Awareness of endometriosis — a potentially debilitating, often enigmatic condition that affects 1 in 10 women worldwide, according to Endometriosis.org — may be growing, but it’s still a misunderstood disease. Many think its symptoms are limited to painful intercourse and heavy periods, but the reality is that endometriosis can affect everyday life in ways far removed from the pelvic region from which it originates.
“One thing you often hear from endometriosis suffers,” says Hazel, 35, “is ‘if it’s not one thing, it’s another.'”
Hazel suffers from chronic pelvic pain and feels this has taken its toll on her mental health as well as physical health, which is no surprise when people with endometriosis have higher comorbidities with other conditions — both gynecological and non-gynecological — according to a November 2017 study published in Obstetrics & Gynecology Science.
From allergies and migraines to anxiety and chronic fatigue syndrome, here are six ways endometriosis can affect your mind and your body.
A version of this article was originally published in July 2018.
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Endometriosis & the Body: Chronic Fatigue
There’s feeling tired, and then there’s chronic fatigue syndrome.
This kind of tiredness cannot always be resolved through adequate sleep, and it can have a big impact on a sufferer’s ability to lead a normal life. An October 2002 study published in Human Reproduction indicates high rates of chronic fatigue among women with endometriosis.
Rachel, 30, has endometriosis. She also suffers from severe fatigue.
“Some days I just can’t get out of bed,” she says.
Her doctors have said her fatigue is likely caused by the constant pain she suffers from endometriosis.
“Even a bit of housework is exhausting,” she says. “I can’t find work at the moment — I would be an unreliable employee with the pain and fatigue.”
Endometriosis & the Body: Allergies
Responses to allergens range in severity from an annoying runny nose and itchy hives to potentially life-threatening anaphylaxis. An April 2012 study published in the Journal of Obstetrics and Gynaecology found a high rate of allergies among patients with endometriosis.
Lizzy was officially diagnosed with endometriosis last year, though her symptoms first appeared when she was 14. Around the same time, she was diagnosed with a number of other conditions, including hypogammaglobulinemia (an immunodeficiency disease) and multiple allergies.
“Paraphenylenediamine or PPD, an ingredient in many hair dyes, can cause intense sneezing, then itchy hives, followed by swelling and difficulty breathing,” she says. “Hair dye can cause me to experience instant anaphylaxis.”
Lizzy has observed that her allergies are easier to control when her endometriosis is not flaring up.
Endometriosis & the Mind: Migraines
A migraine is more than “just a headache,” says U.K. research and education organization Migraine Trust. While sufferers do experience head pain, they also complain of a variety of other symptoms, including light sensitivity, distorted vision, nausea and sensory auras. These can prevent migraine sufferers from engaging in everyday activities.
Endometriosis and migraines share a number of symptoms and risk factors, including an early menarche and female hormones — but a March 2012 study published in peer-reviewed journal PLOS One indicates that women suffering from endometriosis are 1.7 times more likely to suffer from migraines than those without the disease.
Lexi, 28, has suffered from endometriosis for 12 years and has had three laparoscopic excision surgeries so far.
“Following excision,” she says, “I almost immediately notice a reduction in the number and severity of my migraines. My migraine symptoms often coincide with an endometriosis flare-up.”
Her neurologist thinks her conditions could have comorbidity.
Endometriosis & the Body: Fibromyalgia
Fibromyalgia is a chronic condition that causes widespread pain. Like endometriosis, it is still poorly understood; but unlike endometriosis, there is no one specific test for diagnosing it, according to a July 2017 study published in Revista Brasileira de Reumatologia.
Both fibromyalgia and endometriosis are characterized by pain; that’s why women with both conditions often find it hard to get a diagnosis. An October 2002 study published in Human Reproduction revealed that fibromyalgia is nearly twice as common in women with endometriosis than in those without it.
Gillian, 43, was in her early 20s when her endometriosis pain first started. This year, she was also diagnosed with fibromyalgia, meaning she feels pain throughout her entire body.
“I would also like to lose weight, but exercise is very painful,” she says. “We know [in the endometriosis community] that endometriosis has a connection with fibromyalgia, but I had always put all my pain down to endometriosis. I took my symptoms to my GP, and she immediately thought of fibromyalgia. I had all the tests to rule out everything else as there is no real test to diagnose it.”
Endometriosis & the Body: Autoimmune Conditions
Endometriosis is not officially categorized as an autoimmune condition. However, there is research, including a large study published in the peer-reviewed journal Human Reproductionin October 2002, suggesting that there is a higher prevalence of autoimmune inflammatory diseases, such as Hashimoto’s and lupus in women with endometriosis when compared to the general U.S. female population.
Aga, 28, suffers from stage 3 endometriosis and Hashimoto’s disease, an autoimmune condition in which the immune system attacks the thyroid.
“Chronic fatigue, anxiety and all that come as side effects of Hashimoto’s,” she says. “I need constant medication to feel normal.”
Endometriosis & the Mind: Anxiety & Depression
A study published in the International Journal of Women’s Health in May 2017 found that women with endometriosis are at a greater risk of developing psychological conditions, such as anxiety and depression. It’s easy to see why: The pain associated with endometriosis can reduce quality of life, leading to situational anxiety and depression, while anxiety can increase sensitivity to pain.
According to endometriosis excision surgeon, Nicholas Fogelson, “Women with endometriosis see on average six physicians before they are diagnosed. That’s six different doctors that either didn’t figure it out or, in some cases, didn’t believe their symptoms were real. That’s a real problem and has more impact than just untreated pain. Many women suffer depression from chronic pain that is not only unaddressed but also unacknowledged.”
“Having chronic pelvic pain for three years has caused me to feel depressed and anxious because I feel like I’ve lost part of my identity,” says Hazel, 35. “I am no longer the energetic and sociable person I once was. Exercise exacerbates my pain, and I don’t socialize very often. I get anxious because my pain is often unpredictable, and I worry about work absences and losing my job. I also worry people will get fed up with me as I’m always canceling plans.”
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