Endometriosis

Around the world, 200 million people suffer from endometriosis

What is endometriosis

 Endometriosis is a systemic inflammatory disease affecting the whole body. Endometriosis is comprised of hormone responsive lesions which produce their own estrogen. It commonly occurs on the pelvic structures, causing severe pain, bowel, bladder, or other pelvic organ dysfunction, inflammation, scarring, adhesions (which are fibrous bands of dense tissue), organ dysfunction, immunologic abnormalities, endocrine alterations, and infertility. However, there are also extra-pelvic forms of endometriosis. These forms are particularly understudied, and more likely to be dismissed, but they are not rare as previously thought. Current research estimates that endometriosis also occurs in the chest cavity, lungs, and diaphragm, the liver, the stomach, the brain and brain stem, and the pelvic nerves including the sciatic nerve. Once thought of as a female only disease, endometriosis has also been located in persons with male phenotype, at the bladder, near the spermatic cord, epididymis, vas deferens, testes, prostate, and abdominal wall. Endometriosis lesions are NOT normal endometrium found elsewhere in the body.

Causes

  • One of the first theories was called Sampson’s Theory of Retrograde menstruation - this theory, that the cause of endometriosis is the result of   endometrium that traveled backwards onto the peritoneum (membrane lining of the abdomen) and ovaries, implanting there,  has been disproven.  We know that endometriosis is not comprised of actual endometrial cells that are back flowed and behaving abnormally.

    Despite studies that have been done to disprove this theory, unfortunately it is often referred to when explaining endo, confusing the public’s understanding of the disease. It’s essential that we understand there are various factors that contribute to the disease pathophysiology and pathogenesis, because this misinformation most often leads to failed concepts of treatment like hysterectomy, drug therapy, and incomplete surgery.

  • Another, more promising, theory is a form of immunologic dysfunction which allows for endometriosis lesions to take hold. Though immune dysfunction may play a role in lesion development, endometriosis is not considered an auto-immune disease. It may be linked to several auto-immune disorders and share an underlying pathophysiology.  Sometimes the immune dysfunction is explained as Apoptosis Suppression  (the inability of the immune system to destroy ‘foreign/enemy cells’.  Endo produces inflammatory cytokines and other immune factors that inflame and promote growth of the lesions. It also shares many features with other immune diseases such as lupus and rheumatoid arthritis, including angiogenesis, or the ability of the lesions to establish a blood supply.

  • There are two parts to the immune system, the innate and the adaptive.

    The innate immune system should be taking care of endometriosis lesions, but for some reason it’s not doing its job correctly. It’s been found that endo sufferers have lower natural killer cell activity in their abdominal fluid and reduced phagocytosis by macrophages, even though macrophages are present. The immune system should be removing these lesions, but instead its releasing inflammatory cytokines and angiogenesis to support more development of endometriosis.

    The adaptive immune system in endo sufferers is also abnormal, with more b-cells, t-cells, and antibodies present. This means that we know those with endo are going to have a different immune environment in their bodies than those without it. 

  • Most of your immune function is located in your gut, and endometriosis is closely linked to bowel disease. So another theory to the cause behind endo is gut microbial dysbiosis. Endometriosis lesions and adhesions can occur directly on the bowels themselves, and intestinal permeability can lead to translocation of harmful bacteria from the gut to the pelvis and reproductive organs. These bacteria like E. Coli produce a lipopolysaccharide toxin, found 4-6 times higher in the menstrual blood of endo sufferers,  which promotes endometriosis and inflammatory disease in general.

  • Another theory cites genetic factors, as there appears to be an increased 7-10 fold risk of endometriosis in those who have a mother or relative with the disease. Dysfunction of HOX genes may also result in abnormal differentiation and migration of cells during embryonic formation of the reproductive tract. Endometriosis has been found in fetuses, suggesting that there Is an embryologic origin, as popularized by Dr David B Redwine MD.

  • And then there is the theory related to environmental toxins which cause cell changes, allowing for lesion implantation and dysfunctional Immune response. Particularly, endometriosis has been studied in relation to the chemical groups known as dioxins and diethylstilbestrol, especially when dioxins were exposed while you were in the womb.

  • Stem cells have been linked to endometriosis, because they’ve demonstrated the ability to populate lesions, even in the absence of menstruation. This many explain the presence of endometriosis in phenotypically male bodies.

