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'I was dismissed. Called a liar': 4 women detail emotional toll of endometriosis

While these women admit that their experience with endometriosis has been difficult, they feel it is important to speak out to help others with it.
/ Source: TODAY

This story discusses suicide. If you or someone you know is at risk of suicide please call the U.S. National Suicide Prevention Lifeline at 800-273-8255, text HOME to 741741 or go to SpeakingOfSuicide.com/resources for additional resources.

Christy Reyes loved running. Even after she experienced ruptured cysts because of endometriosis, she continued lacing up her sneakers. During a half-marathon in 2014, a cyst ruptured. Still, she completed the race in excruciating pain.

“I finished, covered in blood, but I finished,” the 38-year-old from Hanover, Maryland, told TODAY. “My parents were very angry with me that I did it. But I’m just a hard head. I push until I can’t anymore. I hate hate hearing someone tell me … 'your disease is holding you back.'”

Christy Reyes has grappled with endometriosis since her 20s. She feels it is important to share her story to raise awareness and to help others feel less alone. Courtesy Christy Reyes

As the years went by her endometriosis stopped her from enjoying some of the things she loves. Over the past four years, she’s been to the emergency room with extreme pain from ruptured cysts about six times. Some days, she struggled to walk. She recently had a surgery, which helped, but she has loads of extra medical bills, adding more stress.

“It makes you feel like a weak person and you know you’re not,” she said. “It’s extremely frustrating and sad when you have girlfriends and everyone wants to go out and you’re like, ‘I’m sorry guys. I really don’t feel well’ and everybody’s like ‘Oh it’s just your period. It’s not that big of a deal.’”

Since her last surgery for endometriosis this summer, Christy Reyes has experienced less pain and bleeding. Still, she has some bad days.Courtesy Christy Reyes

Reyes has had four surgeries, numerous emergency room visits and days where the pain felt so intense she couldn’t get off the floor. Living with endometriosis affects her mental health. Sometimes she feels frustrated and has experienced depression.

“I have had really dark moments when I thought about wanting to kill myself. But I’m not that kind of person. I’m the happiest person,” she said. “It’s just those dark moments. You just don’t feel them coming and then they happen.”

Endometriosis and mental health

Endometriosis occurs when uterine tissue grows outside the uterus. According to the U.S. Department of Health & Human Services Office on Women’s Health it impacts more than 11% of women between 15 and 44 in the United States. Symptoms include pelvic pain, heavy periods, spotting, infertility and stomach ailments. It takes an average of seven to 10 years for most to be diagnosed. There is no way to diagnose endometriosis without surgery and many people spend years being dismissed. Currently, there is no cure for it.

Experts say research on endometriosis remains scarce, but a few recent studies have shown a relationship between the painful, chronic condition and mental illness.

“The real research has yet to be done,” Christine Metz, a professor at the Feinstein Institutes for Medical Research in Manhasset, New York, told TODAY. “It is very complex. But there are many cases where (we wonder) does depression, anxiety and emotional distress lead to an increased perception of pain … Or does pain that is dismissed and prolonged lead to the psychological distress?”

Ashley Cawood had a history of endometriosis in her family yet she still felt dismissed when she sought help for her pain and bleeding. Courtesy Ashley Cawood

Metz is involved in a research study called ROSE looking at ways to diagnose endometriosis without surgery by using menstrual fluid to detect it. Faster and less invasive diagnosis could make a huge difference for many who suffer for years before understanding the reason for their illness. A 2017 paper showed that the agony of endometriosis contributes to depression and anxiety.

“There is research that has been done with women with chronic pelvic pain and 86% of those women have depression, whereas women without chronic pain 38% have depression,” Metz said.

Ashley Cawood knew about endometriosis because many women in her mother’s family had it and her father had a relative that died by suicide after grappling with endometriosis. Cawood’s periods were always painful and heavy and she missed so many days of school that she eventually was home-schooled. Even knowing that there was a family history of endometriosis didn’t help her receive treatment any earlier.

I have been told by the medical community that I’m faking it. It’s psychosomatic. I’m sensitive. I’m seeking drugs …

Ashley Cawood

“I was dismissed. Called a liar. The physical symptoms alone can do you in but with the isolation and loneliness and delayed diagnosis (it’s even harder),” the 33-year-old from Bloomington, Illinois, told TODAY. “I have been told by the medical community that I’m faking it. It’s psychosomatic. I’m sensitive. I’m seeking drugs … It causes tremendous psychological trauma and torment.”

A delayed diagnosis and being dismissed likely contributes to worsened mental health.

