“It’s not in their head. It’s a real disease.” Faculty hope to raise awareness about endometriosis
It’s a painful, chronic disease that affects millions of women worldwide, but many don’t even know they have it.
“It’s a real disease and it’s important not to blow off their symptoms as being normal menstrual cramps,” said Shannon Hawkins, PhD, MD, a faculty researcher with Indiana University School of Medicine Department of Obstetrics and Gynecology and vice president for translational research for the Endometriosis Association. “There’s a point where it’s not normal.”
Endometriosis occurs when the lining of the uterus implants on other parts of the body, such as the bladder or bowels. It causes women to have extremely painful menstrual cycles. The symptoms can be varied depending on where the lining implants, but could include severe pelvic pain, nausea, diarrhea, constipation and more. In addition to these symptoms showing up during a woman’s monthly menstrual period, endometriosis can also lead to other health concerns, such as infertility or even some cancers.
Despite the potentially long list of symptoms a woman may have, getting an official diagnosis of endometriosis is extremely difficult.
“It is generally diagnosed with surgery, by getting a biopsy and seeing that this biopsy we took from somewhere that is not the uterus is uterus tissue,” said Katie McHugh, MD, also a faculty member with IU School of Medicine Department of Obstetrics and Gynecology. “The trouble is that sometimes we will do surgery and not see anything or only find one tiny spot, but the patient is experiencing tons of pain and lots of symptoms. Then other times, the patient has only a little bit of pain, but the tissue is everywhere, so it doesn’t always correlate.”
If a patient is officially diagnosed with endometriosis, treatment options could include hormone therapy, such as birth control pills or an intrauterine device (IUD), pain management with medications like Tylenol or Ibuprofen, or surgery. But those options can be limiting, especially for women who want to get pregnant.
“Fertility is something that can’t be taken for granted, and the ability to get pregnant is something that matters differently to different people,” McHugh said. “As a clinician, it’s important for me to constantly be asking about where that person is so that I’m treating her goals appropriately and prioritizing her life’s plans in conjunction with my treatment plans.”
Another barrier to women getting treatment for endometriosis is there are often misconceptions surrounding the disease and people who may have it.
“They hear people say things like, ‘It’s just a period. Nobody else has this problem. Why are you in bed for a week every month?’ But this is not just painful periods. It’s a whole collection of symptoms and problems,” McHugh said. “I think it’s really important that women are not told that pain is normal, because it’s not.”
McHugh encourages women experiencing painful symptoms to talk to a doctor and find a support system.
“What is really important for women is to know they are not alone. They’re not the only ones who have ever gone through something like this or who have had these symptoms,” McHugh said. “There are other people who have these life experiences that they can share in different communities, like some online groups, and can feel supported.”
McHugh and Hawkins also encourage people to learn about the need for more research so women can have better diagnoses and treatment options. Faculty in the Department of Obstetrics and Gynecology are researching ways to diagnose women sooner, so they are not experiencing undiagnosed symptoms for years. They’re also working to develop new treatment options and surgical techniques for women with endometriosis. Testing those techniques starts with developing a model of endometriosis that mimics how the cells function. That’s what the Hawkins Laboratory is trying to create using three-dimensional bioprinting.
“The models could give us new targets that are not based on hormone therapy as well as offer opportunities to test other therapies,” Hawkins said.
As research continues, Hawkins and McHugh said their biggest message for women is to know that symptoms are worth talking about.
“Women with endometriosis aren’t crazy. It’s not in their head,” Hawkins said. “It is a real disease that has real pathologic findings.”
“You are not alone,” McHugh said. “It’s a challenge that you should approach with your doctor and you should approach it as a team with the expectation that you will get better, that you will improve and that you will have a normal life.”