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The catastrophic barriers to treatment for endometriosis

Jul 5, 2021 | Featured six, Health | 0 comments

//Rose Schlosser stares out a window in her Loveland home on July 2. Schlosser underwent endometrial ablation in 2012 for the endometrioma on her left ovary. She is one of the 6.5 million Americans who have the common but misunderstood gynecological disease. Photo by Ali Mai | alimai@msmayhem.com

One in 10 people with uteruses has endometriosis. That’s a total of 6.5 million Americans and 176 million people worldwide. It’s one of the most common gynecological diseases. And yet, many have never heard of it. 

“The average patient has seen somewhere between seven and nine doctors, and it often takes about eight or nine years until they actually get diagnosed,” said Dr. Brian Nelson, an endometriosis excision specialist at UCHealth who serves patients in Longmont. “A lot of women are told it’s in their head. A lot of women end up suffering for a long period of time before someone actually validates their symptoms and makes the diagnosis.”

Endometriosis is caused by tissue similar to the lining of the uterus growing outside of the uterus. It leads to pain, organ dysfunction and infertility—something about a third of people with the diagnosis experience. A general lack of knowledge and widespread misinformation on this reproductive health concern expose countless numbers of those with uteruses to ineffective medical treatments. Activists across the nation work to draw awareness to the under-researched disease, yet many believe minor advancements have been made.

Common symptoms of endometriosis vary from heavy menstrual flow and painful intercourse to irritable bowel syndrome and recurrent nausea. While indicators of this disease vary between individuals, many reports from people with endometriosis share a common denominator—their pain is not taken seriously.

When Rose Schlosser of Loveland first informed a doctor of her excruciating periods, she was instructed to take Tylenol. It wasn’t until she underwent numerous failed fertility treatments later in life that someone finally took a closer look. 

“When I think about how many women have it compared to other diseases, it’s kind of mind-boggling that there’s not more study and more research put into it,” Schlosser said. “If this was a disease men had, I can’t imagine we’d be where we are now. It makes me angry.”

Upon diagnosis, Schlosser underwent endometrial ablation in 2012 for the endometrioma on her left ovary. It wasn’t until she landed in Dr. Nelson’s office eight years later that she learned the treatment method was completely ineffective. The debilitating pain she had been experiencing for the past 20 years could’ve been better managed. 

“I honestly believe if I had known back then what I know now, [I] probably would’ve been able to have children,” she said. “By the time I learned about endometriosis and that it requires incision surgery, I’d already had part of my left ovary removed. I was already coming from behind. I wish I had not been so trusting of the medical community from day one.”

Following her hysterectomy at the start of the pandemic, Schlosser now reports chronic pain doesn’t play an everyday role in her life anymore. The trauma from it, however, is a different story. 

“I can’t tell you how many women have come into my office and cried when I said, ‘You have this disease and it’s real. You’re not crazy,’” Nelson said. “[Endometriosis] needs to become its own specialty…All of us who are specialists are essentially self-taught.” 

Many dealing with this disease turn to educational libraries like Nancy’s Nook for support in managing their mental and physical health. Others turn to private support groups to connect with other people enduring the same thing. 

Two doctors at the Vital Health Endometriosis Center in Durango launched an online subscription service called EndoThrive to fill the gap in virtual support systems for endometriosis fighters. 

Anna Aleksik, EndoThrive’s community director, said endometriosis can make you feel like a passenger in your own life, while the pain alienates you from other women. She said the growing community of over 100 people empowered her to take the driver’s seat in her life. The opportunity to truly speak up and be heard was an impetus for her emotional healing. 

“I speak to women who have on average four to seven to 10-plus surgeries,” Aleksik said. “I think it’s about time we have a community where warriors can get together and be frank about it. The goal is to thrive and acknowledge that it affects their whole life. It is every part of everything, and we’re not complaining about it, we’re just talking about it. “

Similar to Schlosser, Aleksik experienced two decades of pain before her diagnosis just three years ago. After fertility treatments and numerous doctor offices, she had a hysterectomy through Vital Health. Today, she works with EndoThrive to manage the lingering physical and emotional trauma existing in her body with the hopes of helping others heal along the way. 

“In my experience, and with a lot of women that I speak with who have endometriosis, when you walk into the doctor’s office or when you initially start asking for help, you come from a human perspective of ‘Can you help me out?’” Aleksik said. “It takes you years and a lot of unnecessary medical treatment before you process that they don’t even hear that you’re asking for help. They just see a woman, an emotional woman.”

She later added, “Without a doubt, my life is to prove that sexism does exist within the treatment of endometriosis.”

While the treatment of endometriosis is not one-size-fits-all, doctors and patients alike agree more awareness, education and empathy are key to help diminish the suffering the disease causes individuals and their families. Like Schlosser put it, a woman’s pain should not be desensitized in society. 

“We’re told that pain is normal,” Schlosser said. “You shouldn’t accept it just because the doctor tells you that periods are supposed to be painful. They’re not. To me, one of the worst things we do for women is to tell them that.”

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