Illustration: Emma Günther
Common endometriosis myths and misconceptions that need to be debunked
It’s not ‘just bad period pain’ and no, pregnancy doesn’t cure it.
Endometriosis is a complicated condition. People who have endometriosis often also experience delayed diagnoses, hit-and-miss treatments, and a general lack of awareness about the condition itself. Here are some answers to common questions and misconceptions about endometriosis.
Is endometriosis simply bad period pain?
No. Endometriosis is a condition in which endometrial-like tissue (similar to the lining inside the uterus or the endometrium) is found outside the uterus, where it may cause a chronic inflammatory reaction that can result in pain and scarring (1). Some people with endometriosis don’t have any symptoms, but many experience intense pain before, during, and after their periods (1). Endometriosis can cause dysmenorrhea, painful periods, dyspareunia, chronic pelvic pain, painful sex, dyschezia, painful bowel movements, and dysuria, painful urination (1).
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Is endometriosis rare?
No. Actually, it’s the opposite! Endometriosis is one of the most common female health conditions, affecting approximately 190 million people worldwide (1). About 1 in 10 women of reproductive age have endometriosis (2). But, it can be a difficult condition to diagnose early. This is because symptoms can vary greatly and often be missed or misdiagnosed, and confirming a diagnosis typically requires a surgical procedure (1). It’s estimated that 6 out of 10 people with endometriosis remain undiagnosed (3).
Does endometriosis only affect women in their 30s and 40s?
No. Endometriosis can begin with the first menstrual period and last until menopause (1). Studies have shown that it can take many years to get a diagnosis: one Brazilian study showed an average time of seven years to diagnosis (4), and other studies in the UK and USA have found diagnostic delays of 8 and 12 years, respectively (5). As a result, many people are older when they finally receive an official diagnosis.
The way people experience endometriosis varies from person-to-person, which may contribute to why many healthcare providers cannot easily diagnose it (1). Receiving a diagnosis can take longer if your primary symptom is pelvic pain instead of infertility (4). Many people, including healthcare providers, might consider painful periods typical (4), and it’s not uncommon for people to have decades of painful periods before they’re diagnosed with endometriosis (4).
Can you catch endometriosis?
No. You cannot ‘catch’ endometriosis. It cannot be passed from person to person by physical or sexual contact. Endometriosis is a medical condition that has no clear known cause (yet!). It is believed to be influenced by various factors, including genetics, hormonal imbalances, and the immune system (6).
Is endometriosis genetic?
We’re not sure. There is currently no known cause of endometriosis but it is highly suspected to be influenced by genes, hormones, and the immune system (6). But that does not mean that someone who has a genetic predisposition to endometriosis is guaranteed to develop the condition.
Can hormonal treatments cure endometriosis?
No. Synthetic hormonal medications, like the pill, progestins, Danazol, and GnRH-analogues, have been used for many years to manage endometriosis symptoms (1). One study showed that hormonal treatments can treat the symptoms of endometriosis and prevent recurrence after surgery (7). These hormonal treatments temporarily prevent and slow the growth of new tissue, but they don’t get rid of endometrial tissue that’s already there (2). The drugs only work while they’re being taken (7). Once the use of the medications stops, symptoms often return (7).
Does pregnancy cure endometriosis?
No. Pregnancy - like hormonal treatments - may temporarily suppress endometriosis, but it does not cure it (8). Symptoms usually return after childbirth (8). Sometimes breastfeeding may delay the return of symptoms, but only when breastfeeding is done frequently enough to suppress the menstrual cycle (9). In one study, 84% of women had a recurrence of at least one endometriosis symptom within two years of delivery (9).
Can a hysterectomy cure endometriosis?
Not necessarily. It’s possible to have endometriosis without having a uterus since endometrial-like tissue can grow in many places in the pelvis, like the lining of the abdominal cavity or bowels (1,7). A hysterectomy, the removal of the uterus and sometimes the ovaries, is a last-resort treatment (7). This irreversible option is usually recommended after other medications and laparoscopic surgery (the conservative surgical removal of endometriosis tissue) have been tried without success (7). Around 10% of people with endometriosis will eventually need surgery (10).
A hysterectomy may have more risks and complications than a laparoscopic surgery (7, 11). In one study, 46% of people experienced complications following a hysterectomy (11). Having a hysterectomy will cause immediate infertility and may result in the onset of menopause, even when the ovaries are not removed, ending (or rapidly speeding up the end of) a person’s reproductive time (11,12). People who had a hysterectomy were less likely to need another surgery than those who had a laparoscopy (11). Hysterectomy may offer pain relief, but it’s not a guaranteed solution (11). Approximately 8 in 10 people experience pain within 2 years of surgery (2).
Can I get pregnant if I have endometriosis?
This varies from person to person. Infertility and subfertility, being unable to conceive after a year of unprotected intercourse, are common symptoms of endometriosis (13,14). Approximately 4 in 10 infertile people have endometriosis (2). Endometriosis can cause infertility through inflammation, which damages eggs and sperm, or through anatomical changes and scarring (2). However, this does not mean that getting pregnant is impossible for people with endometriosis. Some studies have shown that around 65% of people with endometriosis have spontaneously conceived (7). So there is hope for people with endometriosis, and fertility treatments may improve the chances of conception (7).
Wondering if you might have endometriosis?
If you think you have endometriosis, self-tracking your cycle and symptoms can help provide a record that can give your healthcare provider information that may help with diagnosis and inform a personalized symptom management plan. Early management can reduce the risk of complications (15).
In the Clue app, you can track different types of pain, pain levels, and other symptoms and cycle-related experiences. If you’re subscribed to Clue Plus, you can use the Analysis Tab to get additional insight into your cycle patterns and statistics over time. Clue also visualizes your personal data so that you can keep track of how your symptoms may change over time.
Article originally published on March 20, 2018.
