created: 2023-12-28T10:23
updated: 2024-03-29T12:37Endometriosis Notes
This page should be considered a living document, and does and will change with time. I first started working on it throughout 2020 and 2021, and it has changed greatly since.
Because:
I have created this resource list.
Related Wiki Pages:
This entire section is a work-in-progress:
L'endométriose est une maladie gynécologique chronique. Elle se caractérise par la formation de tissus semblable à la muqueuse utérine, formés de cellules endométriales, en dehors de l'utérus. On parle donc d'endométriose lorsque de l’endomètre, qui tapisse l'intérieur de l'utérus et est normalement évacué avec les menstruations, se forme ailleurs que dans l'utérus. Le tissu endométrial réagit aux fluctuations hormonales du cycle menstruel. Ainsi, tout comme la muqueuse utérine, il se forme, puis « saigne » chaque mois. Cependant, lorsque ce tissu se situe à l’extérieur de l’utérus, les saignements n’ont aucune issue vers l’extérieur du corps. Le sang et les cellules endométriales qui se détachent irritent les organes avoisinants et le péritoine, la membrane qui renferme les organes de l’abdomen. Cela peut aussi entraîner la formation de kystes (de la taille d’une épingle à celle d’un pamplemousse), de tissu cicatriciel, ainsi que d’adhérences qui relient les organes entre eux et causent des douleurs.
L’inflammation et la synthèse d’hormones stéroïdiennes sont les mécanismes principaux favorisant l’implantation et la croissance des lésions. La douleur associée à l’endométriose peut être expliquée par la nociception, l’hyperalgie et la sensibilisation centrale, associées à des degrés divers chez une même patiente. La typologie des douleurs (dysménorrhée, dyspareunie profonde, signes fonctionnels digestifs ou urinaires) est corrélée à la localisation des lésions (NP2).
Bien que ce soit un problème gynécologique très fréquent (10 % des femmes selon l’Inserm), l’endométriose reste malheureusement très sous-diagnostiquée. Elle est habituellement découverte entre 25 ans et 40 ans, lors de consultation pour des problèmes d’infertilité. Il n’est pas rare de voir de très jeunes personnes atteintes d’endométriose, et lorsqu’on les interroge, la plupart des patient-e-s présentant des atteintes sévères se plaignent d’avoir souffert depuis la puberté de douleurs gynécologiques violentes sans que leur médecin n’ait évoqué une possible endométriose. Un retard de diagnostic lourd de conséquence puisqu’il laisse à la maladie le temps de prendre de l’ampleur et de causer des dommages souvent irréversibles à différents organes.
L’endométriose est une maladie multifactorielle, résultant de l’action combinée de facteurs génétiques et environnementaux.
L’endométriose est une maladie hétérogène dont on distingue trois formes, souvent associées entre elles :
L’endométriose profonde est fréquemment multifocale et touche principalement les structures suivantes : ligaments utérosacrés, cul-de-sac vaginal postérieur, vessie, uretères et tube digestif (rectum, jonction rectosigmoïdienne, appendice) (NP2)
The mechanisms are very poorly understood, and the terminology lends itself to confusion («stades» or "stages"); not all endometriosis cases advance.
According to this document by the French Haute Autorité de Santé (HAS, page 17):
L’histoire naturelle de la maladie est difficile à préciser en raison des nombreuses interventions auxquelles elle est exposée: traitement hormonal, chirurgie, grossesse, stimulation ovarienne, etc. Ces interventions peuvent évidemment modifier l’évolution naturelle des lésions. Il n’existe aucune donnée solide dans la littérature médicale pour accréditer le caractère progressif de la maladie, recouvrant le risque d’augmentation en taille ou en volume des lésions et le risque de dissémination des lésions au cours du temps. La classification ASRM (American Society for Reproductive Medicine) de la maladie, en quatre stades, sur le modèle des classifications de la FIGO utilisées pour les cancers gynécologiques, induit faussement l’idée d’une progression de la maladie. L’utilisation du terme « stade » suggère au grand public que si une patiente est actuellement porteuse d’une endométriose stade I ou II, elle pourrait évoluer vers les stades III ou IV quelques années plus tard. Aucune donnée scientifique n’accrédite ce risque d’évolution depuis une forme légère ou modérée vers une forme sévère. Au contraire, les seules données publiées accréditent l’idée d’une stabilité globale des lésions.
