Endo Warriors: We See You

It is estimated that nearly 200 million people worldwide have endometriosis, often suffering in silence for up to 8-10 years before getting a proper diagnosis, or playing “misdiagnosis roulette.” Unfortunately, even an accurate diagnosis doesn’t ensure proper treatment, often baffling healthcare practitioners and leading to an over-prescribing of opioids, yoga and a hot bath. Patients are often led down a road of surgeries, medications, invasive procedures, and constant pain. These inaccurate diagnoses and lack of specialized treatment often lead to anxiety and depression, and an inability to imagine life without pain. It is a little known disease that gains little attention or fundraising, although thankfully that is slowly starting to change. 

So, just what is endometriosis, or endo for short? Endometriosis is when cells that are similar to those found in the endometrium are found outside of the uterus, often starting the process of progressively accumulating symptoms. The accumulation of these cells over time may affect organs, leading to body alignment being out of whack, and may cause an inflammatory response, making autoimmune disorders more of a prospect. In fact, one of endo’s distinctive characteristics is its ability to send off a cascade of ailments that affect so many different parts of the body, including painful bladder syndrome, IBS, central nervous system issues, pelvic floor dysfunction, not to mention the anxiety and depression associated with these conditions. 

So, why then, is there so little known and done about it in the Western medical world? There may be a couple of reasons. First, it’s not a disease that can be measured easily. There aren’t really any reliable methods of screening or imaging for it, and no blood labs that show that it’s there. A positive diagnosis can come only from removing tissue and having it analysed, or “pathological confirmation.” Doctors like to have measurements and markers, otherwise it involves sitting down with a patient and really diving in to listen and understand - and as the system is currently set up, that’s not likely to happen. In March 2017 the then-president of the American College of Obstetrics and Gynecology revealed that “63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.” Really? That certainly seems like an unnecessary harnessing of energy to find the 37-50 percent that are comfortable and/or knowledgable. Second, it’s primarily treated as a ‘feminine’ problem, which often leads to various forms of victim-blaming and stigmatizing, whether intentional or not. Evidence of this can be seen in that it is often treated as an STD or pelvic inflammatory disease (PID) caused by an STD, particularly in people of color, sending them to various treatment clinics that do basically nothing.

This is where physical therapists like Amy Stein enter the picture. Often a last ditch effort from both the bewildered physician and frustrated and desperate patient, Amy sees many people that have been suffering for years, decades sometimes, and feel they have no other options. And really, why would anyone think to turn to physical therapy to treat an issue to body parts not necessarily associated with PT? As it turns out, it is exactly where they should be turning, and it is way past time for physicians to recognize this. To better understand why, it is important to know that the body’s abdomino-pelvic core is home to the muscles that hold us upright and help keep us mobile, and the organs that these muscles, ligaments, fascia and bones within this core guard are “utterly crucial, determinative of the way we live.” To simplify, if the endo cells that have migrated implant and grow, they may eventually change the whole anatomy of the core, pulling on the muscles, fascia, and nerves, creating the pain and inflammation often seen among patients. Over time, all this may begin to affect the muscles of the pelvic floor, thereby affecting the entire skeleton, from your neck all the way to your toes. So, seeing someone like Amy when the pain is first present, or the condition is first diagnosed, is key to getting effective treatment. 

So where does Wellness x Nature fit into all of this? It just so happens that more and more people are finding relief through CBD in addition to their self-care regimen of breathing techniques, physical therapy, nutrition, and gentle stretches. How? It also just so happens that the endocannabinoid system (ECS) plays a large role in things like PMS, menopause, and yep, endometriosis. To super oversimplify, the ECS is made up of cannabinoid receptors known as CB1 and CB2 receptors. These receptors are present and connected to every organ and system all throughout the body. Some studies in rats have shown that endometriosis was connected to a deficiency in endocannabinoids, and it may even be possible to say that if endometrial tissue is lacking in these receptors, then the checks and balances system gets thrown off and errant cells are left unchecked and left to grow out of control. While we are a long way off from declaring cannabis a legitimate treatment for endo, many patients are taking matters into their own hands. A quick google search will turn up articles about people finding relief by using CBD in forms such as tinctures, lubricants, topicals, and even vaping - relief that they weren’t able to get elsewhere. The research may not yet be there, but many forums dedicated to endo are full of people that seem to be finding relief this way, and we were able to turn up at least one clinical trial devoted to it. Anecdotal? Yes. Promising? Definitely.

Classic Endo Myths, from Beating Endo: How to Reclaim Your Life from Endometriosis,
by Iris Orbuch, MD and Amy Stein, DPT

MYTH: Hysterectomy is a cure for endo.

FALSE! Hysterectomy is neither a treatment nor a cure. By definition, endo consists of cells similar to those in the lining of the uterus but found outside the uterus; removing the uterus ignores the cells outside. Only surgical excision removes endometriosis cells.

MYTH: Medical menopause is a cure for endo.

FALSE! Just because your medicines give you hot flashes doesn’t mean your endometriosis is going away.

MYTH: Teenagers are too young to have endo.

FALSE! Teenagers can have endo, and it can be discovered at an advanced state.

MYTH: If you have minimal endo, you should have minimal symptoms.

FALSE! There is no correlation between the amount of endometriosis and the severity of your symptoms.

MYTH: All I need is an operation and all of my symptoms will disappear OR All I need is to become vegan and all of my symptoms will disappear OR All I need are a few PT sessions and all of my symptoms will disappear.

FALSE! To truly beat endo, you need an integrated, multimodal approach - a set of actions. 

Sources:

Beating Endo: How to Reclaim Your Life from Endometriosis, by Iris Orbuch, MD and Amy Stein, DPT (learn more)

https://clinicaltrials.gov/ct2/show/NCT04527003

https://www.projectcbd.org/medicine/cbd-cannabis-endometriosis