Endometriosis Isn't Actually Rare Among Women (& More Myths To Be Aware Of)

Endometriosis is a condition that affects between 2 and 10% of women from the ages of 25 and 40 in the U.S. (via Johns Hopkins Medicine). With millions of women experiencing this painful disease, which involves endometrial-type tissue growing outside of the uterus, it's far from a rare occurrence. And yet, endometriosis is still widely considered to be an uncommon condition, which perhaps explains the lack of research behind it.

A 2022 study published in Frontiers in Global Women's Health revealed that endometriosis research funding from major bodies like the National Institutes of Health accounted for just .038% of the 2022 health budget, despite the fact that the disease affects around 190 million women worldwide.

Women who buy into the idea that endometriosis is rare may fall into the trap of thinking, "It would never happen to me." This belief may lead them to suffer through the intense pain associated with endometriosis, believing it's just normal period pain. So it's vital that women know that endometriosis is more common than people think, and it can affect anyone, no matter how old.

Sadly, the presumption that endometriosis is rare is far from the only myth surrounding this misunderstood condition.

Endometriosis only affects the pelvic or groin area

One of the most enduring myths about endometriosis is that it only affects the pelvic area. The most typical symptom of this condition is severe period pain, so people naturally assume that the only place you can develop endometriosis is the groin and stomach. While endometriosis does most commonly grow on the uterus, fallopian tubes, and bladder, causing well-known symptoms like pelvic cramps, heavy bleeding, and pain during intercourse, it can also be present elsewhere in the body.

According to Harvard Medical School, endometriosis growths have been known to occur on the lungs. Though this is rarer than endometriosis in the pelvic region, it is possible. The signs of growth on the lungs include shortness of breath or wheezing, coughing, and chest or shoulder pain (via MedicalNewsToday). Endometriosis in the lungs can lead to potentially fatal complications, such as collapsed lungs, so it's crucial to seek medical attention if you think you're affected.

It's also important to recognize that endometriosis that is present in the pelvic region can cause more symptoms than period pain. It can also lead to pain in the back and legs, nausea, fatigue, digestion problems, and infertility, per HCF.

Tampons can cause endometriosis

Many myths surrounding women's health are associated with tampons. Tampax outlines some of the most popular myths you might remember from the schoolyard: Tampons can get lost inside your body (no) or you shouldn't use a tampon with your first period (also no). One lie that can be particularly harmful if it's allowed to continue on into adulthood is the belief that tampons can cause endometriosis. If you're letting the fear of endometriosis prevent you from wearing tampons, it's time to clear a few things up.

This untruth may stem from the connection between endometriosis — which is still being studied — and retrograde menstruation, which occurs when menstrual blood flows up through the fallopian tubes rather than exiting the body in the usual way.

As HCF confirms, researchers have found no link between using tampons and developing endometriosis. Tampon use was found to be the same in women with and without this condition, and Tampax explains that this is because tampons can't "block" the cervix and send period blood back up to the uterus.

Hormonal treatments can cure endometriosis

Health professionals don't have all the answers surrounding endometriosis yet, so more research is being conducted. But at the moment, one of the most common "remedies" for endometriosis is the birth control pill. Doctors may also prescribe other hormonal treatments, including progestins or GnRH-analogues, per Endometriosis.org.

It's important to understand that while these drugs may deal with the symptoms of endometriosis and enhance your quality of life, they don't actually remedy the condition itself. Taking the pill or another hormonal treatment is not a cure in that if you were to stop taking it, even after years, the endometriosis and its symptoms would likely return. This also means that hormonal treatments don't make it more likely that women with endometriosis will conceive, as these drugs don't actually clear up the endometriosis in your body (along with the fact that they act as birth control). While this may sound disheartening, there is still one method of treatment that has proven to be effective in actually curing the condition: surgery.

As surgery is currently the only efficient and proven medical remedy to actually remove the endometriosis from your body, the subsequent myth that it will leave horrific scarring also needs to be dismantled. Grace Private confirms that endometriosis surgery is not likely to cause disfiguration when performed by a qualified specialist.

Endometriosis is an emotional problem

It may be hard to fathom, but endometriosis is sometimes dismissed as an emotional problem. According to Endometriosis.org, some women believe or are told that their condition was caused by trauma or emotional complications. This myth may stem from the misogyny-rooted attitude of viewing women as "hysterical" when they voice their pain or concerns. It may also be influenced by other women's health issues that actually can be affected by psychological factors, such as vaginismus. However, it's blatantly incorrect.

Endometriosis.org states that the disease is completely physiological and "rooted in very real, highly complex hereditary, epigenetic, and molecular underpinnings." It has nothing to do with your emotions. While you may understandably deal with complex or heavy emotions after diagnosis, your feelings can't cause endometriosis to appear in your body.

In the same way that endometriosis may be dismissed as an emotional problem, it's also commonly misdiagnosed as normal period pain. Health professionals emphasize that severe pain is not a normal part of menstruation, and there is no reason to put up with it. If your doctor tells you that your intense cramps or irregular heavy bleeding are "just part of the package," seek a second opinion.

Endometriosis is an STI

Another harmful myth to stop buying into about endometriosis is that you can develop it after having sex. Despite what you may have heard, endometriosis can't be sexually transmitted and is not an STI. The belief in this fallacy may cause some women to suffer in silence because they believe it was somehow their own actions that caused the condition. However, you are never responsible for your endometriosis (and even if it were an STI, you would still absolutely deserve treatment!).

One of the reasons why myths like this persist is because few people understand how endometriosis actually works. The condition occurs when tissue that would normally line the inside of your uterus grows outside of your uterus (via Mayo Clinic). It thickens and bleeds with every menstrual cycle, just as it would if it existed inside your uterus. Except because it can't exit your body the way it normally would (through your uterus), it remains trapped in your body. This can the affect the surrounding tissue, and you may develop cysts, scar tissue, and other complications that cause severe pain. It's a naturally occurring phenomenon and, as far as health professionals understand, is in no way related to anything you might have done.

You will only feel endometriosis symptoms once a month

Because endometriosis is associated with period pain, many people assume that you will only experience the pain that comes with it once a month during menstruation.

University of Queensland School of Public Health researcher Dr Ingrid Rowlands explained to HCF that endometriosis is an "inflammatory condition" that you may feel "throughout the entire menstrual cycle" rather than just on the days when you have your period. "Some women might feel pain on most days, whereas it might come and go for others; other women will have no pain," she told the website.

Because the pain can last much longer than just a few days, the financial toll of endometriosis tends to be more than most people assume. Many affected women have to frequently miss work or buy ongoing supplies of painkillers. Naturally, the emotional repercussions of the condition can also be more severe in women who are in constant pain with few days of relief.

If you notice that your period pain lingers for significantly longer than your period itself, or if you regularly experience other symptoms throughout the month, it's always a good idea to talk to your doctor.