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.
Below you will find:
- Quick Facts
- What is Endometriosis
- Delay in Diagnosis
- Treatment (with info on how to find a doctor)
- My Thoughts
There’s more endo and health links on my Resources page!
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. Endo 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 (or 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 endo specialist – not just any gynecologist.)
You can have endo pain post-hysterectomy or post-menopause.
Endo 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 endo 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.
Teens, premenarchal, and postmenopausal people assigned female at birth can have endometriosis. There is no age too old or too young. Endometriosis has been found in fetuses as well as people in their 70s!
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. Medication can’t diagnose endo (for example: having less pain on a medication such as Lupron doesn’t mean you have endo.) There is no blood test that diagnoses endo.
There are 2 types of surgery: ablation (superficial burning of endometriosis) and excision (cutting out at the root). With excision, the rate of recurrence (endo 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 excision specialists 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).
Related Podcast Episodes
- Ep 12 – Common Endometriosis Myths
- Ep 58 – Endometriosis Interview with Heather Guidone, BCPA, CEC Program Director
- Ep 59 – Endometriosis Interview (Part 2) with Wendy Bingham DPT, Founder of ExtraPelvic Not Rare
- Ep 60 – Endometriosis Interview (Part 2) with Wendy Bingham DPT, Founder of ExtraPelvic Not Rare
What is Endometriosis?
Endometriosis is tissue similar to the endometrium (the uterine lining) but is NOT the endometrium, despite what many misinformed websites and even doctors say! These endometriosis lesions shouldn’t be in the body. While endo is most commonly found on the reproductive system, it has been found in all 11 body systems. Patients with endometriosis may have it on the ovaries, peritoneum (lining of the abdomen cavity and organs), bowel, bladder, uterosacral ligaments, rectovaginal septum, lung, diaphragm, or other parts of the body.
There are generally three accepted forms of endometriosis: Superficial (lesions are less than 5mm below the peritoneal surface), Ovarian Endometrioma (a cyst caused by endo on the ovary; also known as chocolate cysts), and Deeply Infiltrating Endometriosis (when lesions are more than 5mm below the peritoneal surface). DIE is considered the most severe form of endometriosis.
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, the formation of scar tissue and adhesions, new blood vessels to grow in surrounding tissue (angiogenesis), and pain.
Endometriosis is often staged using the American Society for Reproductive Medicine Classification System (ASRM). This categorizes endometriosis into 4 stages. Stage I is minimal endometriosis, Stage IV is the most severe. However, this staging system was designed with fertility in mind. It doesn’t correlate to the level of pain a person has, so someone with Stage I could have more pain than someone with Stage IV. Also, the staging system doesn’t take into account endo in locations such as the bladder, bowels, vagina, cervix, and more locations. The ASRM system has been criticized for having too much focus on the ovaries and adhesions.
For more info
- Endometriosis: A Complex Disease – This is a comprehensive overview of endometriosis from the Center for Endometriosis Care (CEC). I highly recommend you explore their online library of resources on endometriosis! “Led by internationally renowned endometriosis expert Ken Sinervo, MD, MSc, FRCSC, ACGE, the CEC is a global leader in the care and treatment of the disease.”
- What is Endometriosis? – Make sure to check out all the articles in this section on Nancy’s Nook called “What is Endometriosis?”
Related Podcast Episodes
- Ep 38 – Understanding the Types of Endometriosis
- Ep 43 – Rethinking the Name and Definition of Endometriosis
- Ep 47 – The Limitations of the Endometriosis Staging System
- Ep 55 – Endometriosis and Estrogen
- Ep 56 – Endometriosis is NOT the Endometrium. Part 1
- Ep 57 – Endometriosis is NOT the Endometrium. Part 2
Delay in Diagnosis
About 1 in 10 people assigned female at birth have endometriosis. That’s estimated to be more than 200 million people worldwide (of all races, nationalities, and gender identities). 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 in medicine for people assigned female at birth, a racial bias, 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 people assigned female at birth 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 forms 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 visual appearances or locations of endometriosis may miss obvious signs of the disease during an exploratory 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 the endo is located and other factors. 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. 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.
