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.
After a disappointing trial of remedies, a family friend shed light on a possibility—that Brittany could have endometriosis, a condition where the tissue that normally lines the uterus (the endometrium) grows in other places, such as the ovaries, fallopian tubes, bowel, bladder, appendix and the area behind the uterus called the cul-de-sac. This misplaced tissue can cause painful periods and mild to severe pelvic pain.
Fueled by the possible discovery, Brittany’s mom searched online for experts on the condition and found overwhelmingly positive results for Marc Laufer, MD, chief of gynecology and co-director of the Center for Young Women’s Health at Boston Children’s Hospital. Impressed by what they read online, they made an appointment.
“At first, I wasn’t sure about seeing a man about such a private issue,” says Brittany. “But I needed a savior, and I’m so glad I did.” Brittany told Laufer about her struggle and her pain, and he recommended a procedure called a laparoscopy to determine the cause of her pelvic pain. The procedure would allow Dr. Laufer to look inside Brittany’s abdomen using a thin surgical telescope with a small lens on the end of it—the only way to confirm a diagnosis of endometriosis or figure out if there was another problem, such as appendicitis or ovarian cysts. Laufer explained that if he found endometriosis he would “destroy” it—which should only be done by a skilled surgeon who is accustomed to recognizing endometriosis lesions in adolescent girls. By surgically removing the endometriosis or tissue implants, pelvic pain is significantly lessened.
While she was looking forward to her surgery, she wasn’t prepared to get a call from her mother while she was on the school bus that week, saying that due to a schedule change, she could actually have the procedure the next day.
She was nervous and had to mentally prepare herself as quickly as possible; but the next morning, she and her favorite teddy bear entered Boston Children’s Hospital, ready to find out the reason for her pain.
She woke up, groggy from anesthesia, and saw her teddy bear wearing a hospital bracelet. Her recovery in the hospital and the trip home that afternoon were a blur but after a few days of rest the reality set in—her pain was gone.
“I felt so good, completely different,” says Brittany. The biggest change, she recalls, was her positive attitude. “I didn’t realize how much my spirits were lowered when I was experiencing pain, everything just felt like an uphill battle. But ever since my surgery, I have a clearer head and it’s easier to focus on the good things.”
Endometriosis is a condition where tissue that lines the uterus grows in other places, like the ovaries. Without proper diagnosis and treatment it can be very painful.
Brittany, now 16, has had such a positive experience at the Center for Young Women’s Health that she now helps educate other girls so they know that even though endometriosis can’t be cured, their pain can be managed and their lives will go on. She’s been writing for TeenSpeak, the center’s blog, and even plans to co-facilitate a teen support group with Phaedra Thomas, RN, BSN, the center’s nurse educator, at Boston Children’s upcoming conference for teens and families.
“I’m impressed with Brittany’s positive attitude,” says Thomas, “and her blogs are an inspiration to other young women who are trying to cope with this often debilitating disease.”
Brittany’s involvement was a no-brainer for her. “I want people to understand that there really are people out there who want to help and be supportive,” she says. “There is something you can do about your endometriosis.” And she is living proof.
Living with endometriosis: A conference for teens and families, to be held on April 6, 2103, at Boston Children’s Hospital, is an annual opportunity for young women, 14 to 22, who have been diagnosed with endometriosis and their families to come together for education and support. Attendees can learn about new developments and treatments for endometriosis, relaxation techniques, managing the symptoms and getting support.
For more information about the conference, visit youngwomenshealth.org, or call Phaedra Thomas at 617-355-7712.