Why Is Endometriosis Still So Hard to Diagnose and Treat?
Often referred to as an “invisible illness,” many women suffer from endometriosis pain for a decade before getting a diagnosis.
By Julia Malacoff
December 14, 2020
What do Halsey, Olivia Culpo, Julianne Hough, and Lena Dunham all have in common? They’ve all been outspoken about dealing with endometriosis, a chronic condition where tissue similar to the kind that normally lines the uterus is found in other parts of the body.
In people with endometriosis, this tissue is usually found in places like the ovaries, fallopian tubes, intestines, and bladder. In some rarer cases, it can also be found outside the pelvic area, in the lungs, diaphragm, GI tract, and other areas. Because it’s difficult to diagnose, it’s hard to say how many people have endometriosis, but in the U.S., it’s estimated that it may affect more than 11 percent of women ages 15 to 44.
In many ways, celebrity activism about endometriosis is a good thing. “I think every woman’s story deserves to be heard,” says Diana Falzone, Director of Media Relations and Advocacy at the Endometriosis Foundation of America. “And these high profile women coming forward and discussing it shines a light on individual stories.”
That’s key because many people aren’t aware the symptoms they experience could be tied to endometriosis. When Falzone herself was diagnosed at 33, she had only heard the word once. “A teacher of mine said her daughter had endometriosis. I didn’t know what that meant,” she remembers. After visits to the ER and her regular gynecologist for extreme pain, heavy bleeding, and a persistent low-grade fever proved fruitless, Falzone sought answers.“I thought, ‘I know my body. I know something is terribly wrong. I’ve never been sick like this,’” she says.
Eventually, Falzone saw a specialist who discovered she had a uterine fibroid and endometriosis. She had excision surgery in 2016, which means the areas of endometrial-like tissue outside her uterus were removed.
Though the symptoms that led Falzone to get treatment were extreme, they weren’t always that way. Looking back, she says she realized that some symptoms that she and her doctors had written off as normal (seven to 10-day periods, heavy menstrual bleeding, debilitating menstrual pain) were likely early warning signs. “I think knowing that there is an illness that could correlate with symptoms that you might experience in the future is powerful,” Falzone adds.
Endometriosis is sometimes mistakenly considered synonymous with painful periods.
While it’s true that painful periods can be a symptom of endometriosis, the condition can cause a host of other symptoms and problems. In other words, just because a person doesn’t have painful periods doesn’t mean they’re endometriosis-free. Likewise, just because you have menstrual pain doesn’t necessarily mean you have endometriosis.
According to Eric Surrey, M.D., Medical Director of CCRM Colorado, symptoms of endometriosis can include:
- Mild period pain
- Debilitating pain during your period and other times during your cycle
- Pain with intercourse
- Pain with bowel movements
- Pain with urination
Many people with endometriosis also struggle with fatigue and depression, Surrey says. “There is a significant impact on personal and professional life with loss of time at work or school, and decreased ability to positively interact with family, friends, and partners,” he explains. Symptoms can also have a negative impact on sexual relationships.
There are also some misconceptions about endometriosis to be aware of, says Ken Sinervo, M.D., a world-renowned endometriosis expert and advanced minimally invasive gynecologic surgeon. An important one to address: Endometriosis doesn’t only affect people with periods. “Endometriosis is found in people without periods such as post-hysterectomy and post-menopausal patients, as well among as trans-identified and gender non-conforming individuals,” Dr. Sinervo says. “In rare cases, it’s even been found in cis males.”
It’s also important to note that there’s more than one “type” of endometriosis, based on where the tissue is found in the body. Evaluation and treatment of endometriosis for women with pain is also different from those with infertility or no symptoms, notes Dan Martin, M.D., Scientific and Medical Director of The Endometriosis Foundation of America. “Women with no symptoms may not need treatment.”
Why is it so hard to get diagnosed?
You may have heard the statistic that it can take 10 years, and more than five healthcare providers, for women to actually get diagnosed with endometriosis.
“It is tricky to diagnose endometriosis because the only way to definitively make this diagnosis is to perform laparoscopic surgery,” Surrey says. That said, doctors who specialize in endometriosis may be able to determine that a person’s symptoms, physical examination findings, and ultrasound findings are highly suggestive of endometriosis. From there, a care and treatment plan can be made, Surrey says.
And endometriosis isn’t hard to suspect if you listen to patients, Sinervo says. “Unfortunately, symptoms remain too often normalized, ignored, and dismissed, particularly among adolescents.” While surgery is invasive, it’s the gold standard for confirming a diagnosis, and also allows for treatment at the time of diagnosis, Sinervo adds.
Diagnostic methods that don’t involve surgery are on the horizon, both Sinervo and Surrey note. But more research is needed for them to be validated enough to use with patients.
Unfortunately, funding for endometriosis research is scarce compared to other health issues. And as of now, things aren’t looking great for 2021: Endometriosis isn’t included as an eligible condition on the Department of Defense Peer-Reviewed Medical Research Program for 2021, and is listed for a lower amount of funding in the National Institute of Child Health and Human Development appropriations legislation than anticipated.
