Since there is so much misinformation on endometriosis, I’ve written out this information below as a basic overview. For more in-depth information from a reputable source, I recommend you read the article Endometriosis: A Complex Disease. Make sure to return to my Resources page for links to helpful websites and articles!
Below you will find:
Endometriosis isn’t the uterine lining – it’s tissue that’s SIMILAR to it.
Endometriosis does NOT bleed and shed with your period and then that blood has no where to go. Endo does NOT act like the uterine lining (endometrium) because it’s NOT the uterine lining.
Endometriosis isn’t caused by retrograde menstruation.
Hysterectomy, pregnancy, and medical (or natural) menopause don’t treat endometriosis.
Birth controls, hormones, and GnRh drugs, such as Lupron, Orilissa, Zoladex, Visanne, and Mirena IUD, don’t treat or diagnose endometriosis. These treat the SYMPTOMS ONLY. They don’t stop the progression of endometriosis nor shrink the existing growths.
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.
Teens and postmenopausal womxn can have endometriosis.
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.
The only way to have a confirmed diagnosis of endometriosis is via surgery and a pathology report.
There are 2 types of surgery: ablation (superficial burning of endometriosis) and excision (cutting out at the root.) With ablation, pain and endometriosis often come back in 40-100% of patients within a few years. With excision, the rate of recurrence can be as low as 7%.
Most gynecologists do ablation. There are only about 200 excision specialists worldwide. A great place to look for an endometriosis expert is on iCareBetter, or to get recommendations for a doctor via a group like Nancy’s Nook on FB. It’s important to ask the doctor questions about their experience & technique. Melissa from Eighty-Six the Endo has a list of questions to ask the doctor and also explains how she got her insurance to approve excision surgery!
You aren’t doomed. Even without excision, many people live with less or no symptoms by changing their diet and lifestyle, reducing stress, or doing Chinese medicine.
What is Endometriosis?
Endometriosis is tissue similar to the endometrium (the uterine lining) but is not the endometrium. These endometriosis lesions grow in the body when they shouldn’t. While it is most commonly found on the female reproductive system, it has been found in nine other body systems. Patients with endometriosis may have it on the ovaries, peritoneum, bowel, bladder, uterosacral ligaments, rectovaginal septum, lung, diaphragm, or other parts of the body.
There are three types of endometriosis: Superficial, Ovarian Endometrioma (OME), and Deeply infiltrating endometriosis (DIE).
Endometriosis has glands and stroma, but doesn’t generally have blood vessels. Endometriosis glands secrete an inflammatory substance, which can irritate the surrounding tissue and destabilize nearby capillaries, causing bleeding in the surrounding tissues. This bleeding and inflammation can cause an immune response, scar tissue/ adhesions, new blood vessels to grow in surrounding tissue, and pain.
Delay in Diagnosis
It’s estimated that more than 176 million womxn have endometriosis worldwide. It affects people of all races, nationalities, and gender identities who are biologically female. About one in ten people assigned female at birth have this disease. In spite of its prevalence, there is often a long delay in diagnosis. Various studies have shown that the average time to be diagnosed is between 4-11 years.
Delays in diagnosis can result for many reasons. The first hurdle many endometriosis patients encounter is just trying to get a doctor to take them seriously when they report their pain. It may be due to the sex and gender bias for womxn in medicine, or from the doctor’s lack of knowledge on endometriosis, but many patients report having their pain dismissed over and over again; being told that it’s “all in their head”, stress, or anxiety; or being told that “pain for womxn is normal.”
Once that hurdle to be taken seriously is crossed, gynecologists may believe the patient and suspect endometriosis but, due to a lack of training in the disease, are unable to diagnose it. They may not recognize the suggestion of its presence on scans such as ultrasounds or MRIs, or know that not all types of endometriosis show up on these scans, and therefore a negative scan doesn’t necessarily mean the patient doesn’t have endometriosis. Laparoscopy with a pathology report is the only way to have a definitive diagnosis of endometriosis, but many gynecologists who are not skilled in recognizing the various appearances or locations of endometriosis may miss obvious signs of the disease during surgery.
Another delay may result from receiving a misdiagnosis. Endometriosis symptoms can present as digestive complaints, urological symptoms, full body pain, joint pain, or other symptoms, depending on where it is located. This may prompt a patient to see a gastrointestinal doctor, urologist, rheumatologist, or another specialist who misdiagnoses them with a different condition when the underlying cause is actually endometriosis. Melissa, from Eighty-Six the Endo, wrote an article about this called Why Every Single Medical Professional Needs to Know About Endometriosis. With a misdiagnosis or even a co-condition, such as Painful Bladder Syndrome, Irritable Bowel Syndrome, or Fibromyalgia, endometriosis symptoms can be blamed on this other condition.
