THE BLOG
06/07/2013 05:15 pm ET Updated Aug 07, 2013

An MRKH Warrior Discusses Congenital Infertility

"You have never had a period?!? What is MRKH?" Unfortunately, women with MRKH are asked variations of these questions frequently, and each question takes a little bite of self-esteem, creates a familiar ache in the pit of the stomach. Family members, friends, acquaintances and even physicians and medical staff are bewildered by our answers; "My reproductive tract did not fully develop. I was born without a fully functional uterus, cervix and upper vaginal canal." The puzzled and incredulous stares, especially from nurses and physicians is particularly upsetting, as we know that we have to explain MRKH yet another time when we are feeling especially vulnerable.

MRKH (Mayer-Rokitansky-Kuster-Hauser) syndrome affects approximately 1 in 4,500 women worldwide. Other common terms for MRKH include Mullerian Agenesis and Vaginal Agenesis/Atresia (terms physicians do know). Present at birth, this congenital condition can also encompass other potentially life-threatening symptoms including: kidney defects, skeletal abnormalities and heart defects. Women with MRKH have fully functional ovaries and are genetically female (i.e. 46, XX). Although women with MRKH are incapable of carrying children, it is possible for most to have biological children through the use of assisted reproductive therapies and gestational surrogacy. New procedures (including experimental uterine transplants) are also being tested in Europe, giving hope to the next generation of women with MRKH.

An MRKH diagnosis typically occurs because of a failure to menstruate. Generally, teens see a local family physician or gynecologist first. Most medical doctors have never heard of MRKH; this lack of knowledge can prolong the time to diagnosis. In the USA, the patient will most likely be referred to several specialists at the nearest teaching hospital. Most patients see at least a geneticist and a gynecologist; some will also see an endocrinologist, a surgeon and a urologist. A few clinics also offer the patient the option to see a clinical psychologist who specializes in reproductive issues. The patient will be examined by these specialists, and an ultrasound, MRI or laproscopic surgery is usually done during this time. This process can take weeks or months, and can be very stressful, traumatic and invasive.

In addition to the physical aspects, an MRKH diagnosis is very emotional, as accepting the fact that you are very different than most of your peers during the volatile and vulnerable late teens can severely decrease self-esteem and increase feelings of isolation. In Western society, there is often shame involved, which leads to secrecy and has hampered widespread knowledge of MRKH. In non-Western countries, a diagnosis of MRKH is much more devastating, and can be life-threatening due to lack of awareness and fear.

To combat the shame and isolation, we founded the Beautiful You MRKH Foundation, Inc., a supportive online community where females with MRKH can be themselves. We also administer a Facebook support group, a blog and an informational Facebook page. Females with MRKH and their family members can ask embarrassing questions, find emotional support and forge lasting friendships. We have members from all over the world, and believe that through our differences, we will find our greatest strengths.

We started the Beautiful You MRKH Foundation because we survived the devastating diagnosis of MRKH; fought hard battles with ourselves and others as we accepted our diagnoses; and emerged as strong, determined, resilient and deeply caring women who understand and accept you just as you are-beautifully, perfectly, exquisitely you.

The mission of the Beautiful You MRKH Foundation is to create a supportive community that partners with medical professionals to increase awareness and empower women of all ages with MRKH to feel beautiful, just as they are.

GOALS of the Beautiful You MRKH Foundation:

  • Acceptance of MRKH! We work with females at all stages of their MRKH journey to increase self-acceptance of MRKH and rebuild self-esteem.
  • Advocacy for MRKH! We will spread the word about MRKH throughout the medical community, open dialogues about MRKH with the media and work hard to eliminate the shame and hiding that often accompanies a diagnosis of MRKH.

  • "The place to go" for medically accurate information about MRKH. As we develop our website, we will add scientifically accurate content (vetted through our Scientific Advisory Board) and links to medically accurate websites and publically available literature.

  • Partner with physicians to improve the experience of all females with MRKH and facilitate distribution of medical equipment to females who lack access.
  • Fund research into the causes of MRKH, as well as the short-term and long-term emotional impact of MRKH on women and teens.

We ENVISION a world where:

  • Physicians and their staff are knowledgeable and sensitive when diagnosing MRKH and treating women and teenagers with MRKH.
  • MRKH is not a source of shame or isolation.
  • All women with MRKH can connect with others and know they are not alone.
  • Reproductive opportunities are legal, safe and financially minimal.

Since launching our website in August of 2012 and our support group in late 2011, we provided online support to almost 400 females with MRKH and their families and one-on-one support for over 10 families. Our readership spans over 20 countries and includes active members from India, Pakistan, Australia, The Philippines, Malaysia, Indonesia, Africa, the UK, Europe, South America and North America.

Visit us at:

www.beautifulyoumrkh.org

BYMRKH Blog

BYMRKH Facebook Site

MRKH Support and Awareness