What To Know About Life With Endometriosis

When you hear the words “uterus,” “fallopian tubes,” and “ovaries,” you may naturally think “baby.” But for some people — like Amy Schumer, Padma Lakshi, and my own wife, Dinushka — those words are associated with pain. They are among millions of folks who suffer from endometriosis. Endometriosis is a disease that does not go away, and its symptoms can arise seemingly out of the blue, as they did on a recent vacation with my wife. On our long car ride, as we crossed state lines, she explained how uncomfortable she was.

I brushed it off as simply symptoms from having her period — they’d always been unpleasant and painful for her. But on that trip, my wife ended up in the emergency room with an IV filled with morphine, and instructions to follow up with her gynecologist when she returned home. That was the last time (but not the first) that my wife would go into the ER to deal with symptoms from endometriosis. Living with endometriosis sucks for everyone, partners and spouses alike, but especially for people suffering from this painful disease.

It can take years of dealing with symptoms of endometriosis before confirming a diagnosis. Vanessa, a mom of teenage girls, shared with Scary Mommy, “My risk for reproductive cancer is high because of my history of endometriosis. This scares me for my future, my daughters ‘future.'” For Vanessa, it took 25 years of dealing with symptoms from endometriosis before having a full hysterectomy in 2017 at the age of 42.

An article put out by endometriosis.org took a deep dive into a study conducted by the Nurses Health Study. The study, conducted between 1989 and 1999, followed 1,721 women’s reproductive health. The study found that “compared to white women, Black women were ~40% less likely to be diagnosed with endometriosis. However, they saw similar rates of endometriosis in Hispanic and Asian women, compared to white women, albeit the number of women in these racial/ethnic minorities was small in the group.”

In a more recent study conducted in 2020, researchers found that “compared with white women, Black women were ~50% less likely to be diagnosed with endometriosis, whereas Asian women were ~60% more likely to have this diagnosis. Hispanic women were also ~50% less likely to be diagnosed with endometriosis, compared to white women.” While science gives us some clue as to who gets endometriosis at higher rates, the disease has no color lines.

The World Health Organization estimates that globally, over 190 million people of reproductive age are diagnosed with endometriosis. It is a disease that causes pain and can cause infertility. When a person has endometriosis, the tissue that lines the inside of the uterus also grows outside of the uterus and can attach to other organs.

Symptoms from endometriosis can occur before, during, and after one’s period. Shamindra, a South Asian woman from Sri Lanka, was diagnosed at the age of 18. She shares with Scary Mommy, “Endometriosis impacted my life in a way that I never imagined; it drew me into a great depression. I used to bleed heavily for 10-11 days for a month with severe diarrhea. Had severe back pain as the tissues were growing in my rectal area up the spinal cord.” She goes on to say, “Endometriosis is not completely curable, as everyone who has it knows — you need a good support system as you have more bad days than good and you need some extra helping hands when you go through those tough days.”

The symptoms associated with endometriosis, described in a Johns Hopkins report, are:

• Pain, especially excessive menstrual cramps that may be felt in the abdomen or lower back
• Pain during intercourse
• Abnormal or heavy menstrual flow
• Infertility
• Painful urination during menstrual periods
• Painful bowel movements during menstrual periods
• Other gastrointestinal problems, such as diarrhea, constipation, and/or nausea

Renee, mom of a five-year-old daughter, has suffered from symptoms of endometriosis for 15 years. For her, it’s about managing her symptoms. She shares with Scary Mommy, “I manage my endometriosis through diet and working out and acupuncture and mental health practices like mediation. I have to be mindful of the stress and food that I put in my body. It also affects my moods and physically as well. Sometimes it takes me out for a few days. It really affects my adrenal and causes extreme fatigue.”

Recently, Amy Schumer shared that she’d had both her uterus and appendix removed because of endometriosis. Often known for giving us laughs, in her two-part video post, she shares her experience immediately after surgery. In her Instagram post, shot by her husband Chris Fischer, she got folks talking about the disease again. She reignited in many the urge to step forward and activated a call to action from all of us.

With 1 in 10 women diagnosed with the disease a year, there are many people like Caitlyn who credit Amy Schumer’s viral IG post as to why she chose to share her experience living with endometriosis. What I hope folks are hearing, not only on IG TV, but in their moms’ groups, from their friends, and from their doctors, is that you are not alone — that people all over the world are diagnosed with this disease.

Amy’s video now has over 1 million views, over 5,000 comments, and a clear message: “You don’t have to live with it,” she says. Ultimately, you have choices when it comes to how to deal with your endometriosis. Sadly, the cause of endometriosis is unknown.

For people who have endometriosis and want to get pregnant, surgery is an option to help remove endometriosis from around the ovaries and fallopian tubes to help increase the chance of conceiving. My wife, who will never be pregnant, decided to go the medication route. Her doctor prescribed a birth control pill for daily use which is supposed to reduce the growth of the endometrial lining and stop the production of estrogen. When the pain gets unbearable, Dinushka takes a cocktail of Tramadol, medication akin to taking an opioid, and Voltaren to dull the pain. For now, this is what she’s decided to do. For some, like Amy, getting a hysterectomy was what she needed to do to deal with her pain.

If you’re suffering from endometriosis, join Amy and others using #myendostory to share your story with others. For more information on treatment, research, and to get involved, visit Endometriosis Foundation of America.