Hormonal therapy, such as GnRh drugs that medically induce menopause, birth control, or the Mirena IUD, only treats the symptoms of endometriosis, and doesn’t stop the progression of endometriosis nor reduce the growths. Neither a hysterectomy nor pregnancy cures endometriosis. However, due to misinformation, many gynecologists who are not experts in endometriosis use these various methods as ‘treatment.’
The gold standard treatment for endometriosis is excision surgery, because it removes the disease at the root. This statistically gives the lowest rate of recurrence of the endometriosis over ablation, which is a technique which burns the endometriosis superficially. With ablation, pain and endometriosis often come back in 40-100% of
patients within a few years. With excision, the rate of recurrence can
be as low as 7%. Additionally, due to the heat generated with ablation surgery, it usually cannot treat endometriosis on delicate tissues such as the bladder or intestines.
If there is bowel or bladder involvement, the excision surgeon will often work with a multidisciplinary team, such as a general surgeon or a bowel surgeon, to excise endometriosis from these organs as well. Excision surgery is renowned in the field as being an extremely difficult gynecological surgery, requiring a high skill level to remove endometriosis from the delicate tissues, as well as separate organs that may have fused together due to adhesions. For example, the patient may have an obliterated cul-de-sac (the intestines fused to the uterus), ovaries stuck to the uterus, or the intestines fused to the pelvic sidewall. It takes careful skill to be able to remove these organs from each other.
The majority of gynecologists do ablation surgery, not excision. It’s estimated that there are only about 200 excision specialists worldwide, even though this disease affects 176 million people. There are many barriers to access excision, such as cost, location, insurance hurdles, long wait times, or lack of a referral due to inadequate education among doctors that excision is indeed the gold standard for care.
Excision surgery is oftentimes step one in the treatment of endometriosis. Endometriosis is a complex disease and may be present with other co-conditions like Interstitial Cystitis/Painful Bladder Syndrome, pelvic floor dysfunction, small intestinal bacterial overgrowth (SIBO) or gut dysbiosis, hormone imbalance, or irritable bowel syndrome (IBS). While many people do have their symptoms diminish or disappear after excision surgery, others may need to address co-conditions to see more relief.
No one knows the cause of endometriosis, but evidence is mounting that it is not caused by retrograde menstruation. This 100-year-old theory has never been proven and has so many holes in it at this point that the likelihood of it being is almost impossible. Unfortunately, many ineffective treatment options are based on this still unproven theory.
While there are several theories to the cause of endometriosis – and there may indeed be multiple factors and causes playing into why a person has it – the best fitting theory of origin is Mulleriosis. This proposes that endometriosis is due to a developmental defect in the formation of the Mullerian duct system when we are embryos. The Mullerian duct is the very beginnings of the female reproductive system. Cells that are laid down during its formation may have abnormal migration (they may not go to the right spot) or abnormal differentiation (when a cell changes from one cell type to another) and later develop into endometriosis.
Endometriosis has in fact been found during autopsy in some female fetuses (who died for other reasons). This theory of embryonic origin explains:
- how endo can be found anywhere in the body.
- how endo has been found in a few biological males, as fetuses have both the male and female reproductive tracts during the first 6-8 weeks in the womb. One regresses and the other develops, so the fetus becomes either male or female, continuing to develop that specific tract.
- why endo is found in embryonic patterns in the body, doesn’t typically spread, and has low recurrence after true excision.
The standard of care for endometriosis is disgraceful, especially for a disease that affects 1 in 10 people assigned female at birth. We need a cure. We need recognition. We need to go to the doctor and be taken seriously when we say we are terrified to get our periods because of the crushing pain that it brings. We need funding for endometriosis research. We need education in schools and even among doctors that period pain is not normal, painful sex is not normal, and painful bowel movements are not normal. It shouldn’t take 10+ years to be diagnosed with such a common disease, and once diagnosed, we should have access to excision to remove the disease from our bodies, instead of being offered subpar treatments based on misinformation.
Not only do endometriosis patients grapple with chronic and often debilitating pain that ravages our lives, often affecting our relationships, our careers, and our mental well-being, but we face dismissal and lack of education from the very medical professionals who we are supposed to turn to for help. The psychological impact on us is double. We are weighed down by the crippling symptoms and lack of treatment, and weighed down again by being told that it isn’t real and that we should see a psychologist for what these medical professionals perceive as “anxiety.”
Many of us with endo begin having symptoms from 9, 10, 12 years old. It is heartbreaking to me that from such a young age, we go through so many trials and tribulations because we are fighting not only against endometriosis, but against a system of misinformation, dismissive doctors, lack of access to expert care, all while battling the pain, fatigue, nausea, doubt, and more.
The endometriosis community is an incredible group of womxn, nonbinary folx, and trans people, and we will keep advocating so that future generations don’t have to suffer as we have.