What is Endometriosis?
Endometriosis is a systemic condition where tissue that is similar (not identical) to the lining of the uterus, can be found throughout the body. The tissue creates inflammation that forms lesions and growths that can cause chronic pain, organ damage, infertility and can have a significant impact on quality of life.
1 in 10 individuals, 1 million Canadians and approximately 200 million people worldwide have endometriosis, yet it’s one of the least researched medical conditions.
We also know that studies have proven that endometriosis has been found in fetuses and 16 cis males.
In a 2021 CBC News story, it states that in the past 20 years, only $7 million has been spent on endometriosis research in Canada. Diabetes, another chronic disease, received 150 times more in public money.
It is NOT ONLY a reproductive disease, it is a whole-body disease, as endometriosis can appear on other organs and muscle. It was once noted that endometriosis was identified on every organ and muscle except the spleen but in 2020, a case in France identified the first description of splenic endometriosis.
Based on what the doctor see’s during the laparoscopy, the endometriosis can sometimes be categorized by four different stages.
The specific stage criteria include:
- The extent of the spread of the endometriosis tissue (location, amount, depth and size)
- The involvement of pelvic structures, organs and tissues in the disease
- The extent of pelvic adhesions
- The blockage of the fallopian tubes
Stage 1: Minimal
Stage 2: Mild
Stage 3: Moderate
Stage 4: Severe
IMPORTANT TO NOTE: Disease stage DOES NOT equal pain. Staging for endometriosis was initially created to determine fertility, not pain levels and quality of life. To be honest, while I was in many endometriosis facebook support groups, I’ve only seen that using stages to describe the extent of the condition, can have a negative effect. By saying you have more disease based on stage, and suggesting to it being more painful is invalidating and makes others doubt their pain.
Endometriosis does not have a cure but there is symptom management for the condition.
Symptoms of Endometriosis
- Pelvic pain, especially excessive menstrual cramps that may be felt in the abdomen or lower back, that radiates down legs
- Abnormal menstrual flow
- Pain during intercourse
- Painful urination
- Painful bowel movements
- Other gastrointestinal problems, such as diarrhea, constipation, vomiting and/or nausea
- Stabbing pains up and under ribs
- Deep ache in neck, shoulders, upper arm or in the clavicle
- Trouble breathing around time of menstruation
- Stabbing and shooting nerve pain in neck, jaw and shoulders
- Possible infertility
- Chronic fatigue
Please note: The amount of pain experienced is not necessarily related to the severity of the disease. Some with severe endometriosis may experience no pain, while others with a milder form of the disease may have severe pain or other symptoms.
Learn more about why that is, here.
These symptoms can have a big impact on general physical, mental, and social well-being.
Why is an accurate endometriosis definition important?
By not sharing up to date, accurate information and research on endometriosis, we are creating more misinformation for patients to sift through, which then leads to a continued unnecessary delay in treatment and healing.
Many OBGYN’s still believe that endometriosis tissue is the lining of the uterus.
By saying endometriosis is the lining of the uterus, this implies that it is caused by menstruation; which leads to the conclusion for many Ob-Gyn’s: if you stop the period, you stop endometriosis.
This is not accurate.
We know that pregnancy, hormones, birth control or a hysterectomy cannot cure endometriosis.
We also know that studies have proven that endometriosis has been found in fetuses and 16 cis males. This disproves the retrograde menstruation theory being a potential cause of endometriosis, which I will explain below.
Causes of Endometriosis
There is no recent progress in truly understanding the cause of endometriosis. However, several theories have been suggested, including:
retrograde menstruation – when some of the uterine lining flows up through the fallopian tubes and embeds itself on the organs in the pelvis, rather than leaving the body as a period
- genetics – Dr. Redwine believes that there may be several genes that may be important in Endometriosis’ cause
- issues with the immune system, the body’s natural defence against illness and infection
- cells spreading throughout the body in the bloodstream or lymphatic system, a series of tubes and glands that form part of the immune system
Nonetheless, none of these theories fully explain why endometriosis happens. It’s highly likely the condition is caused by a combination of factors. This is why more research needs to be done!
How do you diagnosis Endometriosis?
It takes endometriosis patients an average of 6 to 10 years to receive a diagnosis. Endometriosis symptoms are vastly dismissed as ‘period problems’ and doctor’s may not take the time to investigate further and this contributes to the delay in diagnosis and timely management of endometriosis.
Imaging techniques may be used by your doctor such as MRI and ultrasound. They can have the ability to identify specific forms of cysts and/or deep infiltrating endometriosis (DIE). Imaging can also have an important role in planning for surgery with