A new review article calls attention to the lack of awareness about, unmet needs, and barriers to care in endometriosis, with the goal of improving research, diagnosis, and treatment of the condition.
Drawn up by a working group of patients, clinicians, and researchers brought together by the Society for Women's Health Research in the United States — a national nonprofit that strives to eliminate imbalances in healthcare for women — the article was recently published in the American Journal of Obstetrics and Gynecology.
Basic research needs to be improved, and a better understanding of the pathophysiology of endometriosis could ultimately improve diagnosis and treatment, according to the authors, which large, diverse, well-characterized patient populations will help aid.
But more research funding is needed.
"Right now endometriosis is one of the least funded National Institutes of Health disease categories," senior author Rebecca Nebel, PhD, of the Society for Women's Health Research, Washington, DC, commented to Medscape Medical News.
Delays in diagnosis are common, she explained. On average, women experience a delay of 7 to 12 years from the onset of symptoms until surgical diagnosis, and young women experience the longest delays.
Indeed, "Endometriosis can strike young girls as early as age 8," said Nebel.
In addition, almost three quarters of women with endometriosis are misdiagnosed.
Therefore, a broad range of healthcare providers — from pediatricians to internists to pain specialists and others — need to become better educated and more aware of the condition and "the impact it has on...girls and women," she noted.
"Taking endometriosis out of the shadows is going to help...with disease awareness and education," she continued.
Only Method of Diagnosis Right Now Is Keyhole Surgery
Endometriosis is a systemic, chronic, inflammatory disease in which endometrial-like lesions grow outside the uterus and cause chronic pain. About 200 million women worldwide suffer from the condition, which is estimated to affect about 10% of reproductive-age women.
Common symptoms include painful menstruation, pain during sex, chronic pelvic pain, infertility, back pain, and painful urination or bowel movements.
Some women that have the condition are symptomatic, but for other women, the pain can be debilitating.
The disease places a high burden on women, substantially contributing to healthcare costs and lost productivity.
Yet the public and physicians often trivialize and dismiss symptoms of endometriosis, the review notes, and societal stigma surrounding menstruation is also an obstacle.
Almost 95% of women with endometriosis have other medical problems, and the condition is linked to increased risk for other diseases, including certain cancers, lupus, rheumatoid arthritis, and cardiovascular disease.
Better noninvasive clinical tools are needed to help aid earlier diagnosis and avoid misdiagnoses, say the authors.
There are currently no validated screening questions for endometriosis and the only way to definitively diagnose the condition is with laparoscopy, which not all women can afford or access.
Better Treatment Needed
Another large area of unmet need is treatment. Better options are needed for women who do not tolerate or respond to current therapies and for those who are trying to become pregnant.
According to research cited in the article, 11% to 19% of women report no relief from medication, and most therapies for endometriosis are contraindicated in women trying to conceive.
So treatment can amount to choosing between having a baby and managing the pain of endometriosis.
"Right now the therapies work for some women but not all. So there's definitely a need for new innovative treatments," Nebel stressed.
Meanwhile, up to 50% of patients may experience recurrence of pain after surgical excision of lesions, and about 20% may not show any improvement at all.
Severe endometriosis is also the leading cause of hysterectomy in women aged 30 to 34 years, but even this drastic approach — considered a last-ditch attempt at treatment — may not provide a cure for all women, underscoring the urgent need for better education and management.
"An overall shift towards a more patient-centered multidisciplinary approach with an emphasis on the patient as a whole rather than just treating the pain or the lesions," is vital, Nebel concluded.
One or more authors reports consulting, writing for, advisory board membership, research funding, and/or collaboration for one or more of the following: AbbVie, Myovant Sciences, UpToDate, Forendo, NextGen Jane, Marriott Foundations, Celmatix, Oratel Diagnostics, and/or ObsEva. Abby Norman is the author of "Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain."
Am J Obstet Gynecol. Published online February 18, 2019. Full text
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Cite this: Endometriosis Must Come 'Out of the Shadows': New Review - Medscape - Mar 12, 2019.