Meet Grace. Like 176 million women worldwide, Grace was diagnosed with endometriosis.
Forty years young, she had a hysterectomy completed for something entirely separate (low-grade cervical cancer). Since her teens she had “unbearable pain, bloating, heavy bleeding, and diarrhea.”
Her doctors never even considered endometriosis. Turns out, she probably had it for 20 years. Now, she has severe scarring and abdominal lesions.
So maybe you’ve never heard of endometriosis before and you’re wondering how big of a deal it is. We're confirming it’s a *big* deal. Just listen to the numbers:
- 10% of reproducing women are affected by endometriosis. (In comparison, 9% of adults globally are affected by diabetes)
- 30-40% of women with endometriosis may not be able to have children.
- 50% of infertile women are affected by endometriosis.
What is endometriosis?
When a woman has endometriosis, tissue similar to the lining of the uterus is found somewhere else in the body. These are called lesions and can be found anywhere in the pelvic cavity in places like:
- On the ovaries
- The fallopian tubes
- On the pelvic side-wall (peritoneum)
- The uterosacral ligaments
- The Pouch of Douglas (aka the cul-de-sac or rectal-vaginal septum): the space between the rectum and the uterus
It can also be found in:
- C-section scars
- Laparoscopy/laparotomy scars
- On the bladder
- On the bowel
- On the intestines, colon, appendix, and rectum
^ FYI, these locations are not as common. In even rarer cases, endometriosis has been found:
- Inside the vagina
- Inside the bladder
- On the skin
- In the lung, spine, and brain
How does it occur?
While the causes of endometriosis remain unknown, several unproven theories exist. The downside: they don’t fully explain the development of the disease. These theories include:
- Retrograde menstruation - This is when menstrual blood containing endometrial cells flows back through the fallopian tubes. It goes into the pelvic cavity instead of out the body through the vagina. These endometrial cells then stick to the pelvic walls and surfaces of the pelvic organs where they grow and continue to thicken and bleed during each menstrual cycle. This was one of the first theories about endometriosis developed in the 1920's by Dr. Sampson. It has since been highly debated as there are many scenarios where it doesn't tell the full story. The middle ground says this theory of retrograde menstruation is not a sole cause, but rather a piece to the puzzle of the complicated etiology of endometriosis.
Genetics: a hereditary link showing that if first degree relatives of a woman have endometriosis, then she is more likely to develop it. It has been proposed that endometriosis is a disease of multifactorial inheritance, meaning that it may not be determined strictly by a single gene, but rather a multitude of genes interacting together. In addition, environmental effects are also believed to play a role in how the genes are activated and expressed.
Endometrial stem cells - During the menstrual cycle, the endometrium sheds and then regenerates. This regeneration is possible due to stem cells, which have the capability to differentiate into many different types of cells in the body. During shedding, the menstrual blood will contain some cells with this regenerative capability. If these cells spread to ectopic regions (abnormal regions), the cells can differentiate into endometrial cells and cause endometriosis. These cells will then divide and regenerate outside the pelvic cavity, which explains the continual spreading of endometriosis throughout the pelvic cavity and beyond.
- Metaplasia: It is believed that embryonic cells from reproductive system development can remain and implant into the abdominal cavity, forming endometriotic lesions. These lesions will then respond to estrogen when a woman first has her period in her adolescence. This theory is called the Induction Theory, in which hormones, immune signals, or some other factor causes the transformation of peritoneal cells (cells that make up the lining of the abdomen) into endometrial cells. However, this idea has its critics as it does not explain how endometriosis can develop outside of the lower pelvic cavity.
Mulleriosis: this theory combines many of the others along with developmental abnormalities of the Mullerian duct, which goes on to develop the uterus, cervix, fallopian tubes, etc. This, generally considered to be controlled by genetics and potentially involving metaplasia and/or stem cell theories could explain the connection between endometriosis and other conditions such as irritable bowel/ bladder symptoms. It would also explain why babies can be born with endometriosis lesions.
- Endometrial cell transport - The blood vessels or tissue fluid (lymphatic) system may move endometrial cells to other parts of the body. This may explain how endometriosis ends up in distant sites, such as the lung, brain, skin, or eye.
