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Endometriosis Facts

'Endometriosis is a systemic, inflammatory disease characterised by the presence of endometrial-like tissue found in extra-uterine sites.'

Kennedy S. et al., 2005; Klemm et al., 2018; Saunders et al., 2021. 

is estimated to affect 1 in 10 AFAB worldwide

is linked to

autoimmune

disorders

cannot be cured by pregnancy, hysterectomy, "the coil" or "the pill"

pain can occur before your first period

Endometriosis:
• is a chronic, inflammatory disease
• is estimated to affect 1 in 10 women worldwide
• is defined as “the presence of endometrial-like tissue occurring outside of the uterus” (Kennedy et al., 2005)
• is not an STI
• is not contagious
• has been described in three types: peritoneal superificial, ovarian endometriomas and deep infiltrating endometriosis (DIE)
• has a strong genetic influence (Fung & Montgomery, 2018)
• mainly affects women
• can affect patients before menarche (first period), and after menopause (periods have ended), not just those who menstruate (Jabr & Mani 2014., Batt & Mitwally 2003, Brosens et al., 2013, Rolla 2019)
• is not caused by retrograde menstruation (the back flow of menstrual blood into the pelvic cavity) (Redwine, 2013)
• is linked to autoimmune disorders (lupus, rheumatoid arthritis, MS, Sjogren’s Syndrome, inflammatory bowel diseases [such as Crohn’s disease and ulcerative colitis] and coeliac disease) (Sinaii et al., 2002; Nielsen et al., 2011, Jess et al., 2012)
• may exist alongside adenomyosis / fibroids / interstitial cystitis (IC) / pelvic floor dysfunction (PFD) / adhesion-related disorders
• cannot be cured by hysterectomy (endometriosis occurs outside of the uterus and is not caused by backwards periods, removing the uterus will not remove endometriosis; hysterectomy may be a suitable option for patients with adenomyosis, patients with endo and adeno opting for a hysterectomy should have all endometriosis excised at the same time by an experienced endometriosis surgeon)
• cannot be cured by pregnancy (endometriotic lesions will remain unless removed by excision surgery)

• has been recorded occurring in all areas of the body including the spleen (vagina, diaphragm, liver, lungs, brain, Caesarian scar, umbilicus, pericardial cavity, cutaneous examples and so on)

What endometriosis is not:

  • the endometrium - i.e. the lining of the womb that sheds during your period

  • cancer

  • a menstrual disease (occurs in non-menstruators)

  • a gynaecological disease (extra-pelvic disease extensively documented, such as thoracic endo [on the lungs] and diaphragmatic endo)

  • curable by hysterectomy

  • curable by pregnancy

  • curable by hormonal contraceptives (other names include "the Pill", OCP, BC, birth control pill, HCs)

  • curable by hormonal treatments such as GNrHa's like Zoladex

  • impossible to treat

Endometriosis is influenced by:

  • Genetic factors (paternal and maternal)

  • Epigenetic factors*

  • Hormonal fluctuations during the menstrual cycle

  • The female sex hormones oestrogen and progesterone

Even with ZERO symptoms you can still have endometriosis 

*Epigenetics is the study of how your behaviours and environment can cause changes that affect the way your genes work. Unlike genetic changes, epigenetic changes are reversible and do not change your DNA sequence, but they can change how your body reads a DNA sequence.

Warning: surgical photos below

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Examples of histology and surgical photos of endometriosis taken from

Endometriosis: A Concise Practical Guide to Current Diagnosis and Treatment

Liselotte METTLER, Ibrahim ALKATOUT, Jörg KECKSTEIN and Ivo MEINHOLD-HEERLEIN

© 2017 Endo Press (Fig. 1.23, 1.35, 1.72, 3.12, 3.64)

© Dr Andrea Vidali November 2020

Journal references:

ESHRE guideline for the diagnosis and treatment of endometriosis, Kennedy et al., 2005

Genetics of endometriosis: State of the art on genetic risk factors for endometriosis, Fung & Montgomery, 2018

An unusual cause of abdominal pain in a male patient: Endometriosis, Jabr & Mani 2014.

Endometriosis from thelarche to midteens: pathogenesis and prognosis, prevention and pedagogy, Batt & Mitwally 2003

Endometriosis in adolescents is a hidden, progressive and severe disease that deserves attention, not just compassion, Brosens et al., 2013

Endometriosis: advances and controversies in classification, pathogenesis, diagnosis, and treatment, Rolla 2019

Was Sampson wrong? Redwine 2013 [Endopaedia]

High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis, Sinaii et al., 2002

The co-occurrence of endometriosis with multiple sclerosis, systemic lupus erythematosus and Sjögren syndrome, Nielsen et al., 2011

Increased risk of inflammatory bowel disease in women with endometriosis: a nationwide Danish cohort study, Jess et al., 2012

A pilot feasibility multicenter study of patients after excision of endometriosis. Yeung P Jr, Tu F, Bajzak K, Lamvu G, Guzovsky O, Agnelli R, Peavey M, Winer W, Albee R, Sinervo K.JSLS. 2013

Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary? Yeung P Jr, Sinervo K, Winer W, Albee RB Jr. 2011

Regarding Surgical Management of Superficial Peritoneal Adolescent Endometriosis by Laufer and Einarsson. Yeung P Jr, Sinervo K, Orbuch I. 2020

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