At 38 years old, Melissa Dean has had eight surgeries for endometriosis, including a complete hysterectomy, and she expects she’ll need a ninth.
“Endometriosis is a beast,” Dean said. “It behaves like cancer but doesn’t actually kill you. It kills you, though, in every other way. I wouldn’t wish it on anyone.”
That’s why Dean is determined not just to win her battle but to help others with the disease win theirs.
Dean is organizing her first “Endo Warrior 5K Run” to benefit EndoFound. It will be at 8 A.M. on Saturday, March 29, at Wheeler Farm in Murray, Utah, eight miles south of Salt Lake City. The cost to participate is $25 and will include a hydration station, a physical therapist on site with information about pelvic floor therapy, and a post-race breakfast of pancakes and fruit. The scenic course will wind through the farm and past animals.
“It should be a fun and informative place to get educated about endometriosis, and a good social event to talk to others about the disease and learn about support services,” Dean said.
Dean suffered from pain and heavy periods beginning in sixth grade.
“Not until I was 22 and married to my first husband did I seek out care to figure out what was going on. I was having such horrible pain during intercourse and my periods,” Dean said. “I went to two or three OBGYNS who gave me the same story that so many women with endometriosis hear—it was just a bad period, and I needed to pop a Tylenol and would be fine. But no, I wasn’t fine.”
The first doctor who finally listened to Dean did exploratory surgery and discovered she had endometriosis.
“It was kind of a sigh of relief to know what was causing my symptoms, but at the same time, I thought, Oh no,” Dean recalled. “My cousin had endometriosis and had told me about everything she’d been through.”
That was the first of eight surgeries for Dean. She’d have seven more over the next fifteen years while also spending significant time and money on fertility treatments and other methods to try to have a child. At 29, when nothing had worked, Dean decided to have her uterus removed despite her husband’s objections.
“I couldn’t function anymore,” Dean said. “I wanted to finish school. I wanted to do all kinds of things that endometriosis was inhibiting. Most of all, I just wanted my quality of life back.”
She and her husband divorced a year later.
“I’m part of a couple of support groups on Facebook, and I see women all the time on there say they haven’t had sex in so long because of the pain, and their boyfriend or husband is upset and wants to break up or divorce,” Dean said. “It’s so sad that endo does this, and effects like this are not discussed nearly enough.”
Dean had the rest of her reproductive organs removed three years ago, but not much has changed.
“The pain has come back, and I just went to a new specialist who thinks the endo has returned,” Dean said. “I feel better working with him than with any doctor I’ve seen in the last 15 years, so I’m hopeful.”
One aspect of Dean’s life that has changed for the better is that she’s remarried.
“There I was, a 30-year-old woman with no uterus getting back into the dating world. I was so relieved when I found this man,” Dean said of her husband today, whom she’s been married to for seven years. “He’d dated other women with endometriosis and had no interest in having kids. He understands endometriosis and is a huge blessing in my life.”
Dean works in an OBGYN clinic as a patient service representative. She schedules appointments, answers patient phone calls, and sends messages to nurses. But her favorite part of her job is serving as an advocate for patients to nurses and other healthcare providers—something she said is desperately needed, especially for those with endometriosis who feel they don’t have a voice.
“One in 10 women have this disease,” Dean said. “Doctors are doing what they can do, but it’s not enough. It takes far too long to diagnose, and the treatments out there today are not enough.”
That’s what led her to organize this fundraiser.
“I’m trying to get the biggest response I can muster,” Dean said. “I would love to see hundreds of people there and raise several thousand dollars.”
Wheeler Farm is at 6351 S 900 E in Murray, Utah. To register for the race or to donate, visit https://give.endofound.org/event/endowarrior-utah-5k/e661231. You can also donate using the QR code.
*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
