Since there is so much misinformation on endometriosis, I’ve written out this basic overview. Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endo). Always check with your qualified medical professional before making any changes to your treatment plan.
*For more detailed information on endometriosis, check out the other pages in the menu*
Endometriosis isn’t the uterine lining – it’s tissue that’s similar to it, but there are hundreds of differences between the two tissues.
Endometriosis does NOT slough and shed with your period and then that blood has no where to go. Endometriosis does NOT act like the uterine lining (the endometrium) because it’s NOT the uterine lining.
Endometriosis isn’t caused by retrograde menstruation.
Hysterectomy, pregnancy, and medical/natural menopause don’t treat endometriosis. (In some instances, a hysterectomy can help people if their pain is actually because of problems originating in their uterus, such as adenomyosis. The role of a hysterectomy is on a case by case basis that would need to be discussed in depth with an experienced endometriosis surgeon – not just any gynecologist.)
You can have endometriosis and endometriosis pain post-hysterectomy or post-menopause.
Endometriosis can make its own estrogen via the aromatase enzyme.
Birth controls, hormones, and GnRh drugs (such as Lupron, Orilissa, Zoladex, Synarel, Visanne, Dienogest, Mirena IUD) don’t treat or diagnose endometriosis. These manage the SYMPTOMS ONLY (for some people – they don’t work in everyone, and any relief is typically temporary with pain returning once the person goes off the medication.) They don’t remove existing lesions, and endometriosis can still progress while on them.
Endometriosis doesn’t just affect reproductive organs – it can be found in other body locations as well, such as the intestines, bladder, lung, or diaphragm. This is called extra pelvic endometriosis.
Endometriosis isn’t a “women’s disease”. It affects cis-women, nonbinary people, trans men, and there are even about 20 cases in the medical literature of endometriosis in people assigned male at birth. Endometriosis has also been found in animals, even ones that don’t menstruate!
Endometriosis isn’t a “white women’s disease”. Endometriosis has been historically under-diagnosed and misdiagnosed as other conditions (fibroids, pelvic inflammatory disease) in Black people and people of color. Unfortunately, some outdated websites continue to promote the misinformation that being white is a risk factor for endometriosis, which delays diagnosis for people who are not white.
Teens, premenarchal, and postmenopausal people can have endometriosis. There is no age too old or too young. Endometriosis has been found in fetuses as well as people in their 80s!
You can have a negative ultrasound or MRI and STILL have endometriosis, as not all forms of endometriosis show up on scans. Additionally, when endometriosis signs are present on a scan, not all doctors have experience in recognizing them. Even the best (or self-proclaimed “best”) ultrasound or MRI experts in the world cannot rule out endometriosis using scans.
The only way to have a confirmed diagnosis of endometriosis is via surgery and a pathology report. Medication can’t diagnose endometriosis (for example: having less pain on a medication such as Lupron doesn’t mean you have endometriosis.) There is no blood test that diagnoses endometriosis.
There are 2 types of surgery: ablation (superficial burning of endometriosis) and excision (cutting out at the root). With excision, the rate of recurrence (endometriosis coming back) is around 7-20%. With ablation, disease persistence is fully expected, since the endometriosis wasn’t truly removed in the first place (and therefore persists).
Most gynecologists do ablation surgery. It takes special training and a high level of skill to do excision, so there are only about 200-300 excision surgeons worldwide. See the treatment section below for more information and links for finding a doctor.
You aren’t doomed. Even without excision, many people live with less or no symptoms by changing their diet and lifestyle, reducing stress, treating co-conditions, or doing Traditional Chinese Medicine (such as acupuncture or Chinese herbs). See Endo is a Full Body Disease for a multidisciplinary approach to endometriosis.
For More Information
- What Endometriosis Patients Want Healthcare Professionals to Know About Endometriosis – by Kristina Kasparian, PhD
- Empowered Magazine UK, Issue 3 – On pages 6-11, Heather Guidone from the Center for Endometriosis Care, provides a fantastic overview of endometriosis.
Related Podcast Episodes
- Ep 12 – Common Endometriosis Myths
- Ep 58 – Endometriosis Interview with Heather Guidone, BCPA, CEC Program Director
- Ep 59 – Endometriosis Interview (Part 1) with Wendy Bingham DPT, Founder of ExtraPelvic Not Rare
- Ep 60 – Endometriosis Interview (Part 2) with Wendy Bingham DPT, Founder of ExtraPelvic Not Rare
- Ep 67 – Endometriosis Interview with Dr. David Redwine, World-Renowned Excision Surgeon. Part 1
- Ep 68 – Endometriosis Interview with Dr. David Redwine, World-Renowned Excision Surgeon. Part 2