- Immune system disorder - The immune system may make the body unable to recognize and destroy endometrial tissue growing outside the uterus. There is some debate as to if this is a cause or effect of endometriosis.
One thing most scientists agree on - endometriosis is worsened by estrogen. That’s why most of the current treatments aim to temper estrogen production to help relieve symptoms. That being said, none of these treatments fully cure endometriosis.
There are several factors that put you at a greater risk for developing endometriosis. They include:
- Never giving birth
- Starting your period at an early age
- Going through menopause at an older age
- Short menstrual cycles (think less than 27 days)
- Having menstrual cycles that last longer than seven days
- Higher levels of estrogen in your body or a greater lifetime of exposure to estrogen your body produces
- Low BMI
- One or more relatives (think mother, aunt, sister) with endometriosis
- Any medical condition that prevents the normal passage of menstrual flow out of the body
- Reproductive tract irregularities
Have we mentioned there’s no cure for endometriosis? Knowing that, get this - endometriosis receives a fraction of the research funding for other conditions like diabetes. Yet the cost of endometriosis per women per year lies around the same as diabetes.
It costs ~$10,700 per year to have endometriosis. ~$7,000 is money lost in work productivity, ~$3,500 goes to health care costs, and ~$200 goes to non-health care costs.
Curious if you or a loved one might be suffering from endometriosis? A real diagnosis can only be made by laparoscopy (biopsy and histology being the ‘gold standard’).
Another disappointing endo fact: on average, it takes seven and a half years to be diagnosed from the first symptoms.
What are those symptoms? Symptoms of endometriosis include:
- Abnormal bleeding
- Pelvic pain
- Painful periods
- Painful ovulation
- Pain during sex
- Diarrhea or constipation
- Bloating or nausea (especially during your period)
That being said, endometriosis is like a snowflake. Definitely less magical, it affects every woman differently. This makes diagnosis challenging, but not impossible. If you relate to the above symptoms, see a doctor right away. If they aren’t helpful, you are within your right as a patient to pressure them for the laparoscopy... and/or get a second opinion.
The difference in experience also translates to the fact that there’s no single treatment that will work for everyone.
What to do:
The three main treatments for endometriosis are surgery (to remove lesions or the affected organs), hormones (to control estrogen exposure), and pain management (because you shouldn't have to suffer through it). It’s important you discuss your full range of symptoms and treatment options with your doctor.
Is there anything you can do on your own to help endometriosis?
Sure! First things first - get moving. Netflix and chill is not a friend of endometriosis. While exercise can be difficult with those suffering from chronic pain, endometriosis gets worse with a sedentary lifestyle. And if you have chronic pelvic pain, core strengthening exercises could really make a difference. Try Pilates, planking, or personal training, best done under the care of a practitioner. Other lifestyle changes (such as diet adjustments, changing personal products, etc) have also been shown to be useful.
Take care of your mental health. There is no denying the emotional strain that feeling sick and in pain can take. This writer / endo warrior points out that talking to a professional, surrounding yourself with good people, and finding a community of those who experience the same disease can lift you up when you're feeling low.
Chinese herbal medicine has also been shown to reduce symptoms linked to endometriosis with fewer side effects than conventional treatment. Sound like your jam? #PeriodPainFree herbal blends use the same science have been able to replicate the results of those studies through our beta users.
Endometriosis Foundation of America for trustworthy info
Endo Warriors for support
Endo News for the latest research
Speak Endo for resources on how to talk to your doctor about your symptoms
If this strikes a chord with you, we highly encourage you to check out Abby Norman’s memoir Ask Me About My Uterus. This important book advocates for the recognition of women’s health issues and to make doctors believe in women’s pain. We leave you with Norman’s inspiring words:
“I knew she was in pain, but I couldn’t know exactly how she felt. I had experienced a few childhood injuries that were pretty bad—the screaming, crying, bleeding kind—and I imagined it probably felt like that.
But I couldn’t know for sure what it felt like to be in her body, and I found that deeply disconcerting. She was my best friend, and I wanted to take her pain away. But how could I, when I didn’t understand it?”