Once and for all: What is Endometriosis?

Short. Simple. Factual. Bulletpointed.

Endometriosis is a chronic inflammatory whole body disease. It is defined by the presence of endometrium-like tissue in places outside of the uterus.

• The endometriosis tissue is not the same as the endometrium; it grew and developed outside of the uterus
• You are born with endometriosis, you can’t “catch” or “develop” it
• The intensity of the symptoms experienced as well as the age at which they start to show is individual and varies from person to person
• People with endometriosis have at least one other accompanying condition (comorbidity)

“Uterus on Endo”, Alekszandra Rokvity

Endometriosis Symptoms

Menstrual endometriosis symptoms:

• Debilitatingly painful menstrual cramping
• Abnormally heavy menstrual bleeding
• Pelvic pain
• Lower back pain
• Leg pain
• Fatigue
• Fever close to or during menstruation
• Cold-like symptoms close to or during menstruation
• Painful ovulation
• Vomiting, diarrhea, or constipation during menstruation

Non-Menstrual endometriosis symptoms:

• Chronic fatigue
• Migraines
• Painful urination
• Rectal bleeding
• Nerve pain in legs
• Painful and irregular bowel movements
• Infertility
• Cyclical cough
• Cyclical chest pain
• Shoulder tip pain
• Cyclical scar swelling and pain

Accompanying conditions:

• Multiple food intolerances
• Being prone to allergies
• Asthma
• Gastrointestinal diseases
• Irritable bowl syndrome
• Psoriasis
• Rheumatoid arthritis
• Cardiovascular diseases
• Appendicitis
• Thyroid cancer
• Ovarian cancer
• Breast cancer
• Neuropathy
• Depression and anxiety (unclear if symptoms or comorbidities)

How Does Endometriosis Work?

Most common locations of endometriosis lesions:

• Outer side of uterine walls
• Ovaries
• Fallopian tubes
• Colon
• Bowels
• Bladder
• Pelvic cavity
• Lungs

Origins of Endometriosis:

• HOX gene’s failure in body design (widely excepted theory, although there are others)
• Development of endometriosis is estimated to happen on the 15th day after conception
• Found in biological females, males, adolescents, children, fetuses
• Estrogen prompts the growth of endometriosis lesions (the estrogen naturally created in our bodies, the estrogen the endometriosis lesions make themselves, the estrogen we ingest, the estrogen we take as part of hormonal therapy and treatments)
• Symptoms start showing when the endometriosis lesions have been exposed to high amounts of estrogen (by natural production or chemical intake)

What happens in the body when you have endometriosis?

• The endometrium-like tissue which is located outside of the uterus behaves the same way as the endometrium — it synthesizes estrogen and prostaglandin, thickens, and attempts to shed during menstruation
• The body starts overproducing prostaglandin — (a lipid with “hormonal function”)
• Prostaglandin normally causes inflammation in order to fight infection, but during the menstruation the endometrium produces prostaglandin to help cause constriction which will push out the unused endometrium (make menstruating possible)
• Endometriosis lesions produce their own prostaglandin in an attempt to shed, causing high levels of systemic inflammation
• The pain which accompanies endometriosis usually starts after ovulation and is connected to the overproduction of prostaglandin.

Cure:

• There is no cure.

Difficulty in Diagnosis:

• Takes an average of 6 to 8 years between the first complaint to a doctor to reaching a diagnosis (in the Western world)
• There is no technology able to scan for endometriosis or detect it non-invasively; only an exploratory laparoscopic surgery can confirm the details of the illness with certainty
• There have been advances in imaging which enable trained specialists using state-of-the-art imaging devices to diagnose endometriosis with a significant degree of certainty
• Prejudice: there is assumption amid clinicians that patients complaining of severe menstrual pain are exaggerating, lying, have psychosomatic reactions or mental health problems
• Social taboo surrounding menstruation prevents open communication
• Lack of endometriosis in education — both in the medical and the public sphere
• Lack of endometriosis research
• Poor practice — patient dismissal

Treatment options:

• Laparoscopic surgery to remove chunks of tissue from critical places (pressing on nerves, making organs stick together and hindering their ability to function)
• Success rate of laparoscopic surgery is 52% — this includes the cases when the endometrium- like tissue grows back after approximately 2 years, in which case surgery is repeated

Pain management options:

• Regular exercise of pelvic area and stomach muscles
• Stretching
• Anti-inflammatory diet
• NSAIDs
• Hot and cold compresses
• Traditional Chinese Medicine methods
• Hormonal therapy (use to be standard treatment, but there has been significant attention to the drawbacks of this type of treatment in clinical literature of the last couple of years)

Sources:

“APPG on Endometriosis Inquiry Report 2020. Endometriosis in the UK: Time For Change (October 2020).” Patient Safety Learning — the Hub, 19 Oct. 2020, https://www.pslhub.org/learn/patient-safety-in-health-and-care/womens-health/appg-on-endometriosis-inquiry-report-2020-endometriosis-in-the-uk-time-for-change-october-2020-r3279/.

ESHRE, Endometriosis Guideline 2022, https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline.aspx

NICE Guideline. “Overview: Endometriosis: Diagnosis and Management: Guidance.” NICE, https://www.nice.org.uk/guidance/NG73.