and some may have spinal problems such as scoliosis (curvature of the spine). Girls with MRKH have “normal external genitalia,” which means that everything on the outside of the vagina is not affected. This part of your body is called the “vulva” and includes what you can see – clitoris, urethra, labia, vaginal opening, hymen, and anus.

Vaginal area

Vaginal area

When is MRKH diagnosed?

The most common age for MRKH to be diagnosed is when a young woman is between 15 and 18 years old. That’s when a young woman is likely to see her health care provider because she hasn’t started her period. Some girls may find out at an earlier age or when they’re older.

What will happen at my doctor’s appointment?

Your doctor will probably ask you questions such as: “When did you notice that your body was changing… going through puberty?” Next, he/she may want to take a look at your outer female organs and also check to see how long your vagina is. Your doctor will gently put a Q-tip or gloved pinky finger at the opening of your vagina and then very slowly and carefully place the tip into the vagina to see how deep it is. If your doctor thinks you might have MRKH, he/she will probably order a test called an ultrasound or an MRI (magnetic resonance imaging). These tests do not hurt and are similar to having an x-ray. Usually your doctor will refer you to a specialist who has experience taking care of young women with MRKH. A pediatric/adolescent gynecologist is a doctor with special training in young women’s reproductive health.

What can a pelvic ultrasound or MRI show?

A pelvic ultrasound is usually the first test to check to see if a uterus or womb is present. This test can also confirm that you have two ovaries and two kidneys. Sometimes a very tiny uterus can be seen. A tiny uterus is called a “uterine horn or remnant”. You may need to have an MRI so that your doctor can see your female organs in more detail.

Can anyone tell that I have MRKH?

Some young women wonder if anyone can tell if they have MRKH. The answer is no. No one, except you and your gynecologist, can tell that you were born with an incomplete vagina and following treatment, with dilators or surgery, your sexual partner will not be able to feel any difference.

Will I be able to have children?

If you were born with an incomplete vagina but have a normal size uterus, it is likely that you will be able to become pregnant and carry a baby. If you were born without a uterus or if your uterus is tiny, you will not be able to carry a pregnancy. Since your ovaries are normal and make eggs, an egg can be fertilized with your partner’s or a donor’s sperm. Adoption is another choice for some couples.

Surrogacy: Someone else such as your sister, friend, or another person you choose, could potentially be a gestational carrier. Gestational carriers are women who agree to carry a pregnancy for a couple. Because this child would be created using your egg and your partner’s or a donor’s sperm, you would be the biological parent of this child.

Uterine transplants: This is a very complicated surgery that was first performed in Sweden, where nine patients have undergone transplants and four babies have been born. In the United States, specialists at the Cleveland Clinic plan to perform 10 uterine transplants as part of a major research study. The first uterine transplant in the U.S. took place in February 2016. Unfortunately the woman who received the uterus suffered complications and the transplanted uterus had to be removed. Doctors are working on changing the procedure to reduce complications in the future. Uterine transplants are highly experimental at this time and not all of the risks are well known. However, the procedure offers hope for women who aren’t otherwise able to carry a pregnancy.

Fertility options are improving every day. By the time you are ready to have children, there may be more options available to you.

Why might I have pelvic (belly) pain each month?

In general, some women can tell when they ovulate (make an egg) each month because they feel some discomfort or twinge in their lower belly. Most of the time this mild pain is nothing to worry about as it is caused from normal ovulation. Some women with MRKH may have a tiny uterus called a “uterine remnant” or “uterine horn.” This type of uterus or womb is not big enough to carry a baby but sometimes it can cause pelvic pain if blood leaks into the pelvic cavity. Your gynecologist will be able to tell if you have a small uterus and if it needs to be removed. If you have belly pain, it’s important to tell your medical team.

If I don’t create a vagina but I do decide to have sex, will anything bad happen?

If you have vaginal intercourse before your vagina is created using dilators or surgery, sex will likely be very painful. It could cause a tear in your vagina and bleeding. Creating a vagina with vaginal intercourse alone can be done but comes with risks and is usually very uncomfortable. However, there are other ways in which couples can be sexually intimate that do not involve vaginal penetration. When you are ready to become sexually active, having MRKH will not limit your ability to engage in other sexual activities, nor will it limit your ability to experience sexual pleasure.

Will I ever be able to have a satisfying sex life?

