If you consider the fact that roughly 1 in 10 American uterus-owning people (and an estimated 200 million worldwide) have Endometriosis, you’d think that we’d have a better understanding of this condition as a whole. But despite the high volume of folks who experience this painful inflammatory condition, endometriosis has been under-researched and under-funded in the medical community, and has been heavily associated with the sexist diagnosis of hysteria: essentially, assuming that a woman is dramatizing the amount of pain she’s actually in (and yes, this has literally been happening for 4,000 years).
However, in the last few years the lack of education around endometriosis has received more attention than ever before. In February, the American Journal of Obstetrics and Gynecology published an article called Assessing Research Gaps and Unmet Needs in Endometriosis, which calls for increased education for patients, more research into proper diagnosis and treatment, and opportunity for new advancements in the science surrounding menstruation. Until that happens, however, we will do our best to break down Endometriosis so you have a general understanding of the condition in case you start to experience symptoms. Let’s get started!
What is endometriosis?
Endometriosis occurs when a thick lining of connective tissue (similar the endometrium lining) grows over the pelvis, abdomen, fallopian tubes, ovaries, or/and outside of the uterus. This lining can cause pain and discomfort, and could result in painful sex, painful bowel movements, or infertility.
What causes endometriosis?
We don’t *technically* know what the root cause of endometriosis is (to which I say: THIS IS WHY WE NEED MORE RESEARCH) but there are popular theories as to why, including:
- Retrograde menstrual flow: No, this has nothing to do with your horoscope! This is when the uterine lining that is shed during a menstrual cycle flows through the Fallopian tube into other parts of the body.
- Genetics: It’s not uncommon to find endometriosis linked to multiple generations, although it’s still being determined if this is actually a root cause or a coincidence.
- Surgery: A surgery in the abdominal area could result in endometrial cells latching onto a surgical scar, as the tissue can be accidentally moved around during the procedure. It’s not uncommon for endometrial tissue to be found in abdominal scars.
- Immune System Disorder: An ISD may make it difficult for the body to respond and eliminate endometrial tissue that is spreading outside of the uterus.
- Hormones: We still do not have enough research (ahem) to determine whether high levels of estrogen might be connected to endometriosis. Theoretically, the estrogen sends signals to our body that makes the tissue outside of our uterus grow.
What are the symptoms?
Symptoms of endometriosis can look different for everyone, but the most common ones are:
- Heavy, painful periods (also known as dysmenorrhea)
- Painful sex
- Pain during bowel movements or urination
- Gastrointestinal issues, including nausea, diarrhea, and constipation
- Excessive bleeding during and/or in-between periods
Of course, these symptoms alone could be signs of a different underlying issue, but it’s important to bring endometriosis up to your doctor so they can take it into consideration as you search for a diagnosis. Because there isn't a lot of education or resources around this condition, it’s important to advocate for yourself when speaking with a healthcare professional. Endometriosis is famously and commonly misdiagnosed, so we have to be our body’s biggest advocate.
What are the treatment options?
While each case of endometriosis is different, common treatment options are:
- Hormonal birth control like the IUD or extended-cycle options help decrease frequency and bleeding and help suppress the subsequent pain (but, of course, this depends on the person, and this method does not work for everyone)
- Pain medication. Yup, like IBUProfen, Midol, and Aspirin. What can I say? We have a long, long way to go.
- Supplements and alternative therapies. Some folks have found that therapeutic options like acupuncture and yoni massage have helped, along with additional vitamin supplements like magnesium, vitamin B1, or omega-3 fatty acids.
- Pelvic floor therapy by a Physical Therapist can help stretch and strengthen the pelvic muscles, reduce pain and restore alignment.
- Laparoscopy, a surgery that allows them to get a clear view of abdominal organs, and this case, be able to get a proper view of the lining and determine whether you have endometriosis. Once it's determined, the lining can subsequently be removed. While surgery can significantly help relive pain, it doesn't always "cure" endometriosis, or prevent the lining from growing again. Hysterectomies are another surgical option, but is also more invasive.
- If none of these treatments feel right (or seem sustainable long term) we urge you to continue to do research (because when it comes to endometriosis, the research and findings are changing and advancing often).
As you look for treatment options, don't forget to prioritize your mental health, too! Joining a group of folks who are going through a similar experience, like The Endometriosis Foundation of America, for example, can make you feel less alone and more supported as you navigate Endometriosis. The EndoFound shares resources, personal experience, thoughtful advice, policy reform, and even Endo-focused yoga classes. This group currently has almost 50k followers— a clear reminder that this condition (formally known as "hysteria") is legitimate, and deserves more attention, research, and treatment options for all.