1 in 10 Women: Endometriosis
If you have actually heard about endometriosis then you are already more informed than most about this devastating condition that affects roughly 10% of reproductive-age females. This means approximately 200 hundred million women’s lives around the world are impacted by this potentially disabling condition. According to the Endometriosis Foundation of America, “Endometriosis occurs when tissue similar to the lining of the uterus (the endometrium) migrates outside of the womb, where tissue should not be.” This results in inflammation, which produces pain and sometimes infertility.
I want to focus more on what endometriosis is not, as opposed to what it is. This approach brings about a more interesting discussion by revealing the immense opportunity we have as health practitioners (and as a society) to intervene early, potentially affecting the trajectory of a young person’s life.
To start, let’s talk myths. The two most prevalent myths are:
- Endometriosis only affects people who are in their 20’s and older – in other words,” she’s too young to have this”
- Endometriosis is just “bad cramps” – in other words, “she over exaggerates the extent of the pain.”
In reality, endometriosis can occur in young people as soon as they begin getting their periods and sometimes before. Endometriosis symptoms are much more than just cramping; the symptoms are often severe enough to interfere with normal activities such as work, attending school, or engaging in everyday activities. The pain can be incapacitating, sometimes described as gnawing, throbbing, or stabbing pain. On top of that, medication often does not relieve the pain.
I had a recent patient say that when she has her period, she wants to “claw out her uterus.” I’ve had others state that it feels like someone is stabbing the inside of her vagina with a hot knife. These are just a few descriptions. These patients are not exaggerating, in fact they are experiencing a level of pain that would drive most of us to the emergency room.
Why does this matter? If we know that a person can’t be too young to have endometriosis and, instead, validate their pain – ultimately, allowing ourselves to be curious about the source of their pain – we can create the opportunity for early intervention. These individuals can be appropriately diagnosed and find ways to manage their pain. The fact is that, oftentimes, it can take up to ten years to get a correct diagnosis for most patients with endometriosis. In the meantime, some women may have had multiple inappropriate surgeries, experienced humiliating dismissals of their pain, and labeled “drug seekers” and melodramatic. So, if you have people with periods in your life that you love and care for, be on the alert for symptoms of endometriosis. If they do have symptoms, arrange to have them carefully and thoroughly evaluated by a physician with experience. You may be able to prevent a lifetime of suffering.
Other facts are that endometriosis can be found in menopausal women and even men, although very rare. Although usually found in the pelvis, it can be found anywhere in the body, including the brain and lungs. The disease has even been documented in fetuses and has been found in young people born without a uterus. In short, endometriosis is a beast of a disease! Let’s keep our eyes out for it!
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About the author
Dr. Eric Heegaard is a gynecologic surgeon whose surgical practice has been at the forefront of minimally invasive gynecology for over two decades. Dr. Heegaard’s interest in treating endometriosis and pelvic pain started in his work with infertility care and treatment. He works with patients to devise a customized management plan. The plan may include surgery but often involves working with pelvic floor therapists, integrative medicine practitioners, and other medical and surgical specialties.
