If you have a lot of pain that goes beyond your normal menstrual symptoms, and if it interferes with your life and prevents you from doing normal activities and functioning, you may have endometriosis.
Here, we’ll dive into the facts on this disease and learn why it’s a social justice issue that affects not just women and girls but all people worldwide.
What is endometriosis?
According to pelvic physical therapist Dr. Sallie Sarrel, “Endometriosis is a disorder in which tissues similar to, but not the same as, the lining of the uterus are found elsewhere in the body. These tissues can be found anywhere in the reproductive cavity, but also in the lungs, bowels, or other areas.”
Just how common is endometriosis?
Once thought of as a rare disorder, it’s now estimated that endometriosis affects roughly 190 million people worldwide – roughly 10% of women and girls between ages 13 and 52. And this is likely an underestimate, as the condition is often underdiagnosed and underreported.
What are the signs and symptoms of endometriosis?
Symptoms may show up differently based on where the disorder is present in the body.
For example, if it’s present in the bowel, endometriosis symptoms could include symptoms similar to irritable bowel syndrome (IBS), such as bloating, nausea, and painful bowel movements.
If it’s in the pelvic area, symptoms include painful cramping during periods, pelvic pain, or painful intercourse. This is especially insidious because as women and girls, we’re taught that pain during menstruation is normal and expected. As a result, we may not seek help right away. Or if we do, we’re told that it’s nothing to worry about – which brings us to the next point.
Delays in detection and diagnosis
Because women often don’t report concerns about pelvic pain or other symptoms – or their concerns aren’t taken seriously – it often takes a long time to detect and diagnose endometriosis: 7-10 years, on average.
Another reason for the delay is due to the type of diagnostic tools that are used. Pelvic exams and ultrasounds can be used to check for cysts and scars caused by the disorder, but the only definitive method is via laparoscopy – a “minimally invasive” surgery that involves inserting a long, slender tube into small cuts to check for and remove endometrial tissue.
Unfortunately, by the time the disorder progresses to this point and women haven’t received any answers, they may distrust their doctors and be wary of using surgery as a diagnostic tool. Laparoscopies can also create scarring, which would exacerbate the problem.
How do you manage and treat endometriosis?
There are several treatment options for endometriosis, including medications, hormone therapy and surgery. Medications include nonsteroidal anti-inflammatory drugs (NSAIDs) to relieve pain.
Because hormones affect the growth of endometrial tissue, they can be used to slow, shrink, or prevent tissue buildup. These include birth control pills, the vaginal ring, progestins (IUDs, implants), and GnRH agonists or antagonists. Surgery to treat endometriosis would include a hysterectomy or laparotomy.
Unfortunately, the hormonal treatments have systemic side effects that lead to other challenges. GnRH and hysterectomies both cause chemical or surgical menopause, which may lead to a host of other issues to address, like vaginal pain and dryness, sexual issues, and more.
Sadly, endometriosis is a chronic condition with no cure. Due to the pervasiveness of the disorder and its effects on the reproductive and pelvic areas, it often leads to infertility and other health issues like depression and anxiety.
Endometriosis as a social justice issue
Too many women and girls suffer in silence with endometriosis because they’ve been conditioned to accept pain. Or when they do seek help, their concerns are minimized or dismissed.
It’s time we bring endometriosis to the forefront and acknowledge it as the social injustice that it is. Women need to be taken seriously, and we need better treatment options that don’t have long-term systemic side effects.
If you have abnormal pain or unusual menstrual symptoms, please talk with your primary care provider or a reproductive endocrinologist. The earlier endometriosis is detected, the better.