One of the top 20 most painful diseases to live with is endometriosis. But if you ask most people, endometriosis isn’t even in the top 50 illnesses that come to mind. Endometriosis, often shortened to “endo” within the community, affects 200 million assigned females at birth worldwide.

Social stigma around endometriosis causes a continuous cycle of misinformation and lack of knowledge, leading to medical professionals often undermining patients’ concerns of pain and discomfort. The social stigma around endometriosis education for women’s bodies hinders the progress from combating the illness. Endometriosis is nothing less than mentally, physically, and financially debilitating from the initial diagnosis to living with the distressing disease.

Guidone accepting award for her work in Endometriosis at National Womens Health Foundation (Heather Guidone)

Both professionally and personally affected by endo is Heather Guidone, a board-certified patient advocate, endometriosis survivor, and program director of the Center for Endometriosis Care. Guidone proves how impactful this living with this disease can be. "There is not one part of my life that has not been touched by endometriosis."

Guidone was diagnosed with endometriosis through laparotomy back in 1989 for an official diagnosis. However, getting an official diagnosis is not as simple as running a few tests. Sufferers' concerns are often brushed aside by medical professionals because a proper diagnosis of endometriosis requires surgery.

“I was very lucky,” says Guidone. “I found a doctor who would listen and who was willing to immediately look for surgical confirmation and diagnosis. A lot of people will go through an average of five physicians and I only went through three.”

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It takes on average seven to 12 years to get diagnosed, which Guidone says is related to the common misconceptions around women’s cycles due to bias.

“A lot of it is related to bias and menstrual stigma because although endometriosis is not a menstrual disorder per se, a lot of the symptoms are linked to painful menstruation,” she adds.

Guidone brings up the type of frustrating questions and invalidations she gets asked from people who aren’t familiar with the disease. “You know, the ignorance is just so pervasive around this disease, and you combine that with the normalizing and trivializing of symptoms, you’re going to have somebody that's going to go seven to 12 years without a meaningful diagnosis."

Jeff Arrington, an OBGYN and surgeon, known for his endo advocacy, endometriosis surgical excision, and treatment, explains how ignorance from medical providers causes them to avoid surgery and go straight to treatment without a proper diagnosis.

Professional and Personal Testimonies

Dr. Jeff Arrington discussing surgery avoidance

Heather Guidone describing how endometriosis has impacted her life

The diagnosis process results in an estimated six out of 10 cases remaining undiagnosed. Not understanding the pain disrupting your daily activities can be extremely disheartening, frustrating, and isolating. If endometriosis is not treated, it can lead to infertility, debilitating pelvic pain, adhesions, and ovarian cysts.

Dr. Arrington performing surgery

Arrington emphasizes how not treating endometriosis is doing more harm than many people or professionals believe.“We've had patients recently where they just have been observed, haven't done anything, and they come in acutely with bowel obstruction, and lung collapses. All of these are risks of doing nothing and the risks of doing nothing are rarely discussed with patients,” Arrington says.

Dr. Kerry-Anne Perkins, an obstetrician-gynecologist, reaffirms that the medical field is behind, and patients would benefit from a better way to come to a diagnosis. “A lot of research is still needed to see if we can find a test or create something that would make it easier for us to confirm without having to take someone to the operating room,” Perkins says.

Endometriosis can be found anywhere near the ovaries, uterus, fallopian tubes, bladder, and lower pelvic walls. But because it can spread through the lymphatic system, the disease can travel throughout the body. Perkins has seen the disease travel near the lungs and the diaphragm and in other unexpected areas.

Dr. Kerry-Anne Perkins

While people living with endometriosis can experience painful symptoms during their period, symptoms can also manifest when menstruation isn't occurring. A huge misconception about the menstrual cycle is that it is normal to have pain, but that is not the case. Perkins adds that not all patients experience pain when receiving a diagnosis, making the disease even harder to identify.

There is no cure for endometriosis, but treatment options are available, like laparoscopic excision or hormone therapy. However, many of the current treatments available come with risks. The more invasive treatments may not always be an option for women; that is why registered dietitian Cindy Dabrowska has taken the holistic approach to manage this disease. She recommends lifestyle changes such as an achievable diet and supplements to help manage endometriosis through her work.

Cindy Dabrowska

Throughout the podcast, Dabrowska gives adivce to endo sufferers just beginning their journey with a healthier lifestle and how they can start.

Dr. Perkins also emphasizes how lifestyle, diet, and giving love to the body are essential. However, it is just as crucial for patients to advocate for themselves when speaking to doctors. She is happy with the medical community's strides but still hopes the future will look a lot different with this disease.

"I hope that our world will be so much brighter when it comes to the lives of endometriosis patients," says Perkins.

Guidone's hope is to get the bigger picture of this disease out to the public. She hopes once the condition is more understood, there will be change. "Maybe it will get people to stop having to go seven to 10 years without being diagnosed. And then another seven to 10 years with terrible treatments. I don't know. That's my hope. It'll be on my tombstone," says Guidone.

Guidone might not currently live with active endo pain, but the pain from the past lives with her every day. "I don't have active endometriosis pain, of course, but I live with the effects of all of that for treatment and the neglect and frankly, the trauma."

There are many resources that can be found online to get more informed, speak to a specialist, or donate to research to help the fight against this disease.