“How I Knew I Had Endometriosis”: One Woman’s Years-Long Journey to a Diagnosis

Endometriosis affects up to 10% of women of reproductive age—more than 170 million women globally. This conditions occurs when tissue similar to the uterine lining grows outside the uterus, causing inflammation, scarring, extreme bleeding, exhaustion, bloating, and often severe pain. It also can take an average of almost seven years to properly diagnose, with delays ranging from six months to 27 years depending on the country and healthcare system, according to 2024 research published in the peer-reviewed journal Health Care For Women International.

The consequences can be pervasive, even leading to infertility if untreated. Between 24% and 50% of women with infertility have endometriosis, according to research estimates from the American Society for Reproductive Medicine.

Despite being one of the most common gynecological conditions, endometriosis continues to be difficult for healthcare providers to diagnose. According to Mount Sinai Hospital, one of the main reasons for this is that symptoms “may overlap with gastrointestinal and genitourinary symptoms, which may make it harder to diagnose.” Additionally, endometriosis may not appear on standard imaging such as an ultrasound or MRI.

But another reason is that many women face unsatisfactory responses from medical professionals when they report severe period pain, often being told that their symptoms are “normal periods” or are attributed to other conditions.

Ahead, Madeline Ryan, an 18-year-old from Denver, Colorado, details the painful endometriosis symptoms she experienced long before she was officially diagnosed. Her story illustrates how persistent symptoms deserve further investigation—and why self-advocacy can lead to life-changing answers.

How I Knew I Had Endometriosis 

By Madeline Ryan, as told to Charlotte Hilton Andersen, MS

My painful endometriosis symptoms

I got my first period when I was 12 years old and right away I began to notice that something was wrong. During my annual checkup, I mentioned to my family how much the abdominal exam hurt when the doctor pushed on my abdomen to check my organs. I told them it felt like swords piercing through me, and I couldn’t breathe through it. I honestly thought everyone felt this way and just dealt with it. Plus, I’m a competitive dancer, so I’m used to pushing through pain.

My family quickly told me that that level of pain wasn’t universal at all. That conversation opened the door to more questions: Was it normal to bleed through both a pad and tampon in an hour? Did other people experience cramps so severe they couldn’t walk?

At the beginning, I mainly felt confused. Then I started to get upset. I started realizing that the women around me had a lot more energy than I did, and I was envious of their freedom. They didn’t seem to be dealing with constant pain or heavy bleeding the way I was. It turned out my experience wasn’t normal after all.

The long road to diagnosis

Despite being very vocal about my symptoms, it took me four years, four specialists, two primary care physicians, and laparoscopic surgery to finally get diagnosed—and I had to practically fight every step of the way to get the doctors to listen to me.

My symptoms only got worse while I was waiting for answers. The pain during my periods was crippling, and the constant exhaustion made it hard to participate in all the normal and fun teenage activities, including the dancing that I love so much. I was only 16! I should have been worried about the SAT and prom, not constant medical issues. I needed to find out what was wrong. But with endometriosis, that is easier said than done.

Laparoscopy—a minimally invasive surgical procedure where a doctor inserts a tiny camera into the abdomen to look for evidence of endometrial tissue growing outside the uterus—is the gold standard for definitively diagnosing endometriosis. But at first none of my doctors would consider it because I was so young. They assumed it couldn’t be that bad. But it was. After countless nights of crying to my mom and begging for help, I finally asked her to call the surgeon and schedule the surgery. I knew that was what I needed to get answers.

The day of the surgery I was nervous. But it was worth it because as soon as I regained consciousness, I had my answer. They told me I have stage 4 endometriosis. Stage 4 endo is the most severe form of the condition. It means that my endometrial tissue had burrowed deeply into other organs, I had large ovarian cysts, and these all had caused lots of scar tissue to form between my internal organs. This stage is known to cause severe pain, infertility, disability and other complications.

The surgeon came into my room afterward and apologized to me for pushing back on surgery for so long. She told me I had stage 4 endometriosis and said she had never seen so much blood and tissue in someone so young.

Many people would be upset at such a diagnosis, but I mostly just felt relieved to have an explanation. The diagnosis validated everything I’d been experiencing. Having an answer to explain my pain made me feel hopeful. I realized that if I hadn’t advocated for myself, I might still be searching for the cause today.

Life after diagnosis

There is no lasting cure for endometriosis, but doctors can offer treatments that help manage symptoms. Because of this, my doctors have focused on symptom management, including oral birth control, an IUD, and prescription medicine for pain flares.

I do worry about my ability to have kids one day. Endometriosis is one of the most common conditions linked to female infertility. Each professional I’ve seen tells me different statistics, but for now I’m focused on how much healthier I feel than I did two years ago. Not only do I feel better physically—I’m not in constant pain anymore and I have more energy to live my life—but I also feel better mentally. I’ve learned that I can, and should, trust myself.

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