When my first period came at age 13, it involved blood clots and extreme pain. I didn’t know what to expect or what was considered “normal,” but, thankfully, my mother did. She recognized that my symptoms were unusual and immediately took me to see my pediatrician. I was first prescribed birth control pills, which seemed to help initially, but when my period remained heavy and painful, I was put on a different birth control pill that enabled me to have my period only four times a year.
I thought my situation was normal — albeit uncomfortable and inconvenient. No one ever suggested painful periods could be anything more than bad luck. I would hear women talk about menstrual cramping and see advertisements for medications to relieve menstrual symptoms … I just figured I had bad periods like so many other adolescent and adult women.
I believed that for years. …
Having painful cramps isn’t really something a typical 14-year-old girl wants to think or talk about. Most girls assume that it’s normal and just part of the process of growing up. But when intense pain started to interrupt Brittany Berg’s social and academic life, she knew she needed to speak up.
It began during her freshman year of high school when the pain would get so bad she couldn’t focus while she studied at night. She’d lie down, hoping for sleep, but would still be overcome with discomfort. The only female in her drum line at school, Brittany couldn’t easily explain to her bandmates why she was a little slower on some days, or why the pressure of holding the drum caused even more pain.
She tried her best to explain to her friends what she was going through, hoping they could relate, but since she didn’t understand it herself, it made little difference.
Finally, Brittany talked to her mother and saw a doctor. She had a pelvic ultrasound and was prescribed birth control pills, which are often used to regulate a women’s menstrual cycle. However, this treatment only added mild depression and weight gain to Brittany’s list of irritating symptoms. Frustrated, and still not knowing the root of her pain, Brittany tried another type of birth control pill that her doctor prescribed, one that is taken every three months instead. Even though the pain lessened a little, it was still there. …
During pregnancy, a baby’s reproductive system may not finish developing in the mother’s uterus. When this happens she may be born without a vagina and have other abnormal reproductive organs, the most common being Mayer-von Rokitansky-Küster-Hauser’s Syndrome (MRKH). It’s not unusual for the condition to go undiagnosed until puberty. The Center for Young Women’s Health at Children’s Hospital Boston offers free monthly chats for young women with MRKH, as well as host an annual conference where families whose lives have been affected by MRKH can come together, bond and learn about the condition. This year’s conference is happening on October 22. (Click here for details.)
In the following blog post, a three-time conference attendee describes how the experience has changed her understanding of MRKH and ultimately her views on life.
I could never have anticipated the profound effect MRKH would have on my life. At 17, I considered myself happy, confident and strong. But when I was diagnosed with MRKH all of those feelings were challenged. Suddenly, the only dream that seemed to matter was the dream of having a family.
Learning the reality of my diagnosis—I would never be pregnant because I was born without a vagina and uterus—devastated me. It shattered my confidence, robbed me of my happiness and put my strength to the ultimate test. It’s easy to be strong when you can’t imagine a life different from what you’ve come to expect; that strength becomes harder to muster when faced with an unknown future. After diagnosis I struggled to cope with something I didn’t understand and couldn’t fix. …