  • Despite the many theories, there is no single set of criteria which can account for all cases of the millions of people that are affected with endo. It is most likely that individuals are born with mechanisms which can trigger the disease at some point in life. This is probably the result of complex genetic and molecular factors, it is not a lifestyle disease, a hormonal disease, or psychological disorder.

    Many people are surprised to learn that endo is not a hormonal disease because it is often associated with estrogen. Estrogen does not cause endometriosis, so it’s not the case of having too much estrogen, because even normal amounts of estrogen can stimulate the growth of endo lesions. On the other hand, progesterone seems to have a positive effect on endo lesions by slowing their growth, though endo sufferers tend to have some amount of progesterone resistance.

Symptoms

  • The centralizing symptom to all endometriosis is pain. Endometriosis patients are more likely to report ‘throbbing’ type of pain along with a group of other unique symptoms to their condition.

    • Chronic pelvic pain

    • Pelvic pain that gets worse after sex or a pelvic exam

    • Abdominopelvic pain apart from menses

    • Chronically heavy or long periods

    • Bowel or urinary disorders, often associated with periods

    • Painful sexual activity, particularly with penetration

    • Significant or debilitating lower back pain with menses

    • Allergies, migraines or fatigue that tends to worsen around menses

    • Crippling menstrual pain

  • “Pelvic endometriosis” is traditionally defined as lesions of the tubes, ovaries and local peritoneum; “extrapelvic endometriosis” is wide-ranging and refers to lesions that are found on the gastrointestinal tract, urinary tract, pulmonary system, extremities, skin, central nervous system, and even areas of the brain and nerves. There are also rarer manifestations of the disease.

    The classic pelvic endometriosis symptoms may include, but are not limited to severe painful menstruation and inability to use insertion products due to pain, chronic abdomino-pelvic pain, constipation, rectal bleeding, bowel or bladder pain & symptoms, chronic fatigue, and infertility.

    In intestinal endometriosis, sharp knife like pains that are from the rectum to other parts of the pelvis are reported.

    In bladder endometriosis, UTI-like symptoms are reported, where there is difficulty urinating and severe pain with urination. 

    • In thoracic (chest) endometriosis, coughing up blood, not being able to catch your breath, tight chest, pain in the chest and ribs, and lung collapse is reported. 

    • Catamenial pneumothorax - air leaking into the chest cavity (with lung endometriosis)

    • In sciatic endometriosis, leg and lower back pain is reported. 

    • Headaches that start at the base of the skull and radiate all overthe head

    • Lower back and legs may also feel burning, dull pain, sharp pain, or shooting pains.

  • Due to the stigma, dismissal, under diagnosis, and lack of access to appropriate care, there is a significant psychological and social impact of living with endometriosis such as depression and other mood conditions. Endo has a profound impact on peoples every day lives. As you can see from these symptoms, each person is going to have a unique mix of them and it cannot be looked at through the lens of the reproductive organs alone. It’s much more likely that there are multiple body systems involved in the symptoms of endometriosis.

Diagnosis and Stages

  • Endometriosis cannot truly be diagnosed without surgery. Pharma-backed researchers have supported the concept of a “medical diagnosis” but know that there is no definitive diagnosis based on medical history and symptoms alone. Endometriosis presents with many different types of symptoms depending on the person, which is why non-biopsy approaches hinders progress towards diagnosis. Surgical diagnosis via lapropscopy must be taken seriously. 

  • Based on laparoscopy results, endo is categorized in four stages.

    Minimal, shallow lesions (again this does not mean that they are not excruciating painful regardless) are representative of stage 1.

  • More lesions which are deeper than stage 1

  • Deep lesions, the presence of endometrial cysts (where tissue attaches to an ovary and begins to shed blood and tissue resulting in a cyst), and adhesions (scar tissue that forms from the body attempting to heal, this can bind organs together)

  • Many deep lesions, large cysts, and many dense adhesions throughout the affected region 

  • The only way to confirm a diagnosis of endometriosis is surgically. Symptoms and diagnostic testing like MRI’s, ultrasounds, and CT scans may allow for an “informed suspicion” that endometriosis is present, but they are most helpful for pre-surgical planning.

    The reason why laproscopy is so important is because it allows for actual treatment of the disease.

