March is recognized as Endometriosis Awareness Month around the world. Endometriosis, a whole-body chronic illness, affects millions of women worldwide, including many members of the Flagstaff community. Students agreed that the disease affects their daily activities and quality of life.
First-year graduate student Sarah-Grace Crocco has been living with endometriosis since high school. She explained that it is a whole-body disease where tissue similar to the lining of the uterus grows outside of it.
Crocco said the tissue produces its own estrogen and can grow in multiple locations in the body. Specifically, endometrial tissue can grow on the reproductive organs, bowels and even on the lungs.
First-year graduate student Mary Laffidy is being treated for symptoms of endometriosis as well. However, she has been unable to receive a definitive diagnosis due to how difficult it can be to obtain one.
“Sadly, the only way it can be confirmed is by surgically going in and seeing the fibroids,” Laffidy said.
Although endometriosis has no cure, Crocco said there are treatment options available to manage symptoms. However, she said treatments come in a limited range due to the lack of research surrounding the condition, even though one in 10 women have endometriosis, according to endometriosis.org.
“The best option in terms of what’s effective is something called excision surgery,” Crocco said. “There’s only like 100 gynecological surgeons in the country who practice that. So, it’s pretty inaccessible.”
As surgery is out of reach for many with the disease, Crocco said she and others use birth control pills to regulate estrogen levels. This can be effective in managing symptoms because estrogen feeds the growth of endometrial tissue.
Over the course of several years, Crocco has had three surgeries for endometriosis. She said her first surgery was performed under emergency conditions, as the tissue had caused her ovary to twist. During this surgery, the tissue was burned off rather than cut out, which damaged her reproductive system.
After her first surgery, Crocco received a second in Chicago. She said a similar approach was taken during this surgery, which ultimately led to an infection that left her in a hospital for a month.
While many local residents have only experienced women’s health care in the United States, Crocco has received treatment for the illness in Spain as well. Following the infection, Crocco eventually went in for a third surgery. She had been studying abroad in Spain and received the treatment there. She described her experience overseas as "incredibly different."
Crocco’s surgeon used the excision technique to cut out endometrial tissue, a procedure she said is the gold standard. Crocco said she has never experienced a better quality of life than after her third surgery.
“I was back on my feet in a week versus in the states I had these horrible experiences,” Crocco said. “My surgeon in Spain even told me, 'Most of the work that I had to do wasn’t even the endometriosis. I had to repair a lot of the burning and adhesions that other surgeons have done.’”
Endometriosis can also cause a multitude of symptoms. Crocco and Laffidy said symptoms can include debilitating pelvic pain, pain during sex, gastrointestinal issues, vomiting and severe bloating. Additionally, the adhesions caused by endometriosis cause inflammation throughout the body.
For Laffidy, severe bloating was her first indication of endometriosis. She said she knew something was wrong when her symptoms started to occur outside of ovulation and menstruation.
“I cannot describe the cramping because I’ve never felt anything like it to compare it to, but I almost imagine there’s hands around my ovaries just squeezing them,” Laffidy said. “That’s how intense the cramping is. You can’t move and it just stops you in your tracks.”
Pain management has been difficult for Laffidy, as over the counter painkillers and more holistic methods like CBD have been unsuccessful. She avoids stronger medications like opioids due to their addictive nature but gets frustrated because her symptoms make daily activities difficult to manage.
Similarly, Crocco said her pain is confusing at times. Prior to her diagnosis, Crocco did not understand why she couldn't do as much as other people her age.
“Most of the time, I would just spend the day curled up on my bathroom floor, vomiting from the pain," Crocco said. "It was that severe and intense, not being able to move out of an infant's position. If that lasted one or two days, that meant I didn’t go to class for one or two days a month.”
Laffidy said one of the most difficult aspects of her condition is the inability to fully understand what is going on in her body. She said doctors have told her she is simply going to live the rest of her life in pain, which she found appalling.
Freshman Andrew Henning maintains a close friendship with a woman afflicted with endometriosis. He said he is still learning about the disease through what his friend tells him and her experiences.
Henning said the symptoms of endometriosis have impacted his friend’s school life, as she often has to miss class due to pain. In addition to her education, he said her dating life has also been impacted significantly.
