SALT LAKE CITY — At first glance, Erin Pack says, it's not clear that she has a condition so agonizing that it can be debilitating.
The 31-year-old West Jordan mother explains she tries to stay physically active, and though she quips her 3-year-old son has "crazy" energy, she's typically able to keep up.
"You would see a healthy 30-something running after a toddler. But if you knew that kind of pain I was experiencing most of the time, it would be pretty shocking," Pack told KSL.
That's because Pack regularly endures searing pain unseen to the naked eye thanks to her struggle with endometriosis, an affliction that exists when tissue that normally grows inside a uterus instead grows outside it, sometimes also spreading to a woman's ovaries or fallopian tubes.
"Since my illness is invisible and you can't see it, you may think I'm faking it, or exaggerating. That's kind of the struggle," Pack said. "You just can't tell whether someone has it."
On top of that, discussing endometriosis — which frequently causes the most pain during a woman's menstrual period — is "kind of a taboo," she said.
"You're dealing with menstruation, which a lot of people don't want to talk about, no matter what frame of reference you're in."
In an attempt to shine an as-yet elusive public spotlight on the suffering experienced by Pack and the millions of other women who have endometriosis, as well as the difficulties of diagnosing and treating it, advocates late last month unveiled a new public health campaign called Endo What.
The launch included a promotional video message from Sen. Orrin Hatch, R-Utah, and Sen. Elizabeth Warren, D-Mass., who both said more needs to be done to understand and treat the condition.
Shannon Cohn, co-founder of the organization based in Washington, D.C., told KSL that an estimated 1 in 10 women suffer from endometriosis and that it is responsible for as many as half of all cases of infertility problems in women. However, the country's medical community is "woefully behind on adequately educating our doctors" about it, she said.
"It's a disease where there are more questions than answers," Cohn said.
A lack of progress in understanding the disorder means treatments for endometriosis largely "just manage symptoms" rather than addressing the potential underlying causes, for which the research is still inconclusive, Cohn said.
The Mayo Clinic says that in addition to extreme menstrual pain and some cases of heavy bleeding, as well as infertility in approximately one-third to half of women with endometriosis, symptoms can include pain accompanying bowel movements, excessive tiredness, diarrhea or constipation.
Delay in diagnosis
An official diagnosis for endometriosis is only obtainable via laparoscopic surgery. Because finding a sure diagnosis involves an invasive procedure, women visit an average of eight doctors over 10 years for their symptoms before they have clarity about what they are suffering from, Cohn said, citing National Institutes of Health research.
"(Researchers) are trying to find a noninvasive diagnostic tool, and when that happens it's going to be revolutionary," Cohn said.
But as things stand now, the pain from long-term undiagnosed and untreated endometriosis can be particularly devastating to the patient's lifestyle, she said, costing what researchers have estimated to be 11 hours' worth per week of productivity.
"Practically speaking, it just holds them back," Cohn said. "I would say this is a disease of lost potential."
Oftentimes, endometriosis patients become symptomatic in their teens, she said, making the pain especially debilitating for adolescent girls trying to start their life out on the right foot and become productive adults.
Since my illness is invisible and you can't see it, you may think I'm faking it, or exaggerating. That's kind of the struggle. You just can't tell whether someone has it.
When Cohn herself began feeling painful symptoms herself as a teenager, she says she was told what she was feeling was par for the course for menstrual pain. She remembers thinking, "The doctors are telling me this is normal — (but) how is this normal?"
"I was like, wait a minute, I had so much pain that I had to lie down on the bathroom floor. This is not normal," she recalls.
Confusion over the effects of endometriosis as compared to the typical pain of a menstrual period means it's "easy for people to discount it," Pack said. She added that "we're told all the time, 'You need to suck it up (or) you're being kind of weak about it.'"
"Due to misinformation and outdated notions, girls are often told the symptoms are normal or in their heads," Warren said in her and Hatch's promotional video for Endo What. "When they do seek medical help, they are often given options that may be ineffective or have really severe side effects."
Pack first started experiencing symptoms when she was 15, but didn't get diagnosed until her late 20s.
"It's been an issue of people kind of discounting your pain, and saying cramps are normal," Pack said. "It's a battle, not just recognizing the symptoms, but actually getting diagnosed. It can take a long time."
Before Pack gave birth to her son, she had suffered a miscarriage that her doctor attributed to endometriosis. In the aftermath of that, and throughout her suffering from symptoms, "my friends and family have been incredible, very understanding" and compassionate,” Pack told KSL.
Still, "On kind of a broader level, I'd like to see more general education and more empathy about the condition," she said.
Hatch said in the senators' video for Endo What that one of his granddaughters has been affected by endometriosis and that he and his family have "witnessed firsthand the crippling effects."
"It's a disease so important that it (has) cause for all of us to join forces to work to solve it," Hatch said. "For too many, the barriers to good care are restrictive and we must do better."
Cohn said the Endo What campaign will focus on catching eyeballs via the release of various celebrity and athlete messages in the coming months, and will eventually release a second film all about the disease, to add to a 2015 movie she directed which was also named "Endo What?"
The campaign hopes to seek corporate sponsors to sustain its educational efforts, but plans to stay away from potential sponsors who are "in the health care space," particularly the pharmaceutical industry, Cohn said, as a way to avoid "a conflict of interest" in the information promoted.