WHAT IS ENDOMETRIOSIS?

What even is Endometriosis? 

• The term ‘Endometriosis’ comes from the Ancient Greek, meaning an abnormal condition of the uterus. 

"Endometriosis is a systematic inflammatory disease characterised by the presence of endometrial-like tissue found in extrauterine sites"  ( Kennedy S. et al., 2005; Klemmt et al., 2018; Saunders et al., 2021).

• Endometriosis It is not the endometrium cells/tissue which is often what it is incorrectly described as. The Endometriosis lesions and the lesions of the Endometrium have pathological differences. Although similar, they are not the same which is why the definition of Endometriosis is so important. 

• Although classified as, Endometriosis is not a menstrual or uterine disease. It is a full body disease which has been found present on every organ within the body, including the brain.

What Causes Endometriosis?

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

• There is no current sole known cause of Endometriosis. Many experts and scientific studies over the years have suggested that it could possibly have multiple different causes such as genetics, immune dysfunction, environmental factors such as toxins etc. The most common and widely accepted cause is Retrograde Menstruation (Sampson's theory) However, this has been debunked multiple times scientifically and it leaves a lot of questions unanswered. If you are looking to learn more on the Retrograde Menstruation theory please see my blog post about it. It is also suggested that Endometriosis does not act and respond to hormones the same way as the Uterine lining. Endometriosis lesions have their own hormone receptors and they create their own estrogen which can inflame at any point during the menstrual cycle.

 What is the cure?

• There is currently no cure for Endometriosis.
• Endometriosis-related pain has conventionally been treated with endocrine agents such as synthetic progestins, oral contraceptives, or gonadotropin-releasing hormone analogs. Also known as Mirena coil, The Pill, Lupron, Orlissa etc. It is important to know that these can possibly suppress your symptoms, they are unable to stop the growth of Endometriosis and they are not successful for everyone. 
• 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, below I have listed some of the more common symptoms. 

• Painful & Irregular periods
• Digestive Issues
•  Pain in lower abdomen
• Heavy Menstrual bleeding or bleeding between periods.
• Fatigue
• Cramping
• Infertility or difficulties to conceive
• Pain during or following Sexual Intercourse
• Painful Bowel Movements
• Lower back pain
• Painful Urination
• Bloating 
• Nausea
• Constipation 
• Diarrhoea
• Leg Pain 

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 - (Thoracic Endometriosis). 

“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 deeply infiltrated the Endometriosis lesions are and if a specialist is reading the images  Endometriosis can be detected from MRI Scan. However, this is not always the case. 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 and sometimes the Endometriosis lesions are not always detectable through imaging. Endometriosis was not detectable on any of my tests before my surgery. 

• 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 for pathological testing to confirm the presence of Endometriosis.
• A Laparoscopy can also offer the opportunity to provide information about the extent and the location of Endometriosis, depending on who is performing the surgery. 

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 removal techniques performed. Ablation and Excision, it is super important to understand the difference and ask your surgeon which one they perform. Please see the Free Download (on the Free Downloads page) explaining the difference between the two. 
• I also have a Free Packing List Download available too so get that one downloaded! It's all about what to expect and what to pack for your Surgery. 

•  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 (who only operates in Endometriosis and nothing else) and I would have asked so many questions.

I tend to avoid using the Uterus image as a representation of Endometriosis as it is not a menstrual disease however, this was my first image specifically drawn for this website when it first launched 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.net/clinical/excision-ablation/

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

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