Endometriosis 101: What It Is and What You Can Do About It
Endometriosis is a reproductive disorder affecting as many as ten percent of menstruators of reproductive age. It is a leading cause of infertility; 25 to 50% of women struggling with infertility may have endometriosis. But, despite its prevalence, it takes an average of 9 years—9 years!—for women to receive a correct diagnosis of endometriosis from the initial onset of symptoms.
But how many individuals with endometriosis-like symptoms don’t know what endometriosis is or that they may actually have it?
What is endometriosis?
In brief, endometriosis occurs when the tissue that lines the uterus each month in preparation for conception and pregnancy, grows outside the uterus instead of inside of it.
This is a problem because, when endometrial tissue grows in the uterus where it is meant to, it sheds and leaves the body every month through menstruation. Tissue grown outside of the uterus has nowhere to go, and so, over time, this tissue hardens and forms adhesions known as endometrioma or “chocolate cysts” (the color resembling dark chocolate).
In most cases, endometrioma lesions develop on the exterior of the uterus and fallopian tubes. But, they can also grow on other internal organs in the pelvic cavity like the bowel and rectum. In rare instances, endometrioma can even be found in other parts of the body such as the lungs.
Symptoms of endometriosis
The most common symptom of endometriosis is pelvic pain. Of course, pelvic pain varies from pelvis to pelvis. Pelvic pain from endometriosis typically occurs during menstruation, although some menstruators experience it throughout the cycle. Debilitating cramps during menstrual bleeding is a common symptom of endometriosis, as is extra sharp pain anywhere in the pelvic cavity, known as vulvovaginal pain. Pain during sex is also a common symptom.
Other symptoms include:
- Heavy periods and long periods lasting more than seven days
- Digestive issues including IBS-like symptoms and bloating. In one study, 36% of women with IBS were also found to have endometriosis.
- Bladder pain and interstitial cystitis
Infertility is another common symptom of infertility, and often a primary concern of women with endometriosis and endometriosis-like symptoms. While infertility is certainly associated with endometriosis, not all endometriosis sufferers are infertile. 25 to 50% of infertile women have endometriosis, and 30 to 50% of women with endometriosis are infertile, according to one study. Other studies, such as this one, cite the same statistic that up to 50% of women with endometriosis are infertile.
It is important to remember that endometriosis is a complex condition. 20-25% of women with endometriosis are completely asymptomatic.
It’s also important to note that the symptoms listed above may indicate endometriosis, but they may also be unrelated to endometriosis, and can occur separately from endometriosis. This is part of the reason that endometriosis can be difficult to diagnose.
Plainly said, endometriosis is poorly understood and difficult to diagnose. Because pelvic pain is a predominant symptom of endometriosis, up to 60% of women being evaluated for pelvic pain receive a diagnosis of endometriosis. However, there are other causes of pelvic pain besides endometriosis, and a diagnosis based on pelvic pain alone, or in combination with other symptoms, may not be accurate.
For help transitioning off hormonal birth control to manage endometriosis holistically, click here.
Header photo: Pete Bellis via Unsplash