A Guide for Teens
- MRKH is a disorder (from birth) that affects the female reproductive tract.
- Girls are usually diagnosed between the ages of 15-18 when they don't get a period.
- Treatment options involve dilators, surgery, or a combination of both.
- After treatment, young women with MRKH can have a normal sex life.
|Frequently Asked Questions|
|Diagnosis||Vaginal Dilator Instructions|
You 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 health care providers 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. 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 the mother’s uterus (womb), organs and systems develop. One of the systems is called the reproductive system, which includes the uterus, 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 vagina 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 will have a minor hearing loss and some may have spinal problems such as scoliosis (curvature of the spine).