Doctors are often unfamiliar with endometriosis and challenged in diagnosing and treating women with this disease, while patients are frustrated by its physical and emotional toll and by limited treatment options, a study based on surveys and interviews with these two groups reported.
The study, “Shedding light on endometriosis: Patient and provider perspectives on a challenging disease,” was published in the Journal of Endometriosis and Pelvic Pain Disorders.
Endometriosis, a serious and painful condition, affects an estimated 1 in 10 women — about 176 million in total worldwide — and is often misdiagnosed or given a delayed diagnosis. This leads to unnecessary and incorrect treatments, as well as high costs to both patients and the healthcare system.
Researchers at Thomas Jefferson University in Pennsylvania assessed perceptions of endometriosis among healthcare providers, and the experiences of people with endometriosis in the United States.
They first surveyed healthcare providers — many obstetricians-gynecologists — to determine their understanding of the disease’s prevalence. Of the 53 doctors who completed the survey, only six (11%) accurately identified that endometriosis has a prevalence of 1 in 10.
Four providers also participated in short, open-ended interviews about treating patients with or suspected of having endometriosis. Several themes emerged during these interviews.
In particular, doctors felt they had limited training with regard to this disease. In fact, they mentioned that its causes or diagnosis was not covered in their clinical training, likely because it is considered a “benign” condition.
These healthcare providers agreed that because symptoms of endometriosis can vary widely, its diagnosis and management can be challenging. A multidisciplinary team involved in a patient’s diagnostic steps and treatment plan is crucial.
“Endometriosis can be a hard diagnosis to land on because definitive diagnosis really does require surgery and we would want to spare our patients that if it wasn’t totally necessary,” one doctor said.
Other provider themes, beyond limited training and need for a collaborative approach, included difficulties in diagnosing endometriosis due to a need for imaging and surgery, and “unspecified” pelvic pain; challenges in patients being referred to a specialist for this disease, and the complexities of establishing open communication with patients and being able to get an “accurate patient history.”
“There are so many entry points for a woman with pelvic pain that it might be hard to get everyone on the same page without having some sort of … multi-specialty group of guidelines,” another doctor said.
Twelve women, with a mean age of 32, were also interviewed about their experiences with endometriosis. A major had a confirmed (16%, 2 patients) or suspected (41%, 5) family history of this disease.
Patients spoke about the psychological aspect of the disease, with pain, misdiagnoses, and limited treatment options having a significant impact on their mental health.
“I was honestly afraid of having a surgery only to be told, ‘it’s not endometriosis, just deal with it, we all have cramps,’” one woman said.
“I do not feel that I have trust, unfortunately, in any doctors because of the path that I’ve been on … I couldn’t function, I needed help. And to have to get to that point is discouraging,” said another.
Patients also talked about struggling to get doctors to understand their needs, and feeling frustrated with the healthcare system overall, particularly as many healthcare providers lacked a general awareness of the disease and did not know how to properly manage it.
Financial difficulties due to their disease were also reported, ranging from how the disease affects their employment status to the costs of different treatment options.
Patients also expressed their frustration about the lack of non-surgical treatments aside from hormonal therapy, which many do not want. Six of the 12 women had had at least one surgery for their endometriosis, and two had as many as six.
“Whether participants opposed taking hormonal therapy on account of preference, side effects, or fertility concerns, most expressed strong dislike and frustration in knowing that it remains one of the main treatment options,” the researchers wrote, noting a lack of treatment options “despite the high prevalence of the disease.”
“[M]y biggest concern is what I’m going to do next, because it doesn’t really seem like there are other options besides doing another surgery, and then if it grows back after that, it seems like a really long process of going through these cycles,” one woman said.
Patients also struggled extensively with fertility problems, and many had to make time-consuming and costly decisions to have a child, like using in vitro fertilization.
The researchers concluded that healthcare providers “are frequently unfamiliar with the far-reaching scope of endometriosis, and cite many challenges caring for patients with the disease.
“Patients equally find the disease challenging to live with as it encroaches on physical, mental, and emotional well-being,” they added.
Their study, they wrote, highlights a real need for a “multi-specialty group of guidelines for … advancing the overall standards of care related to endometriosis,” and for making more and better treatment options available to patients.