YES. Keep in mind that every woman, regardless of her age or health issues experiences sexual stimulation and sensitivity in different ways. Discovering what you enjoy sexually is an evolving process throughout your life. Thus, women with MRKH who are sexually active are encouraged to explore their sexuality with themselves and with their partner(s) to learn what feels both comfortable and pleasurable.

I’m in boarding school/college and have a roommate – How do I get some privacy to use the dilators?

Most young women find that they need privacy when using the dilators. When you are sharing a room, either with a sibling or roommate, it can be uncomfortable asking for time alone, especially if you don’t want to share any details of your diagnosis or treatment.

There are many reasons why people need to have some time alone: meditating, studying, napping, praying, etc. It’s always best to plan ahead, so check with your roommate to find out when she will be in class or out of your dorm room so you’ll know when you will have private time to use your dilator.

I’m really embarrassed with all the medical visits – will this ever get easier?

Many young women diagnosed with MRKH feel pushed into a world of new information and new experiences. It’s perfectly normal to have a range of emotions: sadness and anger, hope and worry, fear and embarrassment can all be part of the experience. Your medical team: your gynecologist, nurses, and social worker, are aware of this and they are trained to be sensitive to your unique situation. You may be the kind of person who wants a lot of interaction and information at all the visits or you may be someone who just wants the facts and prefers to keep the visits as brief as possible. One thing that you can do to make this process easier is to tell your medical team what approach would be most comfortable for you during your follow-up appointments. The team will do their best to make sure your appointments are as stress-free as possible.

My parents want to keep talking to me about MRKH but I already feel like my privacy has been taken away – how do I keep some boundaries?

An essential part of growing up is becoming more independent as well as setting some boundaries between you and your parents. When there is a medical issue that requires many appointments and exams, it can be hard to feel a sense of privacy. Additionally, since MRKH by definition involves both you and your parents thinking of you as a sexual person, the stress level in families may be very high at first. For many young women and their parents, the conversations you have been having about your body may feel uncomfortable or like an invasion of your privacy.

At the same time, just as you have had to get used to this diagnosis and what it all means, so do your parents. They are likely worried about you and how you are coping with this new information, and many parents show this by asking a lot of questions about how you’re doing. It is important for you to be honest with your parents about what you need, including respectfully letting them know when you don’t feel like talking. Your parents may find it helpful to talk to other family members like an aunt or a grandparent, but you should be included in conversations about who will be told about your diagnosis.

Your parents may also find it helpful to read the Parent’s Guide to MRKH, which answers the most frequently asked questions parents have.

You can also talk with members of your medical team for help with communicating with your parents.

Is there anyone else I can talk to about having MRKH?

Some young women find it helpful to talk with a parent(s) or other family member, while other girls prefer to talk with a counselor or a close friend. We know that it can be very helpful to talk with someone your own age that has MRKH. The Center for Young Women’s Health at Boston Children’s Hospital offers free monthly online chats for young women with MRKH and a yearly conference for teens/young women diagnosed with MRKH and their families. Your medical team may also be able to connect you with another young woman with MRKH, or help you find a counselor if this is something that you are interested in pursuing.

Am I still a biological woman?

It’s not uncommon for young woman to wonder if they are “really a girl” when they first learn that they are born with an incomplete vagina and uterus. If you have asked yourself this question, you are not alone. However, it’s very important for you to understand that you are a female. Your doctor may order a special blood test that can confirm that you are a genetic female and have 46XX chromosomes.

Will my vagina ever close up?

Once you have created a vagina your vagina shouldn’t change or shrink if you are having vaginal intercourse or using the dilator about once a week. If you are not sexually active, you should use the largest size dilator once a week for about 15-20 minutes (only after you are finished creating your vagina).

I don’t want to use the dilators now – can I wait until I feel ready? What happens if I never create a vagina?

The choice whether to have treatment – as well as how and when – IS UP TO YOU! Like any important decision, it is essential that you get all the information before you make the decision to have treatment. Talking with other women who have MRKH is valuable too. You control your body. You should never be forced or pressured into having treatment by your parents, partner or medical team. Rather, they should support you during the treatment process only when you decide the time is right. Your medical team has the responsibility of giving you information and resources to help you understand your reproductive health issues so YOU can make informed decisions. Your parents have the responsibility of helping you get medical care and helping you obtain privacy at home if/when you choose to use dilators. You have the responsibility to learn more about MRKH and to talk with a trusted adult if you are feeling overwhelmed.

