What Is Endometriosis? The Reproductive Disorder That's Often Misunderstood, Misdiagnosed, And Mishandled
What do the singer Halsey, the model Alexa Chung, the comedian Whoopi Goldberg, the actress Daisy Ridley, and I all have in common? Endometriosis.
This women’s health issue is important to me because I was diagnosed and treated for endometriosis in my twenties. I was extremely fortunate to have a doctor who was willing to search for the root cause of my health issues and then address it in the most effective way possible. Unfortunately, this isn’t the case for many, many women.
What Is Endometriosis?
Endometriosis is a disorder in which tissue that is very similar to the lining of the uterus — the endometrium — grows outside the uterus. This endometrial-like tissue acts just like the lining of your uterus; it thickens and sheds during your menstrual cycle. But because the blood has nowhere to go when it sloughs off, it can cause pain, swelling, inflammation, scarring, and adhesions.
Endometriosis is a disorder in which tissue that is very similar to the lining of the uterus — the endometrium — grows outside the uterus.
Endometriosis can be present on the outside of the uterus, on or inside the ovaries, on or inside the fallopian tubes, on the lining of the pelvic cavity, and on other organs such as the intestines, bladder, cervix, and even lungs.
Doctors rate endometriosis by stages, according to severity, location, size, involvement of other organs, and the extent of adhesions or blockages. The four stages are:
Stage 1: Minimal
Stage 2: Mild
Stage 3: Moderate
Stage 4: Severe
Who Can Have Endometriosis?
Pretty much any woman. According to the American College of Obstetricians and Gynecologists, about 10% of women of reproductive age in America suffer from endometriosis. And if you have a female family member who has endometriosis, you’re five to seven times more likely to have endometriosis yourself.
10% of women of reproductive age in America suffer from endometriosis.
Most women don’t get diagnosed until they are in their 30s or 40s. The only way to be concretely diagnosed with endometriosis is to do a laparoscopic surgery and a biopsy. Because of the range of symptoms and the requirements for getting diagnosed, it can take up to 12 years for a woman to be concretely diagnosed with endometriosis.
Painful menstrual cramps, sometimes debilitating
Pelvic pain, sometimes chronic
Heavy or irregular bleeding
Nausea during period
Diarrhea, painful bowel movements, or painful urination during period
Bloating during period
Dizziness or headaches with period
Low-grade fever or low resistance to infection
Progesterone deficiency post-ovulation
High estrogen/estrogen dominance
Abnormal ovulation patterns
The tricky thing with endometriosis is that the amount or severity of the disease doesn’t correlate with the amount or severity of the symptoms. One woman could have minimal Stage 1 endometriosis and suffer excruciating or chronic pain, while another woman with advanced Stage 4 endometriosis could have barely any symptoms or pain...which, of course, complicates getting a diagnosis.
The tricky thing with endometriosis is that the amount or severity of the disease doesn’t correlate with the amount or severity of the symptoms.
What Causes Endometriosis?
Like the other major women’s health issue — polycystic ovarian syndrome — the cause of endometriosis is unknown. But there are several medical theories that have been suggested since endometriosis was identified by its current definition in 1920:
Retrograde menstruation: First put forth by Dr. J.A. Sampson in 1927, this theory suggests that endometriosis is caused by a backwards flow of blood during the period up and out of the fallopian tubes. This blood then lands on and implants in other organs inside the pelvic cavity. The problem with this theory is that about 90% of women have retrograde menstruation, but only a fraction of these women have endometriosis.
Meyer’s theory: This theory suggests that cells present at birth inside the pelvic cavity can differentiate into endometrial cells during puberty when they are exposed to high levels of estrogen.
Immune system and inflammatory responses: The immune system is definitely involved with endometriosis, but whether it’s a cause or an effect has been impossible to tell so far. Endometriosis exhibits several elements similarly found in several autoimmune diseases. Additionally, one study revealed that white blood cell macrophages (which usually “eat” viruses, bacteria, cell parts, etc.) in the pelvic cavity were promoting endometriosis growth instead of attacking the lesions.
It’s important to note that the following tips only address the symptoms, not the root cause. They won’t do much (or anything) to actually eradicate the disease from a woman’s body.
Supplements: One study showed that supplementing with the antioxidants vitamin E and vitamin C reduced chronic pain and inflammation in women with endometriosis. Other beneficial supplements that help to decrease endometriosis pain are melatonin, magnesium, and a vitamin B complex.
