Endometriosis affects about 10% of women in their reproductive age (typically, 15-49 years) across the globe. A painful, chronic condition that can cause inflammation-related scarring, endometriosis is genetic—meaning you are at a higher risk if your mother or sister(s) have endometriosis. However, patients live with undiagnosed endometriosis for an extended period despite painful symptoms.
What is Endometriosis?
Simply put, when tissue resembling the uterus lining grows outside the uterus, it develops scar tissue. Typical symptoms include:
- Painful periods
- Pelvic pain
- Pain during or after intercourse
- Painful urination and /or bowel movements
- Depression or anxiety
- Abdominal bloating and nausea
These symptoms may be relieved after menopause but could persist. Endometriosis could also affect a woman’s fertility. Despite the debilitating symptoms, patients often endure years of pain and discomfort before being diagnosed. The average time people can live with undiagnosed endometriosis could be between 6 and 11 years. This is partly due to the abdominal pain associated with endometriosis being mistaken for menstrual cramps.
Where Endometriosis Can Occur
The most common sites of endometriosis include:
- The ovaries
- The fallopian tubes
- Ligaments that support the uterus (uterosacral ligaments)
- The posterior cul-de-sac, i.e., the space between the uterus and rectum
- The anterior cul-de-sac, i.e., the space between the uterus and bladder
- The outer surface of the uterus
- The lining of the pelvic cavity
Occasionally, endometrial tissue is found in other places, such as:
- The intestines
- The rectum
- The bladder
- The vagina
- The cervix
- The vulva
- Abdominal surgery scars
it does not Affect Everyone Equally
There are mixed thoughts about this. Race has been identified as one of the factors that influence the risk of developing endometriosis. One study reviewed the findings of 20 studies and concluded that Black and Hispanic women were 50% less likely to be diagnosed with endometriosis compared to White women, while Asian women were 60% more likely to be diagnosed. The authors point out that symptoms may vary based on a woman’s ethnic background. Doctors need to be aware of this, and be culturally sensitive, when they evaluate women who present with these symptoms. They also hint at potential for underdiagnoses among Black women possibly as a result of implicit bias among healthcare providers.
- 11.1% of non-Hispanic White women
- 5.8% of non-Hispanic black women
- 2.7% of Hispanic women
- 6.4% of other racial groups
Interestingly, in comparison to non-Hispanic White women, non-Hispanic Black women were diagnosed at 2.6 years older and Hispanic women 3.8 years older. This could be a combination of lack of symptom awareness, symptoms being misclassified as “something else”, or healthcare discrimination. Anecdotal evidence also points to medical gaslighting.
Endometriosis may Increase Risk of Ovarian Cancer
While there is controversy over whether endometriosis and ovarian cancer are related, a recent study suggests they are. A team of Australian researchers compared the genetic make-up of 15,000 women with endometriosis and 25,000 with ovarian cancer. They found that those with genetic markers for higher risk of endometriosis have increased risk of developing epithelial ovarian cancer. That risk increased from 1 in 76 for any woman to 1 in 55 for someone who has endometriosis.
This Women’s History Month, make yourself the priority—attend to your physical and mental health and advocate for yourself. Take back your sense of agency in your own wellbeing.
Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience, who brings her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.