I didn’t know I had endometriosis, though I had most of the symptoms

I was compensated by Med-IQ through an educational grant from AbbVie Inc. to write about the realities of endometriosis as a chronic disease. All opinions are my own.

It’s been three years since I had a hysterectomy, in which I had my uterus, one ovary and cervix removed. It was the best decision for me and my health and I have never regretted it. (And I sure don’t miss my period!)

After my surgery, I learned I had stage four endometriosis and that it was not only covering my reproductive organs and had spread to my colon as well.

About 6% to 10% of reproductive-aged women have endometriosis, or 13 million women, and it can affect up to 40% of women with infertility.

Symptoms of endometriosis

Some presenting symptoms include:

• Painful periods, including missed school and work
• Painful intercourse
• Pelvic pain
• Bladder pain
• Bowel pain
• Subfertility
• Preeclampsia
• Preterm birth

I had almost all of these, but was still shocked to learn my diagnosis.

Research has shown that it can take an average of 5 to 9 years for diagnosis, and can be even further delayed for black and brown women. Endometriosis is often overlooked among those who are already marginalized in our society; specifically, socioeconomic status and race/ethnicity are key factors that affect access to healthcare and diagnosis of endometriosis.

A doctor mentioned I might have endometriosis in my 20s, but after getting pregnant quickly and switching to midwifery care, the topic was never broached again. I reasoned that my painful and heavy periods were due to getting older and having multiple kids. I had preeclampsia with two of my three pregnancies, but endometriosis was never mentioned. Intercourse was also sometimes painful, but I don’t recall a doctor ever asking me about this. It wasn’t until my cycles got really brutal, in terms of both pain and heavy flow that I sought out a pelvic pain specialist who quickly identified the endometriosis and recommended the hysterectomy.

Interestingly, in my family, my mother and her mother both had hysterectomies at the same age as I did — 36. Endometriosis runs in a family and painful periods can often be normalized. Women think their painful, heavy, awful periods and other pelvic pain experiences are normal because the women around them complain of the same thing.

I’ll never forget when my pelvic pain surgeon said your period shouldn’t be painful. This is a truth so many women need to hear. If you suffer from pelvic pain, click here to find a doctor near you: I’m hoping that by partnering with Med-IQ, sharing my story and these symptoms will help more women recognize if endometriosis might be affecting them.

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