MRKH: Commonly Asked Questions

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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.