According to the Endometriosis Foundation of America, 176 million women have endometriosis, with one in 10 suffering in the United States alone - but innumerable impacted women leave their doctors' offices undiagnosed each day.
This article will arm you with the background and insight you need to recognize signs of endometriosis in your own body, empowering you to ask the right questions, seek the right treatment, and jump on the (often very effective) road to recovery.
Endometriosis occurs when the tissue that normally lines the uterus - endometrium - appears elsewhere. With no means of escaping the body, this displaced tissue finds itself trapped, causing pain, fatigue, and other symptoms.
It’s worth noting, however, that endometriosis can impact women in wildly different ways, so pinning down a single definition is tricky (hence some of the confusion over diagnoses and symptoms).
Endometriosis typically takes place in the pelvic cavity, including reproductive organs, but occasionally spreads elsewhere. It's most common in the ovaries, where cysts, or endometriomas, may develop; this causes irritation in surrounding tissue, leading to adhesions and scar tissue, as well as bands of fibrous tissues that can fuse your organs and pelvic tissues together.
Basically, endometriosis occurs when uterine tissue gets trapped outside the uterus, resulting in pain and other complications among some affected women.
Despite some misconceptions about age of onset, any woman is at risk for the disease. It typically occurs a few years after the onset of menstruation, but can appear as early as a girl's first period.
Although any woman who menstruates can be diagnosed with endometriosis, there are certain risk factors that researchers have identified in relation to the disease, including:
Researchers are as yet unclear as to the exact reason behind this disease, but there a few popular theories.
Some studies show a genetic component, with a strong link between family history and presence of the disease, and limited research has investigated the relationship between endometriosis and the immune system. Unfortunately, these theories are just that - theories - so it's virtually impossible for women to seek preventative care against the disease. But fortunately, researchers have identified common symptoms, and there are numerous treatments proven to combat it once diagnosed.
Symptoms are many and broad, but the most commonly reported effect of endometriosis is severe pelvic pain, usually in conjunction with the menstrual cycle itself. Cramping from the disease feels similar to typical period cramps, but women with endometriosis often describe it as far more painful and increasing over time.
Other common signs can include:
The most common severe complication is an impact on fertility.
According to the Mayo Clinic, one-third to one-half of diagnosed women struggle to get pregnant. Endometriosis is believed to obstruct the fallopian tubes, preventing the egg and sperm from interacting; it's also been known to directly damage the egg or sperm.
Many women with endometriosis still manage to conceive and carry to term, but it's recommended that diagnosed women seeking to become pregnant try doing so early, as endometriosis may worsen with age.
Some studies suggest that endometriosis is also connected with ovarian cancer. This increased risk is relatively low, and given the already low rate of ovarian cancer, not a major cause of concern for women with the disease. According to the Mayo Clinic, endometriosis-associated adenocarcinoma may affect women later in life.
If you notice any of the above listed symptoms, particularly severe pelvic pain, it's worth a visit with your doctor.
Unfortunately, endometriosis is often misdiagnosed as ovarian cysts, pelvic inflammatory disease, or even irritable bowel syndrome (the latter often occurs alongside endometriosis).
This breadth of symptoms, along with the fact that some affect women report little to no pain, makes a diagnosis rather tricky.
According to EFA, it takes an average of 10 years from the symptom onset for women to get an official diagnosis in the United States, largely "due to a lack of knowledge among the general public and medical community. Unfortunately, many endometriosis patients are misdiagnosed, often multiple times, leading to unnecessary and inappropriate treatment."
If you're concerned, especially if you're worried about your fertility, there are a variety of ways to nail down a diagnosis. The only official way to verify the disease is a laparoscopy and pathology report, with a confirmation of biopsy specimens.
Lab testing cannot confirm the disease, so no amount of urine, blood, or saliva samples will be of use, and image testing (computed tomography or MRI) can be helpful, but cannot provide an official confirmation; these tests may, however, rule out or identify other diagnoses.
Once that diagnosis is officially made, there are a variety of viable treatment options. The most direct, but invasive, approach is deep-excision, which removes the entire legion, including tissue beneath the surface, from the body during laparoscopic excision surgery.
Conservative surgery doesn't work completely for every woman however, so some women pursue assistive reproductive technologies if they want to conceive following a middling or unsuccessful surgery.
Although a hysterectomy is not a "cure" for endometriosis, it is often the best form of treatment in particularly severe cases. The surgery removes the entire uterus, cervix, and both ovaries, and is not effective without further treatment (remaining endometriosis often causes pain to persist following the hysterectomy), but again, can be a useful treatment for some women for whom pregnancy is not a concern.
The Mayo Clinic lists a variety of other treatments and symptom management options, from pain-relievers and diet changes to various hormone treatments. Ultimately, every woman's body - and by extension, response to endometriosis - is different, so a treatment plan needs to be an extended conversation between patient and doctor.
Despite the lack of widespread understanding about the disease, endometriosis is not the end of the world.
Whether you just had or first period or are bracing yourself for menopause, whether you hope to conceive or never want to be a parent, whether you don't know your genetic background or you have a list of family medical history taped to your fridge - your pain and concerns are perfectly valid, and if you do have endometriosis, the right treatment plan is out there.
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