WHAT IS ENDOMETRIOSIS?

Picture of Female Uterus with Endometriosis growing.

What is Endometriosis?

Endometriosis is a Chronic lifelong disease defined as the endometrium- like- tissue growing outside the uterine cavity. It is not the Endometrium which is often what it is incorrectly described as.

Endometriosis is classed as the second most common gynecological condition, one of the most common causes of infertility and chronic pelvic pain and affects 1 in 10 people. However, it is an all over body disease which has been found on every organ in the body.. even the brain. Endometriosis advocates are hoping somewhere in the future this will be recognised as an all over body disease not just a menstrual one.

We are lead to believe that each month these cells react in the same way to those in the womb, building up then breaking down. And that the cells in the womb leave the body as a period but the other cells have nowhere to go which can cause inflammation, pain and formation of scar tissue. However, many scientific studies have stated that retrograde menstruation is not a cause of Endometriosis. These studies suggest that Endometriosis does not act and respond to hormones the same way as the Uterine lining. They also suggest that Endometriosis lesions have their own hormone receptors and they create their own estrogen which can inflame at any point during the menstrual cycle.

With very little funding and lack of education and knowledge there are still a lot of uncertainties surrounding Endometriosis, the cause being one of them.

What Causes Endometriosis & What is the cure?

Although, there has been scientific links to genetics and immune system there is currently no known cause for Endometriosis.
There is no cure. Hormone contraception, Lupron, Orlissa, eating fruit and veg, doing yoga, having a baby or a having a hysterectomy will NOT cure Endometriosis.

What are the Symptoms of Endometriosis?

The Symptoms of Endometriosis vary from person to person. Pelvic pain is the most common symptom. Below are some other common symptoms -

Painful & Irregular periods
Pain in lower abdomen before and during menstruation.
Heavy Menstrual bleeding or bleeding between periods.
Fatigue
Infertility or difficulties to conceive
Pain during or following Sexual Intercourse
Discomfort with bowel movements
Lower back pain that may occur at anytime or during your menstrual cycle
Bloating
Nausea

Where Can Endometriosis be found?

"The disease may present at an early age and typically develops on the pelvic structures including the rectovaginal cul de sac, peritoneum, bladder, bowels, intestines, ovaries and fallopian tubes. However, endometriosis is also often diagnosed in areas outside the reproductive organs i.e., diaphragm and lungs, where it can induce Catamenial Pneumothorax. “Pelvic endometriosis” is traditionally defined as lesions of the tubes, ovaries and local peritoneum; “extrapelvic disease” is wide-ranging and refers to that found elsewhere – including the spleen, gastrointestinal tract, urinary tract, pulmonary system, extremities, skin, central nervous system and beyond." - Extract from https://centerforendo.com/endometriosis-understanding-a-complex-diseas

How do you receive a diagnosis of Endometriosis?

On some occasions, depending how deep the Endometriosis is and if a specialist is reading the images Endometriosis can be detected from MRI Scan. However, this is not always the case, so do not be alarmed if it is not showing on any of your tests. Most general Obgyns are not trained to read imaging detecting Endometriosis.
A smear test can NOT detect Endometriosis.
Unfortunately the only definitive way to diagnose Endometriosis is through Laparoscopy surgery where biopsies can be taken and sent to a lab for further testing.
A Laparoscopy can provide information about the extent and the location of Endometriosis.

What is the Laparoscopy Surgery?

Laparoscopy is a surgical procedure which allows the surgeon to access inside the pelvis.
There are 2 kinds of Surgery. Ablation and Excision.
Ablation - Uses heat energy to burn and destroy the abnormal cells where Endometriosis lies. This is less invasive, so has a shorter recovery time but recurrence rate is higher.
Excision - Cutting the Endometriosis lesions at the root with the aim of not leaving any behind. This is more invasive so has a longer recovery time but the recurrence rate is lower.

If I could rewind knowing what I know now and should my doctor suggest that I had suspected Endometriosis or knew I had Endometriosis was looking at Surgery - I would come away and do my research. I would find myself a highly rated Endometriosis excision specialist, and asked so many questions. If I'd have known that I had Endometriosis before my Surgery I would have done things very differently.

Image by the very talented mega babe - @Trutherus

Sources -

Bulun, S. E., Monsavais, D., Pavone, M. E., Dyson, M., Xue, Q., Attar, E., Tokunaga, H., & Su, E. J. (2012). Role of Estrogen Receptor-B in Endometriosis. Seminars in Reproductive Medicine, 30(1), 39-45. https://doi.org/10.1055/s-0031-1299596

Guidone, H. C. (2020). The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation. In: Bobel, C., Winkler, I. T., Fahs, B., Hasson, K. A., Kissling, E. A., Roberts, T. A. (eds) The Palgrave Handbook of Critical Menstruation Studies. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-0614-7_22

https://www.healthline.com/health/endometriosis

Medically reviewed by Valinda Riggins Nwadike, MD, MPH — Written by Abdul Wadood Mohamed— Updated on July 2, 2019

https://www.nhs.uk/conditions/endometriosis/

https://endometriosis-uk.org/understanding-endometriosis

https://endometriosis.net/clinical/excision-ablation/

https://www.nhs.uk/conditions/laparoscopy/

https://www.sciencedirect.com/science/article/abs/pii/S1047279797000173?via%3Dihub