It Took 15 Years and Dozens of Doctors to Find the Cause of My Pain

As told to Nicole Pajer

My periods were painful right from the beginning. When I was a teenager, my mom used to let me skip one day of school every month because the pain was so bad. But when you’re young, you don’t really know how your period compares to anyone else’s. You only know what you experience. So when people said, “Oh, it’s just your period,” I believed them. Every 28 days, the pain would come, and I learned to compartmentalize it. I told myself, I just had to get through it.

The really intense pain started after I had my appendix removed when I was 17 weeks pregnant with my first son, Eddie. I also had a difficult C-section when he was born. About a year later, I started telling doctors that something was wrong with my stomach. I couldn’t stretch it. I couldn’t do a cobra pose or lean backward without feeling like my stomach was being pulled apart.

Doctors thought it might be a complication from my appendix surgery. An MRI showed a surgical clip in my abdomen and tissue connecting my uterus, bladder and abdominal wall. I had laparoscopic surgery to investigate, but afterward the doctor told me the MRI had been wrong. Nothing was wrong with me.

Except I knew something was.

I kept going to doctors. Many told me I should have my gallbladder removed. That didn’t make sense to me, so I didn’t do it. Meanwhile, I was living with terrible IBS-like symptoms, bloating and excruciating pain. About two years ago, things got so bad that I ended up in the hospital. My joints were swollen and I felt like my body was shutting down. I went through test after test and saw specialist after specialist, but I still didn’t have an explanation that accounted for everything I was experiencing. This went on for 15 years.

The fertility piece of my life was complicated too. Getting pregnant with Eddie had been easy. We decided we wanted a baby, tried once and I was pregnant. Trying for our second child was completely different. It took four years, and during that time, I had a miscarriage. The emotional pain of losing a pregnancy while already dealing with unexplained infertility was incredibly difficult. I had a natural miscarriage before I could schedule a procedure, and going through that at home by myself was scary and intense. Three months later, I became pregnant with my son Max.

Years later, I had a second miscarriage. That one sent me into an extremely deep depression because we were done having kids but it awoke a new desire to try to have another baby. Strangely, the physical pain of the miscarriage wasn’t particularly bad compared with the pain I was already accustomed to living with. The mental toll, however, was enormous and completely debilitating.

About a year later, when I was 43, my husband and I decided to explore in vitro fertilization (IVF) to see whether having another baby might still be possible. That decision ultimately led me to an answer I’d been searching for for years.

During the IVF process, my doctor spotted a cyst on one of my ovaries and told me I needed to get it checked out regardless of what happened with IVF. The IVF didn’t work out, so I went to an OB-GYN to investigate the cyst. An ultrasound appeared to show what’s sometimes called a “chocolate cyst,” or endometrioma, a type of ovarian cyst associated with endometriosis. My doctor said I wasn’t understanding the ultrasound report correctly so I went to get a second opinion.

But I still couldn’t get a clear answer. I kept saying, “I have a lot of pain. Pain with intercourse, pain with everything.” I was told it was fine and that I could go on birth control.

Finally, I sought another opinion. By that point, I was adamant: I have so much pain. This can’t be normal.

This doctor listened.

She performed laparoscopic surgery to see what was actually happening inside my body. She removed three cysts, including a large endometrioma, and even found the surgical clip that had shown up on the MRI years earlier. She also found severe endometriosis and adenomyosis.

The endometriosis was extensive. My organs weren’t sitting where they were supposed to be. One of my ovaries was fused to a fallopian tube, which was bent backward and fused to my colon. Both ovaries were behind my uterus. There were lesions involving my bowel and bladder.

After 15 years of doctors telling me nothing was wrong, I finally had proof that something was. I was so grateful my doctor took pictures during the surgery. I told my husband that without those pictures, I don’t know if I would have believed the diagnosis myself.

That’s what years of being dismissed can do to you.

When you live with pain for that long, it changes you. Compartmentalizing became my superpower. After the C-section with my second son, I walked out of the hospital after 24 hours thinking, I can do it all. For years, I thought being able to push through anything was a strength. Now I’m not sure it always was.

I’m still processing what my diagnosis means for my future. I’m preparing for another surgery that’s expected to include a hysterectomy and more extensive removal of the endometriosis. A year ago, I was sitting in an IVF office wondering whether I could have another baby. Now, I’m preparing to have my reproductive organs removed.

Every time a doctor asks, “Are you sure you’re done having kids?” I have to say yes — not necessarily because I want to be done but because I now understand how complicated another pregnancy could be for me.

I’m nervous about the surgery but what scares me most isn’t the procedure itself. This will be my sixth abdominal surgery. What scares me is going through all of it and still living with the pain. At the same time, for the first time in years, I can imagine a different version of my life — one where debilitating pain isn’t something I automatically compartmentalize and push through.

Since sharing my story online, I’ve heard from hundreds of women who’ve told me that they finally feel heard or that my experience reminded them they’re allowed to get another opinion. That’s why I keep talking about it.

If you feel like something is seriously wrong with your body, keep looking for answers. Find another clinician. Ask more questions. Talk to other women. Keep going until you find someone who takes you seriously. After everything I’ve been through, that’s the biggest lesson I’ve learned: Share your story, advocate for yourself and don’t take no for an answer when you intuitively feel like something is wrong.

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