“Those patients are obviously looking for validation,” Dr. Ted Lee, director of minimally invasive gynecologic surgery at UPMC Magee-Womens Hospital in Pittsburgh, told TODAY. “If you have been misdiagnosed and undiagnosed for many years you certainly can become very frustrated and depressed because nobody believes that you do have pain.”

While Ashley Cawood experiences many bad days from endometriosis, she feels happy to have a beautiful family and supportive spouse. She's become an advocate to help others with endometriosis. Courtesy Ashley Cawood

Amy Courtney, 36, of Las Vegas, learned she had endometriosis when she was a sophomore in high school after collapsing and being rushed to the emergency room. While doctors first believed she had a ruptured appendix a female doctor suggested endometriosis. Within a month she had her first of 15 surgeries to help manage it. Still, she struggled to find appropriate care.

“It's hard when you're always called neurotic by so many people … I have so much anxiety and depression,” she told TODAY. “I never know what the next day is like. If I feel great right now, that's amazing. I need to take full advantage of it because I don't know what it's going to look like in five hours.”

Courtney said feeling so ill and having so many surgeries is unfair to her husband and children. That guilt is common among endometriosis sufferers, noted Noémie Elhadad, who leads an endometriosis-based research project called Phendo at Columbia University in New York. The project asks people with endometriosis to track their symptoms daily for several months to help provide a more robust definition of the condition.

“There’s a lot of grief,” the professor of biomedical informatics told TODAY. “They feel like their life would have been different if they had been healthy. Also, because infertility is such a big deal in the endometriosis community, there is grief about problems around conceiving and being unable to conceive.”

Amy Courtney runs a local support group for people with endometriosis and she hopes to teach her daughters about it so they'll know what pain is normal with periods and what could be a sign of something more. Courtesy Amy Courtney

Sarah Hillstead has endometriosis that has spread to her heart and her lungs. The 42-year-old has never been on a date, in part, because she knew she could never have children. In 2002, she had a hysterectomy at only 22 years old. Two years later doctors removed her ovaries.

“It was a matter of life and death,” she told TODAY. “I was extremely young and I kind of had no choice in the matter. If I could go back in time to when I was first diagnosed, knowing what I know now, I would definitely do things differently.”

When Sarah Hillstead was just 22, she had a hysterectomy and two years later she had her ovaries removed. She has endometriosis throughout her body, including her lungs and heart. Courtesy Sarah Hillstead

While she wishes she had known how to better advocate for herself, she doesn’t want others to suffer alone.

“Please reach out to people. Reach out to your family, your friends,” she said. “There is help.”

Raising awareness and supporting people with endometriosis

Lee is one of several minimally invasive surgeons at UPMC Magee’s new Chronic Pelvic Pain and Endometriosis Center, which offers a more holistic approach to the condition. Patients have access to gynecologists along with psychologists, psychiatrists and physical therapists. He says that surgeons need to pay more attention to the patients’ mental well-being before surgery. That’s where Ann Wilder comes in — she’s a behavioral health expert who works with patients with endometriosis and pelvic pain. Often, people feel grateful to be able to talk about what they’re experiencing, which is often considered “taboo.”

“We just don't talk about things like menses and infertility or painful sex,” she told TODAY. “There's a privacy and a silent suffering involved where women can hold on to those painful experiences for a long period of time and not even realize that there's something that can be done about it."

People with endometriosis often have to have multiple surgeries to remove the cysts and lesions and Ashley Cawood is no exception. Courtesy Ashley Cawood

While experts might recommend therapy, medication and pelvic floor physical therapy, they also recommend holistic approaches such as yoga or acupuncture. Reyes has found that acupuncture works for her, though it’s often hard to schedule. But she is feeling much better since her last surgery. Both Cawood and Courtney had hysterectomies because of adenomyosis, a painful condition of the uterus.

Sharing their stories is important because they want to help others with endometriosis. And they all stress that they live wonderful lives that aren’t just about pain and illness. Both Cawood and Courtney have children and feel grateful they could have families.

Amy Courtney hopes that people understand that endometriosis is more than just bad periods. It's a condition that can affect the entire body.

Cawood advocates regularly for people with endometriosis and participates regularly in the Worldwide EndoMarch, an organization focused on endometriosis advocacy. She also helps the American End of Endo Project, which just launched its Yellow Ribbon Pages, aiming to help people raise money so they can seek care from endometriosis experts for excision of cysts, which is considered the gold standard treatment.

“It’s really great. It’s going to help a lot of women,” she said. “We need to get allies on our side.”