If you have been diagnosed with MRKH or you would like an evaluation or second opinion, you may contact the Gynecology Program at Boston Children’s Hospital at: (617) 355-7648.

MRKH: Treatment Options

1in5000If you’ve been told that you have MRKH and your vagina is incomplete or absent, you have the following options:

  1. You can do nothing.
  2. You can create a vagina without surgery, using dilators that expand and stretch your existing vagina over time, using intermittent pressure. This is a nonsurgical procedure.
  3. You can have a surgical procedure, or “vaginoplasty”, or a combination of surgery and dilation.

Remember that YOU are in control of your own body. Deciding to create or not create a vagina should be your decision and if you decide that you want to, when to do so should be your decision too! If you are not planning to have vaginal intercourse, it is not something you need to do. If you plan to have vaginal intercourse now or in the future, creating a vagina is something you might want to consider.

Aside from doing nothing, there are three basic approaches to help you expand or create a vagina. If you’re thinking about treatment, we recommend that you consider using dilators first. All of the surgical options require general anesthesia and the use of dilators after the operation, therefore, surgery is not a quick fix, or a way to avoid the need for using dilators.

Accepted Standards of Care

The American College of Obstetricians and Gynecologists recommend vaginal dilators without surgery as the optimal treatment for creating a vagina. Health care providers recognize that this treatment is very effective and is noninvasive, and it does not have the risks associated with surgery and anesthesia.

Dilators: Sometimes the use of dilators is referred to as the Frank Method, named after the first health care provider who became famous for introducing a treatment that a young woman could do on her own, in the privacy of her own home. The original dilators were made out of glass. In the early 1980’s, another provider named Dr. Ingram created different size plastic dilators along with a bicycle seat that attached to them. Young women were then taught how to dilate using this special seat on a stationary bicycle. The Gynecology Program at Boston Children’s Hospital does not recommend the Ingram method because it is difficult and awkward to use.

Today, hard plastic dilators have replaced glass dilators. There are different kinds of dilators available, but the most widely prescribed dilators come in a set with different sizes ranging from XS-L. The smallest dilator is similar to the size of a slender tampon. Starting with the smallest dilator, a young woman learns how to hold it and apply pressure to stretch her vagina. In the beginning, most of the dilator is used as a “handle” (as it can only go in so far). Later, as the vagina stretches, more of the dilator can be inserted into the vagina. If you’re a patient at Boston Children’s Hospital and select this method of treatment, a trained clinician will teach you how to use the dilators. You will take one home with you and you should plan to use it twice a day for about 15- 20 minutes.

Is dilator treatment successful?

Dilator treatment is very successful. However, there can be variation in the success of dilator treatment, mainly related to the teaching and expertise of the health care providers who teach their patients this method.

Make sure that you work with a gynecology program that has at least an 85-95% success rate for helping their patients create a functional vagina. You should ask the gynecologist how many patients he/she treats monthly/yearly who have vaginal agenesis (incomplete or absent vagina) and ask about their success rate. If the program or health care provider that you are working with has a low success rate, you will likely get frustrated during treatment, have a poor chance of success using dilators, and thus be at a higher risk of needing a surgical procedure.

How often do I need to see my gynecologist?

If you decide to use dilators to create your vagina, you will be scheduled to return about once every 1-2 months depending if you have to travel far. At Boston Children’s Hospital we offer the option of Telehealth follow-up visits for patients who qualify. It is VERY important to keep your appointments with your gynecologist so he/she can check your progress to see if you are applying pressure in the right place and at the correct angle. As your vagina stretches, your gynecologist will give you the next (slightly bigger) dilator.

What are the surgical options for creating a vagina?

Surgery to create a vagina, also known as vaginoplasty, involves using tissue or skin from another area of your body (such as your bowel, or your buttocks) to create a vagina.

