170 Million Women Suffer From This Crippling Disease—and Most Doctors Completely Miss It

For the 1 in 10 women with endometriosis, the pain of menstruation can be a crippling, life-altering barrier. Worse, doctors can miss the symptoms and fail to diagnose the condition: Kristin waited 19 long years to find relief.

The-Crippling-Condition-170-Million-Women-Have—and-Doctors-Miss-courtesy-Kristin-CostinCourtesy Kristin CostinWhen Kristin turned 12, she got her first period. Now a 31-year-old social media professional in Phoenixville, Pennsylvania, Kristin’s first menstruation was pure agony. “I started experiencing crippling lower abdominal, back, and leg pain. When I talked about my pain to others, they would tell me to ‘suck it up’. I just thought it was normal menstruation pain and so did everyone else, including my doctor.” A first period can reveal several things about your health, though those around you may not recognize how serious the situation might be.

As the months and years went by, Kristin became convinced her experience was more extreme than others. “My menstrual pain was so intense that I couldn’t get out of bed. My hands would clench shut, and I almost passed out many times. It forced me to miss school, social events, and work,” she explains. The pain controlled almost every aspect of her life. “I would be out of commission for at least three days every month. This meant missing school, calling in sick to work, and canceling plans. The pain was blinding and took over everything. Once my pain became chronic, everything about my life changed,” she says.

Feeling alone and misunderstood didn’t help, says Kristin: “At first my family didn’t believe my pain was as extreme as I said. My relationship with my boyfriend suffered and eventually fell apart. It felt like everything that I enjoyed was being ripped away from me,” she recalls. Desperate to know what was wrong, Kristin sought the advice of 15 different doctors over the years, yet none of them was able to diagnose anything wrong. “I was referred to multiple gastroenterologists, neurologists, orthopedic surgeons, OB-GYNs, and acupuncturists. One doctor even told me I should see a psychiatrist,” she explains. “I was passed along from one doctor to another with no answers. Many offered frightening possible diagnoses such as multiple sclerosis, a brain tumor, fibromyalgia, complex regional pain syndrome, and cancer. Each time the tests came back with nothing, I cried. All I wanted were answers and someone to understand what was happening to me. Not knowing was one of the worst and most terrifying parts,” she says.

Kristin was bewildered:”I was angry and frustrated that doctors were not able to give me answers and frequently dismissed the amount of pain I was in. I am still upset that most of those doctors never asked me about my menstrual cycle.” There are serious period symptoms that neither women nor doctors should ignore, but it still happens. “This is something that needs to change in conversations between health providers and women,” she says. Eventually, Kristin began to experience extreme back and hip pain in addition to her intense abdominal cramping. Though concerning, she assumed this pain was unrelated to the monthly issues that accompanied her period. “When I began experiencing hip and back issues I assumed that it was overexertion from exercising and my job as a restaurant manager at the time. The inflammation eventually became so intense that I knew that something else must be wrong—it felt like there was barbed wire pulsating in my hip and spine,” she explains.

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This excruciating pain eventually led Kristin to receive a diagnosis from an unlikely source. “The constant stabbing pain I experienced on the right side of my pelvis evolved into extreme inflammation and constant muscle spasms on the entire right side of my body. I was sent to a physical therapist for the issue, and she was the first person to mention the disorder,” she says. “The physical therapist had endometriosis and she told me that she thought I might have it too, so I began researching it extensively.” A visit to the ER for her pain confirmed the physical therapist’s suspicion that she was suffering from endometriosis, a disorder in which the uterus-lining tissue grows outside of the uterus. The tissue often attaches to nearby organs such as the ovaries, fallopian tubes, or intestines. In extreme cases, the tissue grows beyond the abdominal area. The disorder affects more than 200,000 women each year, and includes symptoms such as pain (usually in the lower back, pelvic region, rectal area, and may occur during bowel movements or sex), infertility, and abnormal bleeding—prior to menstruation or after sex; blood in the urine or stool is common. Though there is no cure for the disorder, treatment is available and includes hormone therapy, anti inflammatory medication, and birth control.

During Kristin’s ER visit for hip and back pain, doctors recommended surgery to identify the problem. “The doctors found a cyst on each ovary. One of the cysts was hemorrhaging and I had laparoscopic surgery to remove them. Before the surgery, I asked the doctor to look for endometriosis. The surgeon discovered endometriosis during surgery and removed what she could of the tissue,” she recalls.

Kristin suffered from pain related to the disorder for 19 years before that ER trip, and more than a dozen physicians missed her symptoms. Stories like Kristin’s have prompted the pharmaceutical company AbbieVie to start an education campaign called Get in the Know about ME in EndoMEtriosis. The goal is to educate women and their doctors about this difficult condition. Today Kristin is being treated by an OB-GYN specializing in the disorder, and uses physical therapy and exercise to ease her symptoms. (Here are nine exercises that can ease for period pain.) Kristin has partnered with the campaign to raise awareness for the condition that robbed her of so much in her young life. “I believe women are stronger together and the only way anything is going to change is to raise awareness and support each other,” she says. She advises other women with health concerns to be persistent in finding answers. She advises, “Don’t stop until you find someone who listens to you and is determined to help you. Never stop believing in yourself and your knowledge of your own body.”

Her experience with misdiagnosed endometriosis symptoms has fueled her passion for helping other women avoid the same frustration she felt. “I can’t bear the thought of other women going through years of debilitating pain, living without an understanding or accurate diagnosis,” she says. She recommends that other women visit the website MEinEndo.com to access resources and tools, such as a checklist and symptom tracker that allows women to log their pain and symptoms easily. Kristin says,”After sharing my story, I found that I could help others in their journey, and that helped me too because I knew I wasn’t alone.”

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