About 6.5 million in the United States, people suffer from endometriosis, a painful condition in which the uterine lining spreads and grows outside the uterus. But this statistic likely vastly underestimates the prevalence of endometriosis because it is notoriously difficult to diagnose.
Many of the symptoms — ranging from heavy, painful periods and painful sex to gastrointestinal issues and severe fatigue — are associated with other reproductive issues. health problemsincluding ovarian cysts and pelvic inflammatory disease. Additionally, the pain associated with endometriosis is often dismissed by doctors as normal menstrual cramps.
EThe only surefire way to diagnose endometriosis is to have a laparoscopy, a small surgical procedure that can identify the size and location of the endometriosis. But it’s usually not the first test doctors recommend. Therefore, it may take years of inconclusive testing and misdiagnosis before the disease is correctly diagnosed. In fact, endometriosis is so often misdiagnosed that the condition has taken on the nickname “the failed disease.”
Below, women diagnosed with endometriosis share what it is physically like to live with the disease. They hope their stories encourage others with symptoms to seek treatment and advocate for an accurate and timely diagnosis.
Extremely painful and heavy periods
Jaime Henson, a nurse practitioner who was diagnosed with endometriosis at 32, said her symptoms started between the ages of 14 and 18 before she was officially diagnosed.
As a teenager, she had extremely painful and irregular periods. At one point, her period lasted for over a month. “I didn’t want to go out and do things because of the pain and the nausea,” Henson said.
Blaine Mallory, a woman with endometriosis, said she lost a ton of blood in seven to eight days when she had her period. During her period, she experienced extreme cramping and dizziness.
“It was iron deficiency brought on by my period,” Mallory said. Like Henson, Mallory’s period pains intensified over the years and were localized in her left ovary, which she later learned was covered in endometriosis.
People are often told that period pain is a normal part of menstruation, leading many people with intense or severe pelvic pain to believe that it is simply part of having a uterus. Although it’s common to feel mild discomfort during your period, severe pain that affects your quality of life or your ability to function is not normal.
“I didn’t know it was different and how it was ‘abnormal,'” Henson said.
Pelvic pain during ovulation
Ultimately, Henson’s Pain increased and remained a problem throughout the month, not just while she was on her period.
“I had extreme pelvic pain to the point that I couldn’t stand up straight and had to walk bent over,” Henson said.
Kylie Meyer, a 33-year-old woman who recently had a hysterectomy to treat her stage 4 endometriosis, said her pain also flared up at first during her period, but got worse and also happened during the ovulation. The pain, which she describes as cramping, was usually localized to one side of her body, rotating between the left ovary and the right ovary each month.
“There were times when I was shopping and I had to put my hand, basically, in my pelvis to try to pressure the pain just to walk through the store,” Meyer said.
Urinary and gastrointestinal problems
Henson said she sporadically noticed there was blood in her urine and often felt like she had a urinary tract infection – but when she was tested for a UTI, the test results were normal. In addition, she developed deep rectal pain. Despite several tests, her gastrointestinal specialist could not identify the root of the problem.
Meyer also developed Gastrointestinal problems. “I started getting bloated to the point where my stomach was distended,” she said. The bloating became so severe that her skin ached from being so stretched.
Struggling with unexplained infertility
Sheila Peterson, a woman diagnosed with endometriosis at age 34, beinggan trying to get pregnant at 30. After several failed attempts, she was diagnosed with “unexplained infertility”.
She underwent several cycles of intrauterine insemination and in vitro fertilization, but still did not become pregnant. When she was finally diagnosed with endometriosis, she realized what was preventing her from conceiving. Estimates suggest that approximately 47% of infertile women suffer from endometriosis.
“I can’t help but wonder if it was caught when I was younger if our fertility journey would have been easier,” Petersen said.
Chronic and intense fatigue
One of the most debilitating symptoms Meyer faces is fatigue that limits her ability to get out and live her life. Because endometriosis is an inflammatory disease, the body is constantly working to fight inflammation. Meyer learned that she needed to set aside a few days each month to rest or her body would become too tired.
” It’s exhausting. I can no longer do things that I was able to do before,” she said.
Meyer hopes that by sharing her symptoms, she can prevent others from going down a similar path.
“If I had been diagnosed earlier, he probably wouldn’t have reached severe stage 4 with a frozen pelvis — and who knows if my uterus might have been saved had I been diagnosed earlier,” Meyer said.
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