For More Info
- Endometriosis: But your tests are all negative? – Post on Nancy’s Nook
- The visual appearance of endometriosis and its impact on our concepts of the disease – Article by world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
- Why Every Single Medical Professional Needs to Know About Endometriosis – Blog post by Melissa from Eighty-Six the Endo.
Related Podcast Episodes
- Ep 44 – It’s Not in Your Head – Medicine’s Sex and Gender Bias. Part 1
- Ep 45 – Racial Bias in Healthcare
- Ep 46 – Why Science Knows Less About the Bodies of People Assigned Female at Birth
- Ep 48 – Why Is Pain Dismissed in People Assigned Female at Birth?
- Ep 50 – But Doctor, It’s Not Psychosomatic!
- Ep 3 – 9 Tips for Better Medical Care
Treatment (with info on how to find a doctor)
The treatment a person receives for endometriosis typically depends on the doctor’s skills, experience, and knowledge, so when looking for an endometriosis specialist, it’s important to know about the different treatments so you can make an informed decision on your care.
Hormonal therapy – such as GnRh drugs (Lupron, Orlissa, Zoladex, Synarel, Prostap, etc) that medically induce menopause, birth control (the pill, Visanne, Dienogest, Depo Provera, etc) or the Mirena IUD – only manages the symptoms of endometriosis (in some people – not everyone sees symptom relief on these medications). These do not remove the endo lesions, and endo can still progress while on these medications. Additionally, any symptom relief is usually temporary and typically returns when the person stops the medication. Neither a hysterectomy nor pregnancy is a definitive treatment for endometriosis. However, due to misinformation, many gynecologists who are not experts in endometriosis use these various methods as ‘treatment’ for the disease itself. They often wrongly believe that endometriosis will be ‘cleaned up’, ‘dried up,’ or ‘cured’ using one of these treatments, but this is simply not true.
Additionally, no medication can diagnose endo. Some doctors say that if a patient (who is still undiagnosed with endo) has pain relief on Lupron, it confirms that they have endo, but this isn’t true. There are other reasons as well why a person’s pain could go down in a low menopausal state. As stated in the previous section on diagnosis, the only way to have a confirmed diagnosis of endo is through a laparoscopy with a pathology report.
Ablation surgery is the superficial burning away of endometriosis on the surface level. However, the gold standard treatment for endometriosis is excision surgery, because it actually removes the disease completely from tip to root. At many centers for expertise in endometriosis where excision is performed as the surgical approach, the rate of actual disease recurrence/persistence (disease coming back/disease remaining) is around 7-20%. Many people find that their pain is significantly reduced or their quality of life has improved after excision. With ablation surgery however, many people find their pain returns within just months after surgery. With ablation, disease persistence is fully expected, since the endometriosis wasn’t truly removed in the first place (and therefore persists).
Additionally, excision has several more benefits over ablation:
- Excision allows for the removed tissue to be sent to pathology for confirmation that it’s endometriosis, while due to the burning with ablation (and not the cutting out of tissue like with excision), the tissue is often unable to be sent to pathology for confirmation.
- Due to the heat generated with ablation surgery, it usually cannot treat endometriosis on delicate tissues such as the bladder or intestines. With excision, the excision surgeon will often work with a multidisciplinary team, such as a general/bowel/thoracic/etc surgeon, to excise endometriosis from all organs where endo is present.
- The burning of ablation surgery can cause more damage by causing scar tissue and leaving behind thermal damage, which can cause a painful foreign body giant cell reaction. It also leaves behind disease buried under scar tissue.
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 tackle the complex surgical challenges that endo presents.
The majority of gynecologists do ablation surgery, not excision. In 2020, it was estimated that there are only about 200 excision specialists in the US, even though this disease affects an estimated 8 million Americans and 200 million people worldwide! 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. Unfortunately, excision remains a privilege that the majority cannot access instead of being the standard of care that everyone can access, and this is unacceptable, disgraceful, and heartbreaking.