Retrograde menstruation – ‘Sampson’s Theory’, which dates back to the 1920s, is perhaps the most popular of theories. Initially, Dr John Sampson held that endometriosis was the result of “seedlings” from the ovaries. Later, in 1927, he proposed the disease results from reflux menstruation, wherein endometrium is “showered backwards” onto the peritoneum and ovaries, taking hold and implanting. However – endometriosis lesions and the normal endometrium are NOT histologically identical - something Sampson himself acknowledged, and retrograde menstruation is a very common phenomenon among most menstruators - yet not all will develop endometriosis. Essentially, Sampson’s Theory considers endometriosis as otherwise normal endometrial cells which behave abnormally because of abnormal peritoneal milieu; however, this is often critiqued in the current literature. Multiple studies have demonstrated that retrograde menstruation cannot account for all pathogenesis and that the eutopic and ectopic endometrial stromal cells in those with endometriosis exhibit fundamental differences in invasive, adhesive, and proliferative behaviors from those who do not have the disease. Again, normal endometrium is histologically different from the functional glands and stroma that comprise endometriosis lesions. Contrary to popular public doctrine, while the tissues do resemble each other – they are not identical. As such, there are various additional factors that must contribute to disease pathophysiology and pathogenesis which simply cannot be explained by retrograde menses alone. — Source: Center for Endometriosis fact page: https://centerforendo.com/endometriosis-understanding-a-complex-disease
Retrograde menstruation theory is the oldest principle explaining the aetiology of endometriosis. This theory proposes that endometriosis occurs due to the retrograde flow of sloughed endometrial cells/debris via the fallopian tubes into the pelvic cavity during menstruation. However, retrograde menstruation occurs in 76%–90% of women with patent fallopian tubes and not all of these women have endometriosis. The larger volume of retrograde menstrual fluid found in the pelvises of patients with endometriosis as compared with healthy women may increase the risk of endometriotic lesions implantation. In non-human primate models, it is possible to induce endometriosis by inoculating autologous menstrual products simulating retrograde menstruation in the peritoneal cavity of baboons and macaques — Source: "Theories on the Pathogenesis of Endometriosis": https://www.hindawi.com/journals/ijrmed/2014/179515/
According to Dr Andrea Vidalia, shared on his Instagram : https://www.instagram.com/p/CbS4XF-ug6R/
One of the biggest myths holding back advancements in endometriosis today is the theory of retrograde menstruation. Let's think about some of the reasons why retrograde menstruation as the cause of endometriosis may be limited:
- 1. Reflux Menstruation is a normal occurrence, which would mean everyone who menstruates has reflux menstruation, but not everyone who menstruates has endometriosis
- 2. You don't need to have a uterus to have endometriosis. Plenty of reported cases in people who never had a uterus to "shed lining " to cause their disease.
- 3. Endometriosis is present in post menopausal people, there is no retrograde menstruation if someone is not menstruating and still endometriosis can be found in that population.
- 4. Post salpingectomy, or tube removal, endometriosis continues. If retrograde menstruation were true then someone could remove the tubes, stop retrograde menstruation and endometriosis would be over. We all know this is not true. Same for hysterectomy.
- Endometriosis has been found in those assigned male at birth, it happens—though infrequently—and it has nothing to do with retrograde menstruation.
The coelomic metaplasia theory provides a theory for the pathology of endometriosis (a condition where endometrial tissue grows outside the uterus). The coelomic epithelium develops into: peritoneum, pleura and the surface of the ovary. This combines retrograde and metaplasia and can explain the distant sites of endometriosis.
Coelomic epithelium refers to the epithelium that lines the surface of the body wall and abdominal organs. It constitutes the outermost layer of the male and female gonads, thus forming the germinal epithelium of the female or of the male. It is also called the germinal epithelium of Waldeyer or sometimes the superficial epithelial cells in embryology. It is often encountered in the medical setting as an important source of various types of ovarian cancer, primary peritoneal serous cancer and endometriosis (coelomic metaplasia). ,
There seems to be a great deal of conflicting evidence here.
Despite the fact that several studies have attempted to examine the impact of hormonal-based contraceptives on the development of adenomyosis, a consensus has yet to be reached. For example, two studies examined the incidence of adenomyosis in women who underwent hysterectomy and found no association between the presence of disease and history of hormonal contraceptive use (oral contraceptives and intrauterine device) (Parazzini et al., 1997, Parazzini et al., 2009). On the contrary, Templeman et al. (2008) conducted a population-based cohort study in which a significant association between contraceptive use and adenomyosis emerged. Of the women in this study who previously and/or currently use oral contraceptives, 84% had endometriosis and 80% had adenomyosis. Moreover, women who formerly used oral contraceptives were 54% more likely to have a pathology-confirmed adenomyosis diagnosis (POR = 1.54, 95% CI = 1.28-x-1.85) (Templeman et al., 2008). Results from this study suggests a history of oral contraceptive use is positively associated with the presence of adenomyosis; however, it unclear whether these women used contraceptive methods for birth control or to treat symptoms of disease (e.g., heavy menstrual bleeding and pelvic pain). Therefore, it is possible that adenomyosis-related symptoms lead to contraceptive use as opposed to contraceptive use being a risk factor for disease development. — Source : https://www.frontiersin.org/articles/10.3389/fphys.2021.807685/full
While Dienogest is approved for the treatment of endometriosis in Canada, Europe and several countries in Latin America and Asia-Pacific, it has not been approved by the U.S. Food and Drug Administration (FDA).
"Dienogest is an oral progestin approved for endometriosis treatment in 157 countries, including 15 countries in Asia. Dienogest is an attractive option for prolonged treatment due to a moderate suppression of estrogen levels and a low androgenic, mineralocorticoid, or glucocorticoid activity. Long-term studies in Europe and Japan demonstrated that dienogest is efficacious in reducing pelvic pain, well tolerated and has a good safety profile." — Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8907083/
Danazol, sold as Danocrine and other brand names, is a medication used in the treatment of endometriosis, fibrocystic breast disease, hereditary angioedema and other conditions.
The use of danazol is limited by masculinizing side effects such as acne, excessive hair growth, and voice deepening. Danazol has a complex mechanism of action, and is characterized as a weak androgen and anabolic steroid, a weak progestogen, a weak antigonadotropin, a weak steroidogenesis inhibitor, and a functional antiestrogen.
Sources for the above include the January 2022 Guardian article by Natalie Parletta, mirrored here: https://www.dropbox.com/s/8x7vrgz0kzcgfkd/2022%2001%2017%20How%20to%20move%20with%20endometriosis%20The%20Guardian.pdf?dl=0 (Though sadly it looks like the article cites really unscientific studies, so there's going to have to be a lot more digging here.)
See Endometriosis Corner of Shame, there is a section there called: Yoga and Treatment of Pain Associated with Endometriosis.