  • McIndoe procedure: A vagina is created with a skin graft, usually from your buttocks (bottom) or with a special skin-like material and a vaginal mold. Young women who have this procedure must stay in bed in the hospital after the procedure for about a week so that the newly created vagina will heal. After the operation, a soft dilator must be worn all the time for about 3-6 months, taking it out only to use the bathroom. Even though a vagina is created faster with surgery, it’s still necessary to use a dilator afterwards.
  • Williams procedure: This procedure involves the creation of a vaginal “pouch”. It’s sometimes used when other surgical procedures have failed. This procedure is more popular in Europe than in the United States. Dilators are necessary following the procedure, but for only about 3-4 weeks, instead of up to 6 months (which is more typical with the McIndoe procedure). The down side with this procedure is that the angle of the newly created vagina can be awkward and the cosmetic appearance may be poor.
  • Bowel vagina: This is a major operation which involves creating a vagina using a section of the bowel. The recovery involves 4-6 weeks of healing from major surgery, and dilators will need to be worn afterwards. Young women who have this procedure usually experience chronic vaginal discharge requiring the need to wear a pad all the time.
  • Laparoscopy-Vecchietti procedure: The Vecchetti procedure combines the use of dilators and a surgical procedure. This technique (named after the physician who developed it) involves applying a traction device to the outside abdomen (stomach) of a young woman. This is done during a laparoscopy while the patient is under general anesthesia. At the same time, a plastic bead (about the size of an olive) is placed in the vaginal space, and is held with string that is threaded up through the vagina, into the abdominal cavity, and out to the traction device (which is secured to the skin outside of the abdomen).The vagina is formed using continuous pressure, 24 hours a day. The tension is set by turning the “crank” that is on the outside of the abdominal wall. The tension pulls the plastic bead upwards, creating vaginal length. The vagina can be created in about 7-10 days, but requires a long hospital stay to complete the process. Afterwards, a second procedure with anesthesia is necessary to remove the equipment. It’s very important to understand that this procedure also requires the need to use vaginal dilators. Additionally, the traction device is awkward and often uncomfortable. The Vecchietti procedure is popular in Europe, but it is not commonly done in the United States.
  • Davydov procedure: The Davydov operation is a type of surgical procedure to create a vagina using a patient’s own peritoneal lining. The peritoneum is a membrane that lines the walls of the abdominal and pelvic cavities. While the patient is under anesthesia, an incision (cut) is made where the vaginal opening should be. Another incision(s) is made near the belly button to allow a thin instrument to be inserted into the peritoneal cavity. The peritoneal lining is then pulled down and stitched in place at the vaginal opening. The top of the newly created vaginal canal is then sewn closed. The vaginal space is then packed with gauze. The gauze is typically removed about two days after the operation. After the packing is removed, the patient must use various size vaginal dilators a few times a day for several months or until she becomes sexually active. The goal is not to obtain additional length or width but to maintain the (newly created) vagina and prevent scarring. Most women who have this procedure stay in the hospital overnight for observation and then return for follow-up visits within the 7 to 10 days after surgery.
Make sure you are working with a team of experienced medical professionals who are sensitive to your feelings and concerns. When deciding what treatment is best for you, it’s important to remember that dilators are the standard of care and should be tried before surgery is considered. With that being said, you should never feel pressure. The choice to have treatment or not should always be yours!

MRKH: Instructions on the Use of Vaginal Dilators

1in5000If you’re reading this guide, it’s likely that your gynecologist has recommended vaginal dilators to help you create a vagina. Vaginal agenesis (absence of the vagina) is a condition some young women are born with. The following information explains how to use vaginal dilators to create a vagina. It is safe and doesn’t involve surgery. Please note: This guide is not a recommendation for treatment nor should it be considered medical advice. Please consult your gynecologist if you have any questions.

The use of vaginal dilators should only be started after you have a complete exam, after your gynecologist makes the diagnosis of vaginal agenesis, and when you understand all of your options and have time to make a decision that’s right for you. Your gynecologist should review the following instructions with you. Monthly follow-up with your gynecologist is recommended while you are dilating.

Before You Begin: You must first receive teaching and counseling from your gynecologist or a trained clinician. It may feel awkward in the beginning to ask questions, but it’s very important so you will know how your vagina will be created.

How do the dilators work?

The dilators work by stretching the skin in your vaginal area, slowly over time. Most young women with vaginal agenesis are born with a vaginal dimple, where the vaginal skin puckers in a little bit. Other young women have a small vaginal opening. When a dilator is placed in this area and pressure is applied, the skin stretches and a vaginal canal will form.

How long will it take to create a vagina?

The process of creating a vagina can take as little as 2-3 months or as long as 18 months, depending on how often you use your vaginal dilator and if you’re using it correctly. Generally, if you use it properly for about 15-20 minutes, twice a day, and apply pressure, it will take about 3-6 months or less to create your vagina. It will take a lot longer if you don’t use it consistently. Most young women have good results when they remember to use their dilator at about the same time every day. Pick a time such as first thing in the morning and before you go to sleep so you’ll get into a routine. Once you feel comfortable, the dilator can be held in place with one hand so you can do other things such as read, watch TV, or talk on the phone.