“She goes on dates and it’s going well and then she says, ‘I can’t have sex because it’s painful’ and then they leave her,” Henning said.
As one of the symptoms of endometriosis is pain with sex, some women might encounter issues in their romantic relationships. According to WebMD, two-thirds of women with the disease experience some form of pain with intercourse. The amount of discomfort depends on the location of the endometrial tissue. More pain has been associated with tissue located on the lower uterus, which can be stretched and pulled causing irritation.
Both Crocco and Laffidy explained they have to be cautious of certain foods to avoid additional inflammation. Specifically, both have cut dairy and gluten out of their diets almost entirely.
Crocco said food sensitivities and other gastrointestinal issues are commonly linked to endometriosis. However, she explained these symptoms are often overlooked.
“You tell people you have endometriosis and then they Google it, and the definition is painful periods and sometimes painful sex,” Crocco said. “I wish it was just those two instances and not like if I eat a certain food I'm going to be so inflamed that I look like I’m in my first trimester of pregnancy.”
Along with the issues of symptoms and treatment, an article published by the Endometriosis Foundation of America said endometriosis research is funded only one research dollar per woman affected by the chronic illness. Crocco said this underfunding is a big issue.
“The cost associated with treating the disease is probably one of the more psychologically enduring things about it because at the time I had the surgery, I was actually uninsured,” Crocco said.
Almost two years after her first surgery, Crocco said she is still paying the hospital on a monthly basis. She said the overall cost was thousands of dollars, which she was unable to pay. Crocco said she has to consider costs due to her illness when budgeting, unlike her peers.
An additional cost Crocco has encountered is co-pay fees for doctor’s appointments, which are required even with insurance. She said she has often had to find several doctors after moving to a new state to make sure she can get the proper medication and care she needs.
Laffidy said there is a lack of awareness and knowledge among the medical community, which can make endometriosis that much more difficult to live with.
While the disease is centered around the female reproductive system, Crocco emphasized the importance of rebranding endometriosis as a full-body illness. She explained it is often overlooked because people do not trust women when advocating for their health.
“It’s still one of the most underfunded chronic illnesses in this country,” Crocco said. “If 10% of men were all having a similar chronic illness, we would’ve had a cure, a scholarship fund, support groups and marathons all over the country.”
Crocco said women with endometriosis struggle to receive proper treatment due to a lack of knowledge among medical professionals. In her case, she was examined by multiple doctors who all told her nothing was wrong.
One of the hardest parts of dealing with a chronic illness is the mental toll it has taken on Crocco. She said her chronic pain is exhausting and prevents her from doing what she would like to on a daily basis.
After doctors and other people in her life said everything was in her head, Crocco said she started to believe them. She said she felt crazy without an explanation for her symptoms.
“There was a lot of dismissive language around it,” Crocco said. “As it progressed and got worse, the same family doctor even suggested that I was making it up because I didn’t want to go to school.”
While awareness is a problem among the medical field, Henning said there is also a lack of awareness among the general population. He said he had never heard of the disease prior to his friend explaining it to him. Further, Henning said due to how common and severe the illness is, it is imperative it receives more funding for research.
Crocco said progress in endometriosis research can only be made if the disease is taken as seriously as it should be. She said it is important for people to believe women when they say they are in pain.
“If you know someone who has endometriosis, be more understanding of them,” Laffidy said. “Chronic illness is a horrible thing. It takes over our lives in so many ways. So, just be understanding of that.”
Laffidy said people are often uncomfortable talking about endometriosis because it is related to women’s health. Crocco explained it is essential to restructure the health care system and politics to make endometriosis part of the conversation.
Although it is important to see a doctor, Laffidy said it is crucial for everyone to do their own research and figure out what may be going on in their body. She said chronic illnesses like endometriosis should not be something people just have to cope with.
“It affects a lot of women and not a lot of people know about it,” Henning said.
Henning said Endometriosis Awareness Month is important not only to women who suffer from the disease but also for the general public. Laffidy emphasized that people need to advocate for themselves if they are experiencing symptoms of endometriosis. To learn more about the disease and awareness, visit SpeakEndo’s website.
Editors note: This story has been updated from the original version for corrections. The original version had Mary Laffidy and Sarah-Grace Crocco as freshmen when they are actually first-year graduate students. The story has been updated to reflect this information accurately.