If you suffer from endometriosis, aka “endo”— an inflammatory condition in which cells that resemble those in the endometrium (the lining of the uterus) are found outside of the uterus — you know how frustrating and isolating it can be. About 1 in 10 people assigned female at birth are affected by endo, and most struggle with symptoms for years before a healthcare provider puts the pieces of the puzzle together.
“Average time to diagnose for endo is over 10 years, and I’ve seen patients for whom it took 15 or 20 plus years,” says Dr. Laurence Orbuch, a California-based OB-GYN who specializes in minimally invasive surgery for endometriosis and who takes a holistic, integrative approach to helping patients heal. Why does diagnosis take so long? “Endo is a condition that’s as prevalent as diabetes and given about as much attention as a hangnail,” Dr. Orbuch explains. “The general knowledge and awareness of endo among physicians and other clinicians is inadequate and frequently antiquated.”
But there's good reason to be hopeful — in recent years, the US has taken steps to invest more in endometriosis research. In 2020, former Rep. Abby Finkenauer led the charge to double the funding for endometriosis research — and in March of this year, the Senate passed legislation that would funnel resources into two of the primary programs that, in turn, fund endometriosis research.
As we (hopefully) continue to spend more on endometriosis studies, an obvious and important area to investigate is treatment. “Surgery remains the cornerstone of treatment: removing the diseased tissue,” says Dr. Orbuch. Researchers are also exploring options for treating the symptoms of endometriosis — debilitating period pain is the most common — and that’s where we’re seeing the most exciting developments.
Physical therapy and endometriosis
At Origin, we’re especially excited about a 2021 randomized controlled trial (or RCT, aka the “gold star” clinical research method) on pelvic floor therapy for endometriosis. Although specialists like Dr. Orbuch have long recommended pelvic floor therapy as an effective tool for managing certain aspects of pain from endometriosis, especially before surgery, this is the first RCT to clinically validate what we already knew from practice (and observational research).
In the study, pelvic floor physical therapy was found to be a “promising new treatment” for improving pelvic floor relaxation, superficial dyspareunia (when pain around the vaginal opening is felt during sex) as well as chronic pelvic pain in people with deep infiltrating endometriosis — or endometriosis that’s found deep (more than 5 millimeters) within tissues or organs.
“Physical therapists, especially pelvic floor physical therapists, tend to understand the nuances of endometriosis and are more in tune with what’s going on with pain and inflammation than most OB-GYN docs,” adds Dr. Orbuch. “I think it’s because they see firsthand the effects that endo has on women’s bodies.”
Self-care COUNSELING and endometriosis
In August of 2020, researchers published results from an RCT that looked at the impact of self-care group counseling on the quality of life for people with endometriosis. In the study, the self-care practice the researchers counseled on encompassed physical aspects (e.g., exercise, nutrition), psychological aspects (e.g., leisure time, life enjoyment), social aspects (e.g., social outings, friendships), and spiritual aspects, as well as medication and non-pharmacological symptom management.
The researchers found that, in the 76 participants with endometriosis, the “mean score of quality of life,” or the average scores on questionnaires related to quality of life for physical and mental health, was significantly higher for those who underwent group self-care counseling as compared to those who didn’t.
Why does this matter? As Dr. Orbuch explains it, the physical symptoms of endometriosis can have a serious effect on mental health. Chronic pain may “lead to issues with mood, anxiety, and depression because the brain is being overloaded with pain signals,” he says. “Over time, the patient can become chronically exhausted, to the point of complete inertia. They don’t want to do anything because everything feels like such a chore or effort.” This research highlights self-care counseling as an effective way to change that.
A possible new target for endometriosis treatment
An interesting paper published in 2021 is more about a new possibility for endometriosis treatment rather than a proven-effective intervention. Researchers have identified the gene NPSR1 as a potential target for nonhormonal treatment for endometriosis. In endometriosis mouse models, blocking NPSR1’s signals reduced both pain and inflammation. While we need research in actual humans with endometriosis to know for sure if this could really help treat symptoms, the possibility of a nonhormonal option is appealing.
Typically, the medications prescribed to treat endometriosis symptoms are hormonal because the condition is estrogen-dependent. “Some doctors will put patients on the birth control pill in an attempt to stop the cyclical ups and downs of endo and minimize some of the symptoms, but this doesn’t solve the problem,” says Dr. Orbuch. “Worse, they may give them medications that cause chemically induced menopause.” The problem with the latter medication, called gonadotropin-releasing hormone (GnRH) agonists and antagonists, is that side effects can be so severe that it’s only recommended as a short-term solution (unless “add-back” hormonal therapy is also prescribed to offset them).
What’s next in endometriosis treatment?
A search of current endometriosis clinical trials shows many more hormonal medications are on the horizon. But that doesn’t mean there isn’t more coming. One promising clinical trial is recruiting participants to explore how efficacious (that’s effectiveness in a clinical trial setting versus the real world) and cost-effective yoga, cognitive-behavioral therapy, and education are for improved quality of life and other biopsychosocial outcomes among people with endometriosis. Like the early findings in the mouse trials mentioned in the last section, it’s exciting to see researchers focus on diverse treatments that could help patients with very different needs and resources.
If you’re experiencing endometriosis-related pelvic pain, you don’t have to wait to feel better. Learn how Origin pelvic floor physical therapists may be able to help you manage your symptoms.