While we have come a long way in understanding this condition, it can be difficult to get accurate information. Whether you’re just learning about endo, or you’ve spend years trying to seek relief, understanding the facts is a necessary part of the process.
At Well Being, it is important to us that we are actively working to educate our patients and the community. The claims listed below are based on actual statements we’ve heard from other providers (yes, people claiming to be “experts” in endometriosis) currently presenting these as factual information. How are you supposed to know what and who to trust? Don’t worry, resources and more accurate facts are listed at the end.
CLAIM: “A hysterectomy will cure endometriosis.”
NOT SO FAST
According to the Endometriosis Foundation of America, endometriosis is often found in the bowel, bladder, intestines, appendix, and rectum. It can also be located on the kidneys, lungs, diaphragm, or brain. Therefore, if a hysterectomy is given as the only solution, it shows a lack a depth of knowledge specific to this disease. A good endometriosis excision specialist will be able to explain the pros and cons of your surgical options. They will help you weigh your symptoms and your goal and will talk to you about what options are available before your surgery, should you choose to have one.
CLAIM: “If an ultrasound shows nothing, then I don’t have endo.”
NOT SO FAST
The good news is that there are specialists who can identify endo with an ultrasound. This means exploratory surgery for a diagnosis will *fingers crossed* become an outdated diagnostic tool. However, that does not mean that a standard ultrasound performed by a non-specialist can tell you whether or not you have endo. As of now, you need an expert for that. Even then, it can still be missed. It takes a bigger-picture look at all of your symptoms in addition to exams and imaging to be as certain as possible.
CLAIM: “Women who have never had children are more likely to develop endometriosis than women who have had children.”
MYTH
There is no evidence to support this claim. According to a 2018 report in Volume 24, Issue 3 of Human Reproduction Update, “study results on the effect of pregnancy on endometriosis are controversial and pregnancy in women with endometriosis is not always associated with improved symptoms. Moreover, there is increasing evidence that endometriosis may interfere with a successful pregnancy outcome. While it is true that some people can experience a reduction in endo symptoms during a pregnancy, it is NOT a “cure” for endo, nor a recommended “treatment”. What is likely more true regarding this claim, is that it is not whether or not you’ve had children affecting endo symptoms, but rather the endo symptoms are more likely to affect whether or no you can/want to have a pregnancy.
CLAIM: “Women who have had the same sexual partner for a long period of time are at an increased risk of developing endometriosis.”
MYTH
We could not find any evidence to support this claim. In fact, Dr. Seckin at The Seckin Endometriosis Center in New York says, “A woman’s sexual activities or preferences have nothing to do with endometriosis.” Similar to the claim above, it is more likely that a person has fewer partners as their severity of symptoms increase. They are more likely choosing to or unable to have multiple partners do to impact of pain, lifestyle, and self-care. Dating with endo can be very challenging.
CLAIM: “Retrograde menstruation causes endometriosis.”
MYTH
This hypothesis is known as Sampson’s Theory, developed by Dr. John A. Sampson in the 1920s, but the science doesn’t hold up. “Retrograde flow is common, occurring in most people who menstruate, so this theory wouldn’t explain why just 1 in 10 menstruators would develop endometriosis,’ says Ken Sinervo, the medical director at the Center for Endometriosis Care in Atlanta, Georgia. As for Dr. Seckin, his website claims that retrograde menstruation may play a role, but “new evidence is disputing this theory.” Dr. David Redwine devoted a much of his career to disproving this theory and promoting research toward progress.