Here's what people get wrong about endometriosis: 'A lot of people think we make up our pain'

·6-min read
A common theme for people with painful endometriosis is a fear of being dismissed, says an expert. (Photo: Getty Images)
A common theme for people with painful endometriosis is a fear of being dismissed, says an expert. (Photo: Getty Images)

Although more than 6.5 million women in the U.S. suffer from it, endometriosis isn't well understood. It's commonly misdiagnosed as other health conditions, and women can take between six to 11 years to receive a proper diagnosis.

Unfortunately, many are led to believe that it's "normal" to experience the painful periods that can come with endometriosis, and many suffer in silence for years. Others may not even realize they have the condition until they have difficulty conceiving.

The odds are that you've at least heard of endometriosis, but you may be fuzzy on what, exactly, this condition entails. Here's what you need to know.

What is endometriosis?

Endometriosis is a condition that occurs when tissue similar to the lining of the uterus (known as the endometrium) grows outside the uterus and in other areas where it doesn't belong, according to the U.S. Office on Women's Health. Endometriosis can show up in plenty of different places within the body, but it's most commonly found on the ovaries, fallopian tubes, the tissue that holds the uterus in place and outer surface of the uterus.

How does endometriosis affect the body?

It's possible to have endometriosis and have no symptoms, but people will often experience the following signs of the condition, according to the American College of Obstetricians and Gynecologists (ACOG):

  • Chronic pelvic pain, especially just before and during a period

  • Heavy bleeding

  • Pain during sex

  • Pain during bowel movements

  • Pain during urination

  • Infertility

  • Digestive issues

Endometriosis growths can also swell and bleed, triggering pain because the tissue grows and bleeds in an area where it can't easily leave the body, ACOG explains.

Why is endometriosis often misdiagnosed?

An endometriosis diagnosis can be missed for years, or even misdiagnosed as a condition such as irritable bowel syndrome (IBS).

"There’s a lack of awareness of endometriosis across the board, for both patients and providers," Dr. Meenal Misal, an ob-gyn at The Ohio State University Wexner Medical Center, tells Yahoo Life. "Women may not recognize their own symptoms as being out of the ordinary. Unfortunately, they may even be told that they are exaggerating their symptoms, or that it is all in their head. There is a lot of evidence that women’s pain is sometimes not taken seriously by the medical field."

Endometriosis is also technically only diagnosed through a surgical procedure called laparoscopy, and that's not something most doctors or patients are eager to rush into, Dr. Christine Greves, an ob-gyn at the Winnie Palmer Hospital for Women and Babies, tells Yahoo Life. "You don't want to jump into surgery right away to prove the diagnosis," she says.

Many doctors also aren't often given enough training in residency to deal with the treatment of endometriosis, Dr. Tamisa Koythong, assistant professor of obstetrics and gynecology at Baylor College of Medicine, tells Yahoo Life. As a result, she says, they may not know what to look for. "A common theme in most patients who come see us is a fear of being dismissed, as they have often been dismissed in the past by multiple other providers, once their evaluation is seemingly 'normal,'" she says.

Even if doctors spot something off, they may not know what they're looking at. "Endometriosis has been classically taught as having 'powder-burn lesions,' but we know now that endometriosis can have varied and atypical appearance in the pelvis, such as clear, red or yellow lesions, or the appearance of windowing in the pelvis," Koythong says.

AJ Williamson, who runs the Instagram account @ScarsOfEndo, was diagnosed with endometriosis in November 2020. "A lot of people think we make up our pain, or that we can just take medicine and the pain will just go away," she tells Yahoo Life.

Williamson said she struggles with pelvic and nerve pain in her legs due to her condition. "This is not typical period pain," she says, noting that her endometriosis also makes it hard for her to walk, given the leg pain she experiences.

What are the health risks of endometriosis?

One of the biggest health risks, besides dealing with regular pain, is infertility, Misal says. Women with the condition can find it difficult to conceive. "Women with endometriosis may also experience higher rates of pregnancy complications, like preterm birth, miscarriage, placentation abnormalities and cesarean delivery," she says.

Endometriomas, endometrial cysts that can form on the ovaries, also have an increased risk of turning into ovarian cancer, Misal notes.

It's not uncommon for women with endometriosis to experience anxiety and depression, too, Koythong says. "In very severe cases, we have seen renal failure and need for bowel resection and colostomy or ileostomy associated with endometriosis," Koythong says. "Thankfully, this is not the norm."

Endometriosis may improve with menopause, Greves points out, but there's no guarantee of it. Some case studies have found that women continue to have pain after going through the life change, Misal notes.

How is endometriosis treated?

A wide range of potential treatments for endometriosis are available. Typically, doctors will start women on a hormonal birth control pill to try to limit their painful periods, Greves says. She cautions, though, that "This doesn't help everyone."

Other medications to treat endometriosis include nonsteroidal anti-inflammatory drugs (NSAIDs), progestin-only medications and gonadotropin-releasing hormone (GnRH) agonists, ACOG says — noting that hormonal medications help slow the growth of the endometrial tissue and may keep new tissue from forming. However, these medications don't get rid of lesions that are already there.

Patients with more severe endometriosis may undergo surgery, either for relief of painful symptoms or because they're having fertility problems, the U.S. Office on Women's Health says. During surgery, doctors will try to locate endometriosis and remove patches.

What to do if you suspect that you have endometriosis

Finding the right provider to take your pain seriously is key, says Greves. Williamson agrees. "You know your body better than anyone does," she says. "A lot of practitioners brush off women's pain levels and won't listen to them. It's important to be your own advocate, and you have to keep fighting until someone listens to you."

It's possible to lead a healthy, comfortable life with endometriosis, Misal says — you just need to find the right treatment first. "Many women have complete resolution or significant improvement in their symptoms with treatment of endometriosis," she says. Unfortunately, that's not a given. "We know now that endometriosis is typically a chronic condition and can unfortunately recur, despite expert excision of lesions," Koythong says.

That's why it's so important to talk to your doctor about your symptoms and to keep communicating when things feel off, Williamson says. "If you feel that something is wrong, then something is wrong," she says. "You have to speak up."

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