How will I know if I am using the vaginal dilators correctly?

Before you take your dilator(s) home with you, your gynecologist or nurse should show you how to use it and allow time for you to practice placing the dilator in the right spot. You will use one dilator at a time beginning with the smallest size until you’re ready for the next size. It’s best to be in a semi-lying down position with your knees bent. Ask if you can use a mirror to help you find the spot where you will be inserting the vaginal dilator.

Getting Ready: Set aside about 20 minutes, twice a day when you won’t be interrupted and can have privacy in your bedroom or place of your choice. Work this out with a parent or other family member so they can make sure that no one bothers you. It can help to hang something on your bedroom door such as a Do Not Disturb sign, which will signal others in your household that you’re not available for a while.

  1. If possible, take a warm bath for at least 10 minutes before you use your dilator (optional). Although this step is not absolutely necessary, the warm water helps to soften the skin where you will be placing the dilator so it will stretch more easily. This can be especially helpful when you first begin dilating.
  2. Wash your dilator with warm water and mild soap then dry it off.
  3. Apply a small amount of water-based lubricant, such as K-Y Jelly® or Surgilube Jelly®, on the tip of your vaginal dilator.

Using the Dilator: Lie on your back (in a semi-reclining position) and bend your legs (the same position for a pelvic exam). Place the lubricated dilator against your skin below your urethra (where your urine leaves your body), right in your vaginal dimple. If you have a small vaginal opening, place the dilator in the opening. You can find the spot by slowly and gently sliding the tip of the dilator in the area right under your urethra.

Using pressure, hold the dilator in place for about 20 minutes. Push the dilator at an angle in the direction of your lower back or tail bone and simply hold it in place. Do NOT use an in and out motion. You should feel a lot of pressure but not pain. If you have pain, you may be pushing too hard. If you don’t feel anything, you may not be using enough pressure. After a few tries, it will feel like the right amount of pressure.

After you Dilate: Keep your dilator in a safe place where you will remember to find it. Although your dilator does NOT need to be sterilized, it’s a good idea to get in the habit of rinsing it off with mild soap and water and drying it before you put it away.

Keep scheduled appointments with your gynecologist, so he/she can check on your progress. As your vagina stretches, your gynecologist will have you use the next size dilator which is slightly wider than the one before. Bring your dilator with you to your gynecology appointments. You can keep your dilator in a small cosmetic case. A zippered pencil case also works well.

Deciding to use dilators should be YOUR decision and no one else’s. If you decide that you are ready to create a vagina with dilators, your parents and medical team should support you. You may decide not to create a vagina and that’s okay too. There’s no right or wrong decision, but it’s important to feel comfortable either way. If you decide to use dilator(s) and you don’t get good results after using them for many months, your gynecologist may suggest surgery.

MRKH: Transitioning to Adult Gynecology Care

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.

MRKH: Commonly Asked Questions

MRKH butterflyIf I don’t have a cervix, do I need a yearly Pap test?

It’s true that a Pap test is done to detect cervical cancer but the test can also detect vulvar and vaginal cancers. Most gynecologists therefore recommend that you have a yearly Pap test of your vagina starting at age 21.

Do I need a yearly GYN exam?

Yes. You should have a yearly check–up including a pelvic exam or a pelvic ultrasound once a year so that your primary care provider or your adult gynecologist can check your ovaries, vagina, and vulva.

Do I need to get the HPV vaccine?

Yes. At least 1 in every 2 sexually active young women has had a genital HPV infection. The HPV vaccine protects all women who are immunized from certain types of the human papilloma virus. There are two different vaccines. Gardasil® protects against the four types of HPV that cause genital warts (types 6 and 11) and cervical, vaginal, vulvar, and anal cancers (types 16 and 18); Cervarix® protects against two types; 16 and 18 and may offer some protection against types 31 and 45. If you’re sexually active, have had any sexual contact, or are thinking about having sexual contact, your best protection is to avoid sexual contact until you are vaccinated. Even though you don’t have a cervix, if or when you become sexually active you are still at risk for genital warts and vulvar or vaginal cancer just like any other woman.

Why might I have pelvic (belly) pain around the same time each month?

