April is Ademomyosis Awareness Month

My entire life, starting at age 11, I’ve had uterine pain. It was often dismissed by doctors, especially my pediatrician (a man), as something I would “grow out of.” Birth control pills in my 20s helped at least make my periods regular, but the pain never went away.

In 2017, I almost passed out from uterine pain at work. I was teaching and had to get myself to the school nurse. We were hosting field day for the kids as specialists, and I thought it was from being out in the sun, even though it was a very comfortable day.

After many doctor visits, I was told I had a fibroid. Only the size of a golf ball, they said.

The plan was a hysteroscopy. I would be put under, they would go in, fill my uterus with fluid, and remove the fibroid since it was supposedly in the uterine cavity. When I came to, my mom explained they didn’t get it. It wasn’t in the cavity, it was in the muscle. My mom told me the doctor was very upset she couldn’t help me. More tests followed.

At 34, I was told I was “too young” for a hysterectomy. Instead, I would need a myomectomy for my grapefruit-sized fibroid. Even though I didn’t want kids, they still didn’t want to give me the hysterectomy. I should have fought for it.

Four months later, I had the myomectomy. I was out of work for six weeks. The recovery was painful for a few weeks, then I was okay. But the pain continued. I was also told there was a 75% chance the fibroids would return, which left me in constant fear.

A couple years later, a doctor in Florida, a woman, decided I should not be on birth control pills. She outright refused to prescribe them. I started crying and hyperventilating in her office. She walked out and left me there for a while before sending a nurse in to calm me down. I was basically told I should be on an IUD. The procedure was very painful and made me realize I had made the wrong choice. I should have changed doctors. I should have complained about her. Living there was also a terrible experience for me. My workplace was toxic, the medical care I received was clearly subpar, and the food was mediocre.

When I moved back to Massachusetts, I returned to my previous doctor, who thought the Florida situation was ridiculous and put me back on the pill. I felt normal again, but the pain remained. Throughout my life, the pain could be debilitating. I remember being in high school with my head down on my desk, arms wrapped around myself, waiting for it to pass.

Then it happened again, and I knew something was very wrong. More tests followed, and this time they found polyps. This time, I said I wanted the hysterectomy. The doctor agreed and referred me to a surgeon.

Several months later, it was done. On April 6, 2023, with my mom by my side, I had the surgery. That morning, while putting on the hospital gown, I got my period. I remember thinking I was about to have the last laugh.

I have zero regrets. No more pain. No more periods. It is also 100% effective birth control. I was not married at the time, but I already knew I did not want kids. Thirteen years of teaching elementary music made me realize that was not for me.

Recovery took time, but I had support. My mom stayed with me for two weeks. Then I flew to Colorado and stayed with my parents for another two weeks. I could not lift anything. I was on medical leave. I walked, listened to audiobooks, and spent time with them.

Not long after my surgery, I got a call from the surgeon. The lab determined I had adenomyosis, which is the sister condition to endometriosis. With endometriosis, the tissue grows outside of the uterus. With adenomyosis, it grows inside the uterine muscle, causing labor-like pain, painful periods, and other symptoms. There is no simple test for it, and it is often only confirmed through surgery.

Finally, I had an answer. I believe I have had this my whole life, not just in adulthood. It made everything make sense.

I want people to know this exists. So many people are aware of endometriosis, but not adenomyosis.

If you are in pain and have been for a while, it is not normal. Do not let any doctor, man or woman, tell you that it is. Find a doctor who will listen to you. The path to being pain free may not be easy. There will be tests and surgeries along the way, but for me, being pain free at the end was worth all of it.

I have no regrets, and I hope sharing this helps more people become aware of this condition. If you have questions or want to talk about it, reach out. 💜