Hear from women living with endometriosis

Have you ever been told something like, “Period pain is part of being a woman”? Women can assume that pelvic pain is normal because they may be conditioned to think so. At what point does your pain become something more than normal? It’s important to talk with your doctor if you’re experiencing any type of pelvic pain and express your symptoms fully. For inspiration on how to do this, hear from women about when they realized their pain wasn’t normal.

Endometriosis can take a while to properly diagnose—averaging anywhere from up to 6 to 10 years, in fact. This happens for a few reasons, including: 1. Symptoms being dismissed as “just bad periods” (this is especially true of younger women), and 2. Some symptoms of endometriosis may be similar to symptoms of other diseases.

Anne M. (diagnosed 2010)

“I call it a backwards journey. I had known for years that something wasn’t right. I would say probably as young as my midteens I had intense pain around my pelvic area,” Anne explains. “Then, in my early 20s, I had really painful periods where I just felt sick every month. I remember talking about my issues with my doctor at the time, and they did a couple of different tests and never really found anything. They thought maybe I just had bad periods. So, I kind of just went on that way.”

In Anne’s late 20s, the pain still had not gone away. “My friends weren’t having this, and I knew something was wrong. I had spoken up to my doctor and just tried to say, ‘Look, this isn’t normal,’ but they kind of brushed it off and said, ‘It’s just, you’re getting older, you’re almost 30, your body kind of changes.’”

It wasn’t until Anne had surgery to remove an ovarian cyst that she got answers. Anne was scheduled for an outpatient surgery, but ended up staying in the hospital overnight. It was during this hospital stay where she finally received an answer to her pelvic pain; her official diagnosis was endometriosis. “When I say it was a backwards journey—I knew for well over 10 years that something wasn’t right, but didn’t have it confirmed until many years later.”

“A huge challenge [I faced] was getting diagnosed,” Anne points out. She also wishes she had been diagnosed sooner. “Maybe that’s it—I never felt like anyone really listened to what I had to say. It’s kind of a taboo topic.”

Meghan R. (diagnosed 2016)

“My symptoms started as abdominal pain,” Meghan, another woman with endometriosis, shares. Right away she was told that her symptoms sounded related to endometriosis, but was sent to a gastrointestinal doctor to get rid of any stomach-related issues. “The whole time I kept saying, ‘This is endometriosis, this is endometriosis,’ and they kept telling me ‘No, it’s not.’”

“I went to a specialist, someone who specialized in endometriosis and, within 5 minutes of me being there, he said, ‘You have endometriosis; I 100% agree with you,’” Meghan explains.

When asked what was the biggest challenge she faced, she replied, “100% not being taken seriously and not being listened to. The pain interfered with my work, and I was not able to get out of bed some days.”

The first step in diagnosis is talking about your symptoms with your gynecologist.

Be specific when describing your symptoms to your gynecologist. Describe exactly what type of pain you’re experiencing and when. This can lead to better understanding of your unique situation, which is helpful in creating a treatment plan.

With resources found around the site, find out how you can speak out and SpeakENDO.