Endometriosis: Why It Can Take Up to a Decade To Get Diagnosed

6 min read|Mar 22, 2022|fbtwitteremail

You may have heard the term endometriosis, particularly during March’s Endometriosis Awareness Month. Aka endo, it’s a condition that can cause chronic pelvic pain and fertility problems in some people. And it affects an estimated 10% of women of reproductive age (roughly the 15-44 age range). This might be a conservative estimate considering it’s a disease that’s often misdiagnosed, overlooked, and largely misunderstood. (A trend for health issues that primarily impact women.) 

But awareness of the disease has been growing over the last few years, thanks in part to A-list advocates like Padma Lakshmi, Chrissy Teigen, Amy Schumer, and Lena Dunham. Another person looking to educate others on endo: OB-GYN Dr. Natalie Crawford, reproductive endocrinologist and co-founder of Fora Fertility in Austin, Texas. We asked her all about what it is, why it’s hard to diagnose, and what treatment is available. Because it’s time to demystify endo. 

What is endometriosis? 

To understand endometriosis, first you need to know about the endometrium: It’s the tissue that normally lines the uterus and plays a major part in the menstrual cycle and pregnancy. Someone with endometriosis has tissue similar to endometrium growing outside of the uterus and on other parts of the body where it doesn’t belong (think: ovaries, fallopian tubes, and pelvis).

The most common symptom of endo, according to Dr. Crawford: intense pain. Picture menstrual cramps (endo pain can often occur while you’re on your period), but they’re so bad that you might have to call out sick from work. 

Dr. Crawford says endo can also cause “deep internal pain” when having sex. And it might lead to GI issues, too. Think: nausea, extreme bloat, and diarrhea.

Thing to know: There’s a “genetic link” involved with endo, Dr. Crawford says. If your mom or sister has it, you’re more likely to get it. And women with endometriosis are much more likely to have other autoimmune diseases themselves or in their families like autoimmune thyroiditis, celiac disease, lupus.

If endometriosis is so painful, why can it take a long time to get a proper diagnosis?

One reason: There’s not a simple test for endo. An official diagnosis requires surgery, Dr. Crawford says. And although that surgery can be covered by insurance, it can be quite costly if it’s not.

Another reason: Since so many women have ‘bad cramps’ (see: more than 84% of women in this study), it can be hard to zero in on endo as the source of chronic menstrual pain

“Most women get dismissed by multiple health care providers until they become their own advocate to be taken seriously,” Dr. Crawford says. Because some OB-GYNs just aren’t trained to look for endo. As a result, she says, the average time to diagnosis for a woman who has endo is seven to 10 years. 

Another big reason that diagnosing endo takes so long, says Dr. Crawford, is because there’s long been a history of sexism in science. In other words: Issues that primarily impact women have long been ignored. And stigmatized. See: the wandering womb. As a result, some women might not feel empowered to speak up about their symptoms when seeing a doctor. 

But Dr. Crawford anticipates progress. Because in her experience there are more doctors learning to perform “minimally invasive gynecologic [surgery].” Which can be used for diagnosis and treatment of the disease. “And these are doctors specifically trained for endometriosis and very complex pelvic surgery. That's going to be fabulous for women's health.”

What should I say to my doc if I think I might have endometriosis?

Dr. Crawford says you can use a version of this script with your PCP or gynecologist: 

“I'm having very painful periods. I read about endometriosis and I'm very concerned I have this. Are you capable of diagnosing this for me?” And you can totally ask them to refer you to someone else if you think that’s necessary. 

“Put the ball in their court. Because [doctors are] all trained really differently,” says Dr. Crawford. She says her extra training in infertility included studying procedures that are common in endo treatment. “And so I feel very comfortable with that. Some people don't feel comfortable.”

Other things to consider when advocating for yourself: systemic racism still exists in health care, meaning people of color might find it even harder to get diagnosed. And the same is true for people of lower socioeconomic status, Dr. Crawford says. 

“[Some doctors] may not take pain complaints from certain populations as seriously,” she says, citing a 2016 study that suggested some white medical students believe that Black patients have different pain tolerance than white patients. “Something that's completely not true.”

What treatments for endometriosis are available?

There is no cure for endo. But there are some options for treating it. The go-to approach can combine surgical management and medication therapy, Dr. Crawford says.

As for surgery, that can involve a laparoscopy, which is when your doc makes a small incision in the abdomen and then uses a camera to view the excess patches of tissue. It can also include removing or destroying them. Medications used in endo treatment can include hormonal treatment like birth control pills, patches, and rings. Because those can regulate the amount of reproductive hormones flowing through your body. And that’s important because rises in estrogen can cause tissue (including the excess kind) to keep growing. Anti-inflammatory pain meds like Advil (ibuprofen) and Aleve (naproxen) might also help ease painful aches.

Dr. Crawford says it’s really important for patients to determine what their goals are with endo treatment. Because a treatment plan could differ between people who want to get pregnant and those who primarily want to manage the pain. 

And speaking of fertility, how does endometriosis affect that?

Dr. Crawford says that people with endo who are considering having kids need to be “proactive” with family planning, because the disease can make it difficult to get pregnant. That might mean considering options like egg freezing.

“Endometriosis, to me, is living on borrowed time,” she says. “The disease — if you don't do anything about it — will get worse and worse, and chronic inflammation over time leads to destruction. And it impacts your ovaries.” 

Endo can interfere with baby making in three ways, Dr. Crawford says:

  • Potentially lowering your ovarian reserve (from surgical intervention, or from cysts), aka giving you a lower number of quality eggs.

  • Creating a reproductive environment that’s “inflammatory” (i.e. “not very suitable to getting pregnant,” Dr. Crawford says).

  • Causing scarring on your fallopian tubes, which can get in the way of egg and sperm uniting to make a baby.

Of her patients who deal with infertility, Dr. Crawford estimates that about 30% have endo. "That's a huge number," she says.

theSkimm

If you’re dealing with ‘period cramps’ that are so severe they’re interfering with your day-to-day life, you might want to talk to your doctor about whether the pain is coming from something like endometriosis. Advocate for yourself and consider your personal goals if you’re diagnosed with endo. And remember: You’re not alone and there is treatment out there.

This content is for informational and educational purposes only. It does not constitute a medical opinion, medical advice, or diagnosis or treatment of any particular condition. 


Skimm’d by Carly Mallenbaum, Alex Carr, Anthony Rivas, Alicia Valenski, Eleanor Goldberg, and Jane Ackermann


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