Because endometriosis is a complex inflammatory condition that can affect the full body, it’s recommended that the patient work with a multidisciplinary team with excision at the cornerstone to address the disease from a full-body approach. Additionally, endometriosis may be present with other common co-conditions like Interstitial Cystitis/Painful Bladder Syndrome, pelvic floor dysfunction, small intestinal bacterial overgrowth (SIBO), gut dysbiosis, hormone imbalance, or irritable bowel syndrome (IBS). While many people do have significant improvement in their quality of life after excision surgery, others may need to address co-conditions and secondary pain generators to see more relief.
While excision typically gives the best outcome for removing the disease, there is no shame for choosing to do ablation surgery or choosing to manage symptoms via hormonal medications. What I advocate for is patients being able to make an informed decision. The problem is that many people are not being fully informed by their doctors of the risks or the limitations of treatments. When we have all the information, we can better choose the treatment option that is right for us – one that is affordable, accessible, and makes the most sense to us after having evaluated the risks, benefits, and our personal situation.
For More Info
- Q&A with Dr. Redwine: Is Endometriosis Genetic? If so, why won’t it always recur post-operatively? – Short article by world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
- Excision of Endometriosis – Article from the Center for Endometriosis Care (CEC). “Led by internationally renowned endometriosis expert Ken Sinervo, MD, MSc, FRCSC, ACGE, the CEC is a global leader in the care and treatment of the disease.”
- Why is endometriosis surgery so challenging? – Short article by world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
- Treatment – From Nancy’s Nook, which is an incredible “endometriosis learning library.” This is the first article in their Treatment section, so make sure to check out the rest too!
- Hormonal Medication – From Nancy’s Nook.
- The Standard of Care is Not Sufficient – Post by Dr. Jeff Arrington from the CEC on how general gynecologists have been taught to treat endo.
- Lupron – Informative links on side effects and limitations my Resources page.
- Orilissa – Informative links on side effects and limitations my Resources page.
How to Find an Endometriosis Excision Surgeon
Anyone can call themselves an “expert” in endometriosis, because there is no formal standard in gynecology to qualify to use that title. A doctor might call themselves an endometriosis expert, but is only doing ablation or is only prescribing hormone treatments, and doesn’t even do excision.
A good endometriosis doctor is a highly skilled, high volume physician who understands endometriosis and how to properly diagnose and treat it. Often they solely treat endometriosis and don’t practice obstetrics or general gynecology at all. Even among doctors that do excision surgery, their skill levels and experience vary. Many people are also choosing to go to leading endometriosis centers that perform excision surgery as a component of their multidisciplinary approach to endometriosis, such as the Center for Endometriosis Care in Atlanta.
iCareBetter and Nancy’s Nook (links below) are two great starting places to find an excision surgeon. Even if you find a surgeon using their lists, it’s still important to vet the surgeon and ask questions to make sure they have the appropriate skill level to treat you. Also, just because you have surgery with one of the doctors on their lists doesn’t guarantee that you will be pain free afterward, that you won’t have complications, or that endometriosis won’t persist or recur (but surgery outcomes and complication rates are generally better in the hands of an expert). Likewise, having surgery with an excision surgeon that you found and vetted that aren’t on these lists doesn’t mean you are guaranteed to have a bad outcome. Some excision surgeons do not have a social media platform, are not well-known, or work at academic institutions and rely on referrals instead of advertising to find patients. However, remember that anyone can call themselves an expert in endometriosis, so if you do find a surgeon that isn’t on one of these resources, it’s even more vital to vet the surgeon and ask questions to learn their success rates, complication rates, rates of reoperation/recurrence, ability to treat complicated cases, etc.
- iCareBetter – This platform helps connect patients to endometriosis surgeons via a rigorous peer to peer double-blind vetting process for their surgical and excision skills. “With iCareBetter, patients can ensure their voices are represented in the doctor search process. And they will be able to choose their surgeon based on specific case skills and needs, such as thoracic endometriosis, bowel or bladder involvement, diaphragmatic endometriosis, superficial to deep disease, endometriosis-related infertility and more.” This platform is pretty new, so right now they don’t have many surgeons listed, but this list is growing as they vet more surgeons!
- Nancy’s Nook Facebook Group – This private Facebook group has a list of excision specialists worldwide in the Files section, and in another file Nancy’s Nook explains how the surgeons are chosen/qualify to be put on their list. This is where I found my excision surgeon. You can use the search tool in their Facebook group to see reviews people have posted of these surgeons.
