Yesterday in the New York Times endometriosis patient Sindha Agha (not my patient) wrote a thought-provoking op-ed about her adventures in pharmaceutical hormone treatment for her endometriosis. What struck me the most about her accounts was the repetitive nature of hormones the care providers she saw offered. Over and over they offered her palliative treatments to her disease, with no thought to side effects or to an effective patient outcome. While Agha rightly was careful not to demonize birth control, what we are really talking about here is not birth control but treatment options for a disease than strike as many women as diabetes in their prime years, often rendering them with chronic, debilitating pain and organ dysfunction.
As a physician who treats endometriosis patients with wide excision surgical therapy, this makes me so sad. The fact that here we are more than twenty-five years after wide excision was pioneered, numerous clinical, peer-reviewed publications demonstrate it’s effectiveness, and the successes I’ve seen in my own practice of wide excision restoring women to their original vitality – yet ob-gyns are still just offering palliative care in the form of hormones, is dismaying to say the least. If hormones get the patient to the outcome she desires – functionality and return of quality of life, then they are an effective treatment. However, if they do not, we now know that delaying effective treatment to endometriosis patients in the form of palliative care can allow the disease to get more invasive and symptomatic. While there is currently no cure for endometriosis, wide excision surgery done by someone who can effectively identify the disease can be a highly effective therapy, and even curative. In addition, many women successfully manage their symptoms with alternative modalities from dietary changes to acupuncture. In short, health and wellness is not a pharmaceutical deficiency.
We now know that delaying effective treatment to endometriosis patients in the form of palliative care can allow the disease to get more invasive and symptomatic.
There are so many factors that play into the reasons for the lack of treatment options, including the American Congress of Obstetricians and Gynecologists (ACOG) refusing to update their outdated standards of care for endometriosis, to larger structural issues our entire healthcare system now grapples with. Over and over, women who have this disease get lost in the shuffle. Fortunately there are so many amazing clinical and patient activists who fight daily for changes in standards of care from Casey Berna to Shannon Cohn.
When I see my patients, the first thing I always do is just listen. This simple but powerful tool allows me as the physician a window into a woman’s experience. I’m hoping ob-gyn’s across the country, ACOG, and the larger medical system start to listen too.