I have a family history of endometriosis and doctors still ignore me

As I said to Marnie Good Friend

March is Endometriosis Awareness Month.

As a teenager, I noticed that my periods were not normal. It hurt a lot, and I bled even with heavy tampons and frequent changes of super maxi pads. I asked the other cheerleading girls, “Are you really having a hard time this month?” Some people said it was painful, but for me it was so bad that I had to miss school or leave school early. One day, someone told me they saw blood on the back of my pants in front of everyone. I had no idea and was so embarrassed.

I also suffer from pelvic floor dysfunction, which I thought was pretty common at the time. My doctor prescribed what she called “old lady medicine” to stop my leaks. She never said, “I think there’s a problem here,” or referred me to physical therapy. As a cheerleader I was very active and lost control of my pelvic floor muscles. Every time I fell, I would literally pee my pants. The medication wasn’t working so I started bringing a change of shorts and that solved this problem.

Looking back, there were too many red flags that should not have been ignored. I told my doctor about heavy menstrual bleeding, nausea, stabbing pains, lower abdomen pain, and butt cheek cramps. They didn’t do anything except give me birth control pills. Plus, I didn’t get my period every month. One time, I didn’t have a period for eight months, and my doctor said, “Aren’t you glad you don’t have to have a period?”

My mom suspected I had endometriosis, which runs in families. Both my mother and grandmother suffered from this disease and had to have surgical excisions and hysterectomies after giving birth to their children. The mom told her obstetricians about her suspicions, but they dismissed her concerns. At first I thought, “These doctors know more than me,” but then I got frustrated and started fighting to find more answers.

My symptoms increased in college. The pain was unbearable. I remember one time I tried to get in the car and the cramps were so bad I couldn’t even sit down. Over the years, I have been on and off various types of birth control pills. Then I started giving it twice a month. In my third year, I decided to stop taking my medication, and my gynecologist shamed me for doing so. They referred me to a GI doctor, who did some tests and said, “You’re stressed about being in college. It’s just IBS (irritable bowel syndrome) and it will go away.”

But it didn’t go away, and there were many instances of me skipping classes and canceling my plans. Sometimes, I told myself I had to become strong like an athlete and overcome the pain. Before my cycle started, I was anxious at the thought of having to endure another period that I couldn’t handle. Sometimes I felt like I was going crazy even though several medical experts told me there was nothing wrong with me.

I became a personal trainer and started taking anti-inflammatory medications whenever possible to manage the pain. It wasn’t a long-term solution, but I had to go to work and be active. I spoke to one of my supervisors who is interested in women’s health about this and told her that I could no longer physically work during my cycle. She was very understanding, and the more we talked about this, the more I realized I needed to educate myself and get the help I desperately needed.

In November 2024, after contracting COVID-19, my symptoms worsened. I’m sure a lot of people would have gone to the emergency room, but I knew they couldn’t do anything for me. Another gynecologist looked at my chart and said, “I saw you refused birth control pills.” I told her I had read a book about endometriosis and thought I needed surgery. “If you ask me to have surgery, I can do it, but I don’t think it will help much, and I might not do it.” I wondered why my health care provider (HCP) was the one telling me how to care for myself. The visit shocked me.

2024

I took my endometriosis research seriously and learned that excisional surgery was the gold standard. In 2025, about 3 days before my menstrual cycle, I started bleeding from the rectum and got scared. After posting on Nancy’s Nook, a popular online endometriosis support group, I finally found a really good OB/GYN who specialized in the procedure. She was the first HCP who actually listened to me and made me feel comfortable. It was truly a godsend. I remember her saying to me, “You’ve been really struggling with this. I think it’s time for you to have surgery.”

I left my appointment with my mom and started crying. When she said, “What you’re going through is not normal,” I felt like a huge burden had been lifted. The same doctor performed my surgery and I was diagnosed with stage 2/borderline 3 endometriosis, mostly with adhesions in the rectum. I finally had surgery about six months ago, and although I’m still early in my recovery, I feel hopeful that I’m finally on the right path to healing.

I started sharing my experience on social media to raise awareness and remind other women that they are not alone and deserve to be heard. I often receive messages from women who are struggling with their symptoms, delayed diagnosis, or feeling dismissed, and I’m always honored to be a safe place for those conversations. Building trust and community is very important to me.

As a health coach with a degree in nutrition, I have a passion for health and wellness. I hope my visibility encourages people to trust their intuition and know that it’s okay to stand up for yourself, even if it means getting fired. If something doesn’t feel right, you may need to see a different health care provider. It may be tiring, but it’s worth it. Now that I’m on the other side of the situation, I’m living proof that it pays off.

Do you have a real woman, a real story of your own, that you’d like to share? please let us know.

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