What is Endometriosis?

Here are some common questions and answers explaining what endometriosis is – and isn’t – with sources from some of the top specialists out there referenced for you to check out.

How Do Doctors Describe Endometriosis?

Right off the bat, one thing that experts agree on is unanimous: painful periods are not normal. If you’ve read the What Is…Adenomyosis? or What Are…Uterine Fibroids? posts, you’ll recall this.

Endometriosis is a disease where cells similar to the endometrial lining (the endometrium –-inside the uterus) appear outside the uterus. It is also not imaginary and “in your head,” as written about in this useful article by Dr. Robert Albee, Founder Emeritus of the Center for Endometriosis Care in Atlanta, GA.

This explanation from the Center for Endometriosis Care is particularly helpful for understanding the difference between mild menstrual cramping and endometriosis:

Inflammatory hormones like prostaglandins (along with others) are linked to menstrual discomfort; this mild pain is not typically cause for alarm and may be remedied through a variety of measures. Usually, such pain is temporary and subsides after menses. This is called “dysmenorrhea.” Dysmenorrhea is NOT the same as endometriosis.

Endometriosis is not caused by “backflow” menstruation. Here’s another helpful excerpt from the same Center for Endometriosis Care article explaining the difference in the tissues:

Endometrium – the lining of the womb which breaks down and is shed during menstruation – is histologically different from the functional glands and stroma that comprise endometriosis. Contrary to popular public doctrine, while the tissue does somewhat resemble – it is not identical to – the native endometrium.

While it may sound scary at first, the “stages” of endo (i.e. Stage 1 to Stage 4) do not correlate with the severity of symptoms.

Endo isn’t considered an auto-immune disease, but it may be linked to several auto-immune disorders (meaning coexistence isn’t causality).

What Are Potential Symptoms of Endometriosis?

Symptoms of endometriosis (“endo”) can include: Pelvic pain, lower back pain, fatigue, painful sex, IBS or IBS-type symptoms, constipation and/or diarrhea, painful bowel movements, bloating, bladder dysfunction, painful/irregular periods, collapsed lungs, infertility.

These symptoms may occur outside of the menstrual cycle, meaning it’s not as simple as labeling endometriosis “painful periods.” You may also have pain or symptoms that are extra-pelvic (outside of the pelvic region) such as in the colon, or even in the thoracic area, that only a skilled surgeon can detect and excise (remove).

The effects of endo are not just physical – they can have mental, emotional, and social (including economic) impact.

Who Gets Endometriosis?

There is no known cause of endo or single explanation for it.

It’s estimated that approximately 7–15% of womxn are affected by endo (~176 million globally – 7.5 million in the US and 775,000 in Canada). It can also impact menstruators and non-menstruators alike – including rare cis males, post-hysterectomy/menopause and before menarche (first occurrence of menstruation).

How Do I Know if I Have Endometriosis?

The average length of delay in diagnosis has been reported to be an average of 6.7 years (3–11 years). So, if you’ve been dealing with pain and discomfort for what seems like a long time, unfortunately, you’re not alone.

The only definitive way to diagnose endo is through a laparoscopy (a minimally invasive surgery that provides visual and biopsy-proven confirmation). In some cases, imaging (like CTs or MRIs) can help to better inform a suspicion or a surgical plan, but they’re not a vehicle to definitive diagnosis.

How Can I Get Treatment for Endometriosis?

A hysterectomy does not cure endo (and nearly half of the more than 400,000 hysterectomies performed in the US each year are the result of endometriosis).

Pregnancy and menopause also do not cure endo, and neither do drugs/medications/pharmaceuticals.They can suppress symptoms temporarily but do not eradicate (or “heal”) endo.

Maya here: Tracking your pain and symptoms and reading up about the disease and patient experiences can be helpful into identifying trends and to getting to know the shades of your endo. Data was my evidence and ammunition to make a case for surgical treatment. You can download a copy of my tracker here.

The gold standard of care is surgical excision of endometriosis. Here are a couple of important distinctions from the Center of Endometriosis Care:

A laser or scissor is a tool
A da Vinci robotic-assisted procedure or laparoscopy is an approach
The skill of a surgeon to excise endo is what matters

A MIGS (Minimally Invasive Gynecologic Surgery) gynecologist is not necessarily an endometriosis specialist. An endometriosis specialist is an endometriosis specialist. Understanding this distinction may mean the difference between one surgery and multiple surgeries (or being recommended a hysterectomy when one is not required).

Maya here (again): The distinction would be a surgeon who can thoroughly excise endo using a laser compared to a surgeon who superficially or incompletely burns lesions (like ablation). I picture it like a lawn – are you pulling the dandelions out at the roots, or are you running a mower over the grass and keeping the seeds in place, which means they’ll bloom again.

Why Does Knowing about Endometriosis Matter?

Being a chronic condition, endometriosis translates into a loss of productivity at work (an average loss of 10.8 hours a week, anywhere from $4–$456 USD per womxn per week). That’s approximately $119 billion annually in the US.

Enabling access to adequate treatment and management of endometriosis is in everyone’s best interest. Knowing this, shouldn’t governments and employers feel incentivized to reclaim loss of productivity by supporting the treatment of this disease?

Some Final Thoughts

Maya here (last time, promise): Failure or delay in diagnosing endometriosis can mean years of distress for patients. A decade spent treating the wrong things (as was my case) can feel utterly enraging. And unfortunately, if front-line doctors like GPs or ER doctors aren’t dialed into endo, you may keep repeating a cycle of hospital admissions. You’re on the right track by trying to read up and find answers – don’t let the frustration lead you to quit. No one is going to look out for you but you – that’s a stark truth but one that helped me to keep going when I was undiagnosed but still knew something wasn’t right. You can find someone who can help. Keep pushing past the bullshit – or call me if you need a pep talk.

Patient Stories

Part 3 | The Surgery Prep & Recovery Strategies that Changed It All

Part 2 | The Torpedoes of Hormone Therapy – When Medical Menopause is the First Line of Defence

Part 1 | When Chronic Pain Gets a Name – An Unlikely Diagnosis Solves a Decade-Long Mystery

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