    Recently, there has been a pharmaceutical sponsored marketing campaign to liken patients to the idea of medical endometriosis diagnosis, and despite over 50 biomarkers which have been studied looking for a blood test or other non-invasive diagnosis tool, none have had universal success. 

Treatment

  • Remove the endometriosis fully with excision surgery is the gold standard treatment.

    The sooner the disease can be properly diagnosed and eradicated, the better the long term outlook for a person’s quality of life.

    Laparoscopic Excision surgery allows for the disease to be carefully removed from all affected areas, without damaging adjacent internal areas or removing otherwise healthy organs. It is imperative that the surgeon have the necessary skills and knowledge of the anatomy of pelvic or extrapelvic nerves and vessels.

    If you are looking for an excision surgeon, you need to ask them about their speciality knowledge of neurology, urology, gastroenterology, neuropelveology, as well as gynecology. The reason this is so important is because an incomplete operation may change the anatomical conditions, adhesions, and scar tissue can make further surgical intervention more difficult in the future.

    Even experienced surgeons performing excision have found some reoccurrence of post-surgical endo in patients. It is extremely important that you determine which tool and method your surgeon will be using, as there are a number of surgical approaches.

    A trained excision surgeon is also critical when persistent, bowel, bladder and/or extrapelvic disease are involved.

  • Endometriosis cannot be sufficiently treated through medical suppressives. Hormonal suppression with contraceptives has “no effect on adhesion of endometriotic cells and cannot improve fertility” - consider switching to a different provider if you are told that medical management and “diagnosis” by “treating without seeing” through medical suppression is adequate. It is most definitely not, and will only allow the disease process to advance unchecked.

    Drug companies are preying on people in severe endometriosis pain and targeting them with useless medical solutions.

    Dangerous drugs like Orilissa are often promoted without presenting the debilitating physical and mental side effects. There are other concerns that Orilissa leads to bone mineral density loss, suicidal thoughts, worsening of mood, and liver problems like jaundice, as well as headaches, nausea, insomnia, anxiety, and depression. As we know endo patients already suffer with these psychological issues as a result of living with the disease, it is another concern that doctors would push a type of pain management that could potentially be more detrimental to a persons well being than it is able to relieve pain.

  • Limited ablation surgery, as opposed to excision surgery, only skims or burns the top of the area and leaves pieces of the endometriosis behind.

    This is problematic and results in poor outcomes because it may result in more adhesion formation and disease proliferation, more surgical risks, increased expenses, and additional procedures.

    Excision is only practiced by a select number of advanced gynecologic-endoscopic surgeons, and it differs from methods of laser vaporization and electrocautery as performed by OBGYN’s.

    These less meticulous techniques destroy tissue, and make microscopic evaluation of the tissue impossible.

  • Hysterectomies don’t eliminate endometriosis, especially if it occurs outside the uterus. Similarly, removing healthy ovaries doesn’t eliminate endometriosis. Because endometriosis lesions create their own estrogen, the disease proliferates post menopause whether natural, chemical, or surgical.

    Don’t work with surgeons who suggest these failed strategies as they fundamentally misunderstand the condition.

  • There are also alternative therapies such as physical therapy, acupuncture, aromatherapy, myofascial release therapy, dietary regimens and other coping mechanisms for chronic pain that include mental health practices as well as certain nutritional protocols. These may be helpful to mitigate symptoms and reduce pain, but likewise, they do not treat the root of the disease.

Post Op Care

  • Aim for 7-9 hours of quality sleep each night to support overall healing. Expect to need short naps during the day, especially during the initial recovery period.

  • Immune modulators help to prevent reoccurrence by correcting underlying immune dysregulation after excision surgery. Curcumin paired with black pepper, Resveratrol, Bioflavonoids (Grape Seed Extract, Pine Bark Extract, Green Tea ECGC), Glutathione / N-Acetyl Cysteine, Slippery Elm, Marshmallow Root, and L-Glutamine may be of assistance.

  • Hold your belly and walk around the house. Practice diaphragmatic breathing to enhance oxygenation and reduce tension. Low-impact exercises like stretching promote flexibility, improve circulation, and mobility.