Acupuncture: In endometriosis, cancer antigen 125 (CA-125) levels are elevated in the pelvic cavity. The more disease, the higher the amount of CA-125. But acupuncture can reduce the amount of CA-125, which in turn reduces the pain.
Anti-Inflammatory Diet: Women’s health specialist Dr. Jolene Brighten recommends eliminating gluten, dairy, and soy, as well as eating six to nine servings of vegetables a day and taking a probiotic. These recommendations are targeted at the immune response aspect of endometriosis.
Women’s health specialist Dr. Jolene Brighten recommends eliminating gluten, dairy, and soy from your diet.
Pregnancy: As ironic as it sounds, pregnancy and breastfeeding can reduce endometriosis pain. Because you aren’t having a period during those months, the endometriosis isn’t active. But pregnancy isn’t a cure — it just pauses the symptoms for a while. (Random fact: There has been an accurate and detailed description of the symptoms and physical appearance of endometriosis since the 5th century BC, compiled by various ancient medical authors in the Hippocratic Corpus. The top recommended treatment? Pregnancy.)
Birth Control: Hormonal birth control is often prescribed to alleviate the symptoms, but, again, it won’t cure endometriosis. Another consideration is that if birth control is prescribed to a teenager for pain and irregular cycles, it could very likely be masking endometriosis (or PCOS). One study reported that up to 70% of teenage girls with chronic pelvic pain will later be diagnosed with endometriosis. Additionally, for women who have been on birth control for five years and who have never given birth, research shows they have a 2.3-fold increased risk of getting diagnosed with endometriosis, compared to women who have never been on birth control.
The Best Treatment for Endometriosis
The only way to concretely diagnose endometriosis is through surgery and a biopsy. The most common procedure to do that is laparoscopy, a surgery in which small incisions are made so a lighted viewing scope and surgical instruments can be inserted into the abdomen. The abdomen is then inflated with gas (carbon dioxide or nitrous oxide) which pushes the muscles and skin away from the organs so the surgeon can see clearly and have space to operate. The surgeon will remove the endometriosis lesions with excision (cutting it out), ablation (lasers), or cauterization. Some surgeons can perform the laparoscopy robotically, which allows the surgeon to control every surgical instrument himself, without relying on an assistant.
Excision is the only method that removes the entire lesion.
Excision is the most successful method of removal and the best chance at curing endometriosis. Techniques that only treat the surface (like cauterization) allow the diseased tissue to continue causing symptoms and pain because endometriosis is like an iceberg — the majority of the lesion is underneath the surface. Excision is the only method that removes the entire lesion. Additionally, the heat that accompanies lasers and cauterization can damage the healthy tissue surrounding the endometriosis, causing inflammation and scar tissue. Between 40-60% of women need a second surgery within two years if the endometriosis is not excised. On the other hand, excision results in long-term relief in 75% of patients.
Even though excision is the best method of treating endometriosis, it can come back. Even with the best surgeon and a perfect surgery, endometriosis can return in a small percentage of patients (about 7%).
Finding Solutions for Endometriosis in the Future
Endometriosis is a frustrating disease — it’s hard to live with, hard to get diagnosed, and hard to get treated properly. And the lack of attention and research money it receives from the medical community is likewise frustrating. According to a Cosmopolitan article, “the NIH projects its endo funding to be just $6 million this year . That’s less than $1 per patient—and $4 million less than endo research received just four years ago. For context, Alzheimer’s disease gets about $344 per patient. (Alzheimer’s, by the way, affects roughly the same number of people in the U.S. as endo yet is projected to receive nearly two billion dollars in funding from the NIH this year.)”
The NIH projects its endo funding to be just $6 million this year. That’s less than $1 per patient.
The article continues to point out that NIH funding allotment has a trickle down effect. Less money at the top means fewer researchers will apply for grants and fewer doctors and scientists will choose to focus on it. So it looks like we won’t be getting many medical breakthroughs in this area any time soon.
Being a woman with symptoms indicative of a reproductive health issue in the modern era is unreasonably difficult. The majority of doctors are far too inclined to disregard our symptoms or just prescribe the Pill like it’s an universal band-aid. Don’t waste your time with doctors who have this attitude. Be a loud and persistent advocate for yourself and your health. Seek effective treatments and cures. Don’t just settle for superficial symptom management.