- How to Find a Doctor – A post from Nancy’s Nook, which has a great overview on what matters and what doesn’t matter when choosing a surgeon.
- Questions to Ask Your Surgeon 1 – A list of questions from the Center for Endometriosis Care.
- Questions to Ask Your Surgeon 2 – A list of questions to consider when vetting your excision surgeon, from Melissa at Eighty-Six the Endo.
- Questions to Ask Your Surgeon 3 – Another great list of questions to consider when vetting your excision surgeon, from Kate at Endogirlsblog.
Dealing with Insurance
In many cases, excision surgery is considered out-of-network for US insurance providers. That being said, there are also excision surgeons who are in-network with insurance; it will depend on the individual surgeon.
- Tips for Dealing with Insurance – A post on Nancy’s Nook
- How I Got Insurance to Approve Excision Surgery – A post by Melissa from Eighty-Six the Endo.
Related Podcast Episodes
- Ep 16 – What Effectively Treats Endometriosis?
- Ep 22 – Bowel Endometriosis
- Ep 30 – Orilissa and Lupron. Part 1 – Big Pharma’s Influence on Endo Information
- Ep 31 – Orilissa and Lupron. Part 2A – How Effective is Orilissa?
- Ep 33 – Orilissa and Lupron. Part 2B – How Effective is Lupron?
- Ep 37 – Orilissa and Lupron. Part 3 – Side Effects
- Ep 39 – Lupron. The Potential Long Term Risks
No one knows the cause of endometriosis, but evidence is stacked against the theory of retrograde menstruation. Also known as Sampson’s theory, this theory is that menstrual blood leaks out of the tubes into the pelvis and these bits of endometrium implant themselves in the pelvis where they land and grow into endometriosis. 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 true seems almost impossible. Unfortunately, many ineffective treatment options are based on this unproven theory, at a detrimental cost to us patients.
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 – one 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 (with involvement of the HOX genes). The Mullerian duct is the very beginnings of the reproductive system that will later form the fallopian tubes, uterus, uterine cervix, and superior aspect of the vagina. 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.
In fact, endometriosis has been found during autopsy in some fetuses assigned female at birth (who died for other reasons) at around the same rate, 10%, that it is found in the population of people assigned female at birth today. The theory of embryonic origin explains:
- how endo can be found anywhere in the body.
- how endo has been reported in the medical literature in around 20 people assigned male at birth. This is because as fetuses, we have the beginnings of both the (what’s considered) “male” and “female” reproductive tracts during the first 6-8 weeks in the womb. Typically, one regresses and the other develops, so that the fetus has that specific set of reproductive organs. However, cells from the reproductive track that regressed can remain behind.
- why endo is found in embryonic patterns in the body and has low recurrence after true excision.
“The definitive cause(s) of endometriosis remain under debate, though demonstrated association with a number of hereditary, environmental, epigenetic and even certain menstrual characteristics exist. Current research implicates HOX genes, mesenchymal stem cells and certain immunologic factors in disease origin; nonetheless, no single theory explains endometriosis all those affected; more likely, a composite of several mechanisms is involved.” [Quote from the Center for Endometriosis article: Endometriosis: a Complex Disease]
For More Info
- Theories of origin – Link to Endopaedia, a website that represents the life’s work of world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
- Mülleriosis: The best-fit theory of the origin of endometriosis – Dr. David Redwine’s theory that we are born with endometriosis.
Related Podcast Episodes
- Ep 15 – What Causes Endometriosis?
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, and research that isn’t focused on proving the outdated theory of retrograde menstruation. 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. Some doctors even refuse to treat people with endometriosis who are not experiencing infertility or trying to get pregnant, completely disregarding that the other symptoms such as pain, fatigue, and digestive problems are severely diminishing our quality of life.
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 debilitating 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’s 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 people, and we will keep advocating so that future generations don’t have to suffer as we have.
For more info
- Nurses Know Endo – Initiative by EndoWhat to send an Educational Toolkit to school nurses. “School nurses are usually the first to know when teenagers have endometriosis symptoms. To properly educate them would make an enormous impact in decreasing the delay in diagnosis.”