  • Anti-inflammatory teas like fresh shredded ginger with black/green/puer tea, nettles, rooibos, rosehip, spearmint, and turmeric with a pinch of black pepper

    Bone Broth contains amino acids, collagen, gelatin, and trace minerals which nourish the gut lining and reduces inflammation

    Okra stew contains mucilage, helpful for inflammation in the gut.

  • Listen to your body, pay attention to your body's signals, and adjust activities accordingly. If prescribed medications or taking supplements, take them as directed and report any side effects promptly.

How Charting Can Help With Endometriosis

  • Despite the charts not being able to diagnose you with endometriosis, there is still a lot of good they can do for in terms of keeping track of your symptoms, pain triggers, and to see if there are any other coexisting endocrine issues happening. It helps you put together your constellation of symptoms by utilizing custom categories of your choosing and can help you recognize specific endometriosis patterns.

  • Charting can be useful for tracking your recovery process post-excision surgery. Daily intentional charting helps you understand you body’s new baseline normal or if anything changes.

  • Charting can help you plan to get pregnant if you so choose. The chart can give you a good read on your estrogen and progesterone levels, as well as knowing whether or not you are ovulating at all.

  • Charting can also be useful for tracking your emotional state and correlations with other symptoms.

  • Charting helps keep you accountable to your personal regimen whether that is certain supplements or other mental health practices. When you can see things laid out in the chart, they become clearer and easier to analyze than you just experiencing it day to day, especially over time.

    Hopefully in the future more doctors will also learn to utilize menstrual chart biodata for the asset that it is, and patients and providers can work together to use the information to help create more individualized and thoughtful care.

Fertility with Endo

  • Endometriosis is a debilitating full body disease which alters the lives of those who are diagnosed. This can be compounded if the person wants to become pregnant. Endometriosis is a major cause of infertility.

    This may be because of several factors, including the first which is painful sex, or adhesions which prevent egg transport, endometriosis preventing ovulation, anatomical impairments which make natural conception impossible such as fallopian tubal factors, complications related to ovarian reserve, oxidative stress, inflammatory pelvic environment, or other coexisting endocrine disorders. 

  • When pregnancy is achieved, the vast majority of people with endometriosis will have healthy live births, and there is no correlation between endometriosis and C-section or adverse pregnancy outcomes. 

  • If a pregnancy is desired, collaborative approaches to endometriosis infertility care are essential to working towards the outcome. Pregnancy attempts can begin 1-3 cycles after excision surgery, depending on the situation. The sooner endometriosis is addressed, the better likelihood of maintaining healthy fertility.

  • Endometriosis must be addressed with excision surgery in a timely manner in order to prevent infertility complications.

Myths with Endo

  • Myth: Endometriosis lesions are the same as normal endometrium

  • Reality: Lesions have glands and stroma like endometrium but have distinct and separate characteristics, such as that lesions lack the adequate structure to bleed and slough, and the lesions ability to create its own estrogen independent of the hormonal cycle. The presence of this estrogen causes inflammation in surrounding tissues and may cause blood vessels to rupture and bleed.

  • Myth: Endo only occurs in women

  • Reality: Endo can occur in any sex and has been found in those with typical male phenotype at the bladder, near the spermatic cord, epididymis, vas deferens, testes, prostate, and abdominal wall.

  • Myth: Endo is a reproductive disease

  • Reality: Symptoms can start pre-menarche and persist post menopause inside and outside the reproductive system. Deep disease has been found in teens. Symptoms can persist post menopause if disease remains (proliferating due creating its own source of estrogen). No birth control or hormonal intervention reduces risk of disease development, they only somewhat manage symptoms.

  • Myth: Extrapelvic endometriosis is rare

  • Reality: Extrapelvic Endo is not rare, merely under-diagnosed due to lack of knowledge of the disease by many practitioners.

  • Myth: Endometriosis is sticky

  • Reality: Lesions themselves aren’t sticky, but they irritate the surrounding tissue causing an immune repair response in the body where fibrosis & adhesions may then occur.

  • Myth: Endo is an “internal period” causing lesions to bleed when you menstruate

  • Reality: Endometriosis lesions do not bleed and slough during the menstrual bleed time because they lack the structure to do so. Endometriomas (“chocolate cysts”) are endo lesions that occur on the ovaries.

  • Myth: Endometriosis is cured by pregnancy, hysterectomy, or menopause

  • Reality: The only true treatment for endometriosis is excision surgery to effectively remove the lesions.