In general, some women can tell when they ovulate (make an egg) each month because they feel some discomfort or twinge in their lower belly. Most of the time this mild pain is nothing to worry about as it is caused from normal ovulation. Some women with MRKH may have a tiny uterus called a “uterine remnant” or “uterine horn”. This type of uterus or womb is not big enough to carry a baby but sometimes it can cause pelvic pain if blood leaks into the pelvic cavity. If this is the case, you will need to be on continuous hormone pills (birth control pills) to stop any bleeding until the tiny uterus is removed by a GYN specialist.

Is it harmful if I wait to create a vagina until I’m older?

The choice to have treatment, how, when, etc., is UP TO YOU! Like any other important decision, it’s essential that you get all the information before you make the decision to have treatment. Remember, you can create a vagina AT ANY TIME or not at all and still feel complete!

When should I tell my partner about MRKH?

There is no set rule which fits or works for all women, in all circumstances. Sharing anything intimate with a sexual partner should be based on trust, caring and the possibility of a future together but not all sexual encounters have these three components. It is up to you to use your good judgment. Since having MRKH comes with complications about fertility, some women who wish to be parents at some point may choose to have a conversation with their partner sooner rather than later so they can talk about their options. It can be extremely helpful to talk with other women who have MRKH to hear about how they have had similar conversations with their partners.

Will I be able to have a satisfying sex life?

YES. Most sexual pleasure and orgasm comes from stimulation to the clitoris and intercourse or vaginal penetration can enhance that sensation. Keep in mind that every woman, regardless of her age, health issues or intimate partner preferences, experiences sexual stimulation and sensitivity in different ways. Discovering what you enjoy sexually is an evolving process through your lifetime. Thus, all women are encouraged to explore their sexuality with themselves and with their partner(s) to learn what feels both comfortable and pleasurable. Having MRKH doesn’t impact your sexual enjoyment or your ability to have an orgasm.

If I have treatment will my vagina feel different to my partner?

No. After you create a vagina using dilators or sugery, no one will know that you were born with an incomplete vagina. Your partner will not be able to feel any difference.

Will I have pain with intercourse?

If you have vaginal intercourse before your vagina is created using dilators or surgery, sex will likely be very painful. It could cause a tear in your vagina and bleeding. Creating a vagina with sex can be done but comes with risks and is usually very uncomfortable. Typically, women do not experience pain with intercourse after they have completed dilation treatment. If you feel any discomfort after treatment it may be that you need to use a lubricant such as K–Y jelly before vaginal intercourse.

Can I still get sexually transmitted infections?

YES! Please remember that you should always use barrier protection such as female or male condoms every time you have sex to prevent HIV and other sexually transmitted infections (STIs).

Do I need to have intercourse to keep my vagina open?

No. You should not feel pressured to have intercourse until you are ready. You can prevent your vagina from getting smaller by using the largest size dilator or a vibrator just once a week for 15-20 minutes. When you are having intercourse or other kinds of vaginal penetration on a regular basis (1 or more times a week), you don’t have to use the dilator anymore.

What might keep me from having an orgasm?

Orgasm is the result of sexual stimulation that is a combination of emotional, psychological and physical pleasure. There are many reasons why women may not experience orgasm at any given time, but none that are directly related to having MRKH. Experiencing orgasm is a very individual process and involves getting to know your body and its responses every time you are stimulated. There are many distractions that prevent women from having an orgasm (climaxing or coming), such as being tired, having negative feelings about your body, ambivalence about your partner, or just not being “into it”, etc. Many women find that the process of stimulation is as exciting as the orgasm itself. Your sexuality and responses will evolve throughout your life time.

There are different things that can help:

  • Talk about any concerns you might have with your partner: communication is the most powerful form of intimacy!
  • Use a lubricant such as K–Y jelly.
  • Learn how to tense and relax your pelvic muscles, also called Kiegel exercises. These muscles contract during orgasm.
  • Learn what kind of stimulation arouses you and how to enjoy your body and share this information with your partner.
  • Talk to your GYN team if you have any questions or concerns.

How can I tell if I need to talk with a counselor?

