Myths and Misconceptions
Reviewed by: HU Medical Review Board | Last reviewed: June 2018 | Last updated: September 2020
There are many myths and misconceptions out there about endometriosis. Let's look at myth versus fact!
Myth #1: Endometriosis only develops after age 30
The age group with the highest incidence of endometriosis has been slightly debated, however, most experts agree that women who are of reproductive age, roughly ages 25-40, are the most commonly affected by the condition.1,2 Despite this, endometriosis can be diagnosed at many points across the lifespan, including in adolescence through menopause, but diagnosis before puberty and post-menopause is rare. It has been estimated that nearly 70% of all women with endometriosis started experiencing symptoms before 20 years old.3
Myth #2: Women with endometriosis can't have children
It has been estimated that 20-50% of women with infertility are diagnosed with endometriosis, however, not every woman with endometriosis will be infertile.1,4 In some cases, endometriosis may decrease the chances of a woman becoming pregnant, but she can still conceive. In other cases, a woman's fertility may not be affected at all. The impact on fertility as a result of endometriosis can vary significantly from person to person. Many women with endometriosis utilize fertilization-enhancing treatment options, become pregnant, and deliver healthy babies. Some of these methods include hormonal therapy, surgery to remove fertility-impacting cysts or lesions, intrauterine insemination, or in vitro fertilization.2,5
Myth #3: Having children prevents endometriosis
Having children is a protective factor for endometriosis. Protective factors are things that decrease an individual's risk of developing a condition, or that decrease the negative impact of a risk factor. It's important to note that possessing a protective factor for a condition, such as having one or more children in the case of endometriosis, does not guarantee prevention of the condition. Individuals with one or many protective factors for a condition may still develop the condition. In this case, having children may reduce an individual's risk of developing endometriosis, but it is not guaranteed.2,6
Myth #4: Endometriosis never goes away without treatment
Endometriosis and its accompanying symptoms can vary from person to person. For some individuals, relief from endometriosis symptoms accompanies pregnancy, for others, symptoms seem to subside after menopause. Occasionally, symptoms may disappear on their own, while in other instances, spontaneous relief may never be experienced.2,7 It's important not to expect spontaneous relief from endometriosis or guaranteed relief post-menopause and to continue to work with your healthcare team to figure out what treatment options may be best for you.
Myth #5: Endometriosis lesions become cancerous
Endometriosis is often linked to an increase in risk of developing certain cancers, including ovarian cancer, however, the exact relationship between the two is not well understood. Some experts believe that atypical endometriosis lesions or endometriomas (cysts in the ovaries) may eventually transform into cancerous masses. Some of the theories behind this rare and slow process are that endometriosis leads to constant inflammation which can promote cancer development, as well as due to hormonal imbalances or immune system-related issues that can also allow malignancies develop.8-10 As mentioned, this occurrence is rare, and its probability can vary greatly from person to person, since there is a variety of other factors that an individual may possess that could increase their personal risk of developing cancer. For the most accurate information on your personal risk, consult your doctor or healthcare team.
Myth #6: There are no treatment options for endometriosis
There is no cure for endometriosis at this time, however, there are many treatment options. Treatment regimens can vary from person to person, depending on the individual's past medical history, severity of the condition, and/or if they are trying to become pregnant, among other considerations. Common treatment options include pain medications, hormonal therapies, surgery, or fertility interventions if a woman is trying to get pregnant. Treatment effectiveness, like treatment regimens, can vary from person to person as well.11
Myth #7: Endo-related pelvic pain only happens during a woman's period
Endometriosis-related pain, specifically pelvic pain, can happen at any time for women with the condition. This pain is not exclusive to a woman's period. Pelvic pain can happen at any and all points throughout a woman's menstrual cycle, as well during sex. Additionally, women with endometriosis may experience chronic, generalized pelvic pain, as well as gastrointestinal distress or bowel-related issues depending on what structures their endometriosis affects. Pelvic pain for individuals with endometriosis can be severe and chronic, virtually non-existent, or any variation in between. It is important to note though, the severity of the pelvic pain experienced often does not directly correlate with how severe her endometriosis is. For example, a woman with severe pelvic pain may have mild, superficial endometriosis lesions, while a woman with no pain at all may have a very severe or deep-infiltrating form of the condition.2,12
Myth #8: Endometriosis is an STD
Endometriosis is not a sexually transmitted condition nor a sexually transmitted infection. Although endometriosis may have similar symptoms to some common sexually transmitted conditions (such as pelvic pain or pain during sex), and affects the female reproductive system, it is not caused by sex nor sexual encounters. The exact cause of endometriosis is unknown, however, there are several common theories as to why the condition may occur, including retrograde (backwards) menstrual blood flow, genetic factors, hormonal imbalances, immune system-related issues, and endometrial cell transport, among other theories.12