For years, I believed that periods were supposed to be rough.
I had gone from one that lasted three to four days in my teens and young adult years to a period that lasted between seven and 10 days over the span of a few years. I didn’t give too much thought to it because so many women I knew talked about their heavy flow, their long periods, and their debilitating stay-in-bed cramps that I believed it was the norm.
It wasn’t until I attempted to get pregnant that I started to realized something wasn’t right. Not only did I go more than a year with no success in conceiving, but things became more painful. I had pain during sex, I had clotting that was alarming, and I had such bad cramping, it would shoot from my back down to my legs and keep me up at night. I did my research and came to the conclusion that I was dealing with fibroids, which after speaking with a doctor and and an MRI, I found I was. But when I went forward with a myomectomy to deal with my pain problem once and for all, I was told at my one-week follow-up appointment that not only did they take out multiple fibroids, but I’d also unknowingly been suffering with endometriosis. I was being tag-team assaulted in my uterus. The tissue was removed during my procedure and I wouldn’t have known it existed if I hadn’t advocated for myself about the fibroids. It left me wondering how many of us are dealing with a disorder like this and brushing off debilitating pain as common cramping?
Dr. Charlotte D. Owens, physician and Therapeutic Area Lead of Women’s Health for the pharmaceutical company AbbVie, says it’s that way of thinking, among other important factors, that keeps women from being able to get properly diagnosed for endometriosis.
“I think it is important to establish that cramps, bloating, and the feeling of general discomfort and perhaps some pain, may be associated with normal healthy periods. But, for those who experience moderate to severe pain during their period in addition to other issues, like periods that last more than seven days, or heavy menstrual bleeding, it is important to recognize that these are not associated with a normal, healthy period,” she says.
“That said, period pain, even when it is severe, is often still viewed as being ‘normal’ or ‘just part of being a woman’ by too many people,” she adds. “This normalization of pelvic pain can create an additional barrier for women when they try to get the support and care they need.”
What sets endometriosis apart from the “norm” per se is there are different kinds of pains associated with it. According to Dr. Owens, it includes pain with periods, pain in between periods and pain with sex, the latter of which I mentioned earlier.
“Other possible symptoms can include painful bowel movements and urination, bleeding or spotting between periods, feeling sick or vomiting during your period, and difficulty participating in day-to-day activities because of excessive pain, exhaustion, or weakness,” she says.
The end result can lead to missed days as well as lost work, school and family time. It can become a major burden and can happen to anyone. While Black women tend to be more heavily impacted by uterine fibroids according to studies, for endometriosis, there’s no particular demographic or ethnicity labeled to be more at risk. Nevertheless, one in 10 women end up with endometriosis in the U.S. So if you notice symptoms, keep in mind that risk factors include a family history of this reproductive health issue, starting your period at an early age, brief menstrual cycles as well as long and heavy periods.
But just because you might believe you have it doesn’t mean a diagnosis is as simple as hearing one’s symptoms and deciding endometriosis is indeed your burden. While physical examinations and visual inspections of areas where endometriotic lesions could be found can help you be diagnosed and treated, a more conclusive option just so happens to also be the most invasive.
“Traditionally, surgery with tissue biopsy confirmation has been the ‘definitive’ way of diagnosing endometriosis and still is today,” Dr. Owens says. “Overall, we have made a lot of advances in better understanding endometriosis and how it presents in women. We’ve also made advances in the ability to rule out other conditions that may cause similar symptoms, as well as development of more options for clinical diagnosis, which can be sufficient to start some treatment options.”
But just because the path to diagnosis and treatment may not be the easiest path doesn’t mean it’s not an important one to stay on. And to get the help you need, you have to be willing to advocate for yourself with your doctor (a common need for Black women, unfortunately), as well as come prepared with the insights necessary based on your experiences to not just be listened to but heard.
“First and foremost, speaking up about your symptoms in a detailed and open way can lead to a better conversation with your healthcare provider and help lead to a faster diagnosis that puts a name to the pain,” Dr. Owen says. “I also recommend keeping a diary. Write down your symptoms with detailed descriptions on when they occur. The details really matter when considering treatment and care planning. It’s also important to make sure that when you are discussing your symptoms with your healthcare provider, that you feel like they are really listening, and that they are engaging in the conversation with follow-up questions to learn more about your specific experiences and concerns.”
So have your dates, details of your symptoms, as well questions handy for your next appointment, that way you can partner with your healthcare provider to determine what’s behind your pain. Next steps could be an ultrasound to see what shows up or to send you to specialists who can be of help.
There is hope. There are also resources online for those who do have endometriosis to feel supported and to lessen stigmas associated with the disorder. AbbVie, whom Dr. Owens works with, teamed up with six other leading women’s health organizations (like the Black Women’s Health Imperative and the American College of Obstetricians and Gynecologists to name a few) to create the Alliance for Endometriosis as a resource.
“The Alliance for Endometriosis took its first step to directly combat this stigma by conducting an ongoing survey on their website, which I encourage endometriosis patients to take in order to share their experiences. The Alliance plans to use findings to create an action plan that they hope encourage more open and productive conversations that eliminate stigma and lead to faster diagnoses and improved treatment experiences,” she says.
“For individuals and endometriosis patients, it’s important to continue to speak up about the condition, to encourage positive, productive conversations that will help fight the stigma and empower them to live healthy,” she adds.
On the road to answers, these resources are also helpful to countless women who have yet to be officially diagnosed with endometriosis. The more you know, the more we can take charge of our reproductive health and stop assuming what we’re dealing with is an ordinary pain.