Becoming overwhelmed or distressed by a situation is very common for everyone at some point or another. Sometimes symptoms of depression or anxiety feel unmanageable and in that case counseling may be helpful for addressing these symptoms. There are different kinds of therapists (clinical social workers, psychologists, mental health counselors, etc.) as well as therapies (cognitive behavioral, psychodynamic, mindfulness based, etc.) but the goal is the same: to help you manage your life and issues with more ease. If you find yourself beginning to be overwhelmed or concerned about something, the sooner you seek help the better. You can ask your primary care doctor or nurse, or your gynecologist for a referral, or seek help through your school counseling center (if you are in college) or a friend, family or clergy. If you ever have thoughts of self–harm, contact a trusted friend or family member immediately and go to the closest emergency room to insure your safety.

MRKH: Planning Ahead to Become a Parent, or Not

MRKH butterflyPlanning to start a family is a big decision regardless of whether or not a woman has MRKH. Becoming a parent is right for some people and not for others. Only you can know what the best decision is for your family.

As a woman with MRKH it is likely that your uterus is underdeveloped so you will not be able to carry a baby. Since you do have normal ovaries, you are able to have a biological child. This involves taking an egg from your ovary and sperm from a male partner or a sperm donor, and fertilizing them in a lab. When the egg fertilizes it becomes an embryo. The embryo is then placed in the uterus of another woman, who is called a gestational carrier. The woman doesn’t have any genetic connection to the baby; she simply is the carrier until birth. There are a lot of steps in between that involve much coordination by a fertility team. Insurance coverage for this procedure can unfortunately be somewhat complicated. Different insurance companies cover different costs and coverage can vary drastically between states and countries. The procedure itself, as well as paying a gestational carrier, can get very expensive. You’ll need to do your research to find out if surrogacy is legal in y our state and also explore what is financially possible for your family. Our “Resources” guide will allow you to compare the surrogacy and adoption laws by state. You should also check with your insurance company to find out what they will cover if you decide to have a child via surrogacy. Be aware that different states mandate insurance coverage for fertility treatments such as IVF. Currently only 15 states in the U.S. mandate that health insurance companies must cover infertility treatment. To find out information about the law in your state, click here.

Your options for creating a family include:

  1. Adoption: Domestic, International, Private, and via public child and family programs
  2. IVF (In–Vitro Fertilization): with a Gestation Carrier

MRKH: Your Feelings About MRKH

MRKH butterflyIt’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.

MRKH: Resources

MRKH butterfly

Every effort has been made to ensure that the URL’s listed in this section are as accurate and up-to-date as possible. We realize that the internet is constantly changing, and we can only guarantee that the links are accurate as of the date this booklet was printed.

Resources:

  • State by State Surrogacy Law Practice: This is a private website founded by a lawyer who has expertise with matters involving surrogacy. It is not a website that the CYWH necessarily endorses; however there is a color–coded map of the United States on the website that clearly explains the surrogacy laws that apply to each state, which makes it a very good resource. You can find out how the law works in each state just by clicking on the state image. Keep in mind that the practice of surrogacy is ever changing. An experienced attorney must still determine the prevailing practice in a particular state court at the time surrogacy is initiated.
  • US Department of Health and Human Services–Administration for Children and Families: Adoption laws vary significantly from state to state yet they must comply with general rules set by the United States Federal Government. This resource answers some of the questions you might have about adopting a child from child welfare services; however it is not meant to replace a conversation with an attorney that is knowledgeable about adoption laws, the cost, etc. where you live.
  • Domestic Adoption–Parents Magazine: This website is sponsored by “Parents” magazine and does a nice job explaining the different types of adoption offered in the United States. You’ll also find stories from families who talk about their adoption experience.
  • Intercountry Adoption–Bureau of Consular Affairs–U.S. Department of State: This website offers information for United States citizens who are considering adopting children from abroad. Adoption between the U.S. and other countries is different than domestic adoptions and is governed by both the laws of the country in which a child lives and the country in which the adoptive parents live. According to U.S. law, there are two different inter-country adoption practices. These include the “Hague Convention” process and the “Non–Hague” Convention process. An American citizen who wishes to adopt a child must follow the process of the country for which the child is from. You can learn about the adoption practices in most foreign countries by clicking “Country Information”, then searching for a country in the drop down menu.
  • Insurance Coverage for Fertility Treatments by State: The Resolve.org website provides visitors with a list of the 15 states that are mandated by law to provide infertility treatment. When you access the link you can look to see if your state is listed and then click to find out exactly what your insurance company is legally mandated by law to provide. If you don’t see your state listed, there is no law at this time that requires that insurance companies cover treatments such as IVF. However, your personal health insurance may offer coverage.