“Without that money, we’re kind of being put in the back burner of illnesses that are not considered serious enough or important enough to give funding to,” Falzone says.
What treatments are available for endometriosis?
As of now, there is no cure for endometriosis, but medical management and treatment options for endometriosis may include:
- Oral contraceptives
- Non-Steroidal-Anti-Inflammatory Drugs (ibuprofen or naproxen) and other pain medications
- Hormonal IUDs
- High doses of oral or injectable progestins (synthetic progesterone)
- Injectable GnRH agonists
- Laparoscopic excision surgery
Which treatment method is used first depends on the patient’s goal, Surrey says. For instance, if you’re hoping to get pregnant, your treatment or management plan would likely be different from someone whose primary goal is pain relief.
Usually, in people with suspected endometriosis, doctors will try hormonal contraceptives first in combination with NSAIDs. If no improvements are observed within the first several months, doctors interviewed for this story — who specialize in endometriosis — said they proceed to surgery, second-line medical approaches, and/or complementary medicine.
“There are real differences in how this disease is treated, and the earlier endometriosis is diagnosed and treated properly, the better the outcomes are for those struggling,” Sinervo says.
Plus, not all surgeons are experienced with spotting endometriosis and removing it. “As a result, many patients may receive incomplete treatment, which can lead to persistent symptoms and recurrent disease.” If you’re considering having surgery for endometriosis, it’s important to ask questions like how experienced your surgeon is with endometriosis and how exactly they will perform the surgery.
It’s also key to understand that medical treatments besides surgery may temporarily help with pain, but they don’t actually treat the disease, Sinervo says. Other complementary treatments that could provide temporary relief and improve overall well being (but won’t remove endometriosis) include:
- Pelvic floor physical therapy
- Nutrition therapy
- Traditional Chinese Medicine
- Mindfulness-based therapies
How to advocate for yourself if you think you might have endometriosis.
1. Know that it’s not all in your head. “Though an absolute cure remains elusive, it is possible to live well in spite of endometriosis,” Sinervo says. “If you are someone who suffers from pelvic pain, painful sex, crippling periods, infertility, bowel or bladder issues, or any of the far-reaching symptoms of endometriosis, please know it’s not in your head and help IS out there. Believe in yourself and try not to be discouraged by this disease.”
2. Find a doctor you can talk to. “If you have tried to speak to your doctor and they are not listening to you, the best thing to do is find another doctor,” Falzone says. Surrey agrees: “If you feel that your physician is ignoring or minimizing these concerns, it might be time to see someone else.”
3. Evaluate your options. When it comes to endometriosis, not all doctors are created equal. If you suspect you might have it, seeking out an endometriosis specialist is your best bet. You can find doctors who specialize in diagnosing and treating endometriosis in several directories. For instance, you could try reaching out to The Endometriosis Association, The Endometriosis Foundation of America, or the Society for Assisted Reproductive Technology (if you’re dealing with infertility potentially related to endometriosis).
Unfortunately, due to insurance coverage, specialists who don’t take insurance, financial constraints, and geographical limitations, seeing an endometriosis specialist may not always be possible. “At the very least, you want to find a gynecologist who is knowledgeable about endometriosis,” Falzone says. “So when you’re calling and trying to make appointments, there’s nothing wrong with asking: ‘Hi, does Dr. o-and-so have working knowledge of endometriosis? And if they say no, then make the next call.”
4. Go to your doctor with details. “Physicians may not specifically ask about endometriosis symptoms in a brief well-woman visit,” Surrey says. So, however unjust it is, the burden is often on the patient to speak up during an annual exam and describe their symptoms.
“It’s a good idea to be prepared to describe your concerns precisely, such as when in cycle does the pain come, where is the pain, what does it feel like (stabbing, crampy), is the pain associated with intercourse, bowel movements, urination, or some other activity?” Surrey says. “The doctor should ask these questions, but if not, be prepared to give this information. It should do a lot to bridge the gap!”
5. Use social media to your advantage. “For me, social media was very, very helpful,” Falzone says. “I was able to find a lot of other women who had endometriosis online, and they helped me get the backbone I needed. When I was hitting roadblocks with doctors, I had these women tell me, ‘Hey, your pain is real. It’s not in your head. You need to find a different doctor.’”
6. Keep endometriosis in the conversation. It’s important for everyone to know about endometriosis, even if they don’t suffer personally or just haven’t been diagnosed yet, Sinervo says. “While certain progress into understanding the disease has been made, deeply entrenched cultural norms surrounding pelvic pain, endometriosis, and menstruation must continue to be challenged.”
“We need better education of and awareness by women, their parents, their peers, educators in the schools, and providers, particularly on the normalization of pain,” Martin agrees. People need to stop hearing platitudes like “pain is part of being a woman,” he adds. And the only way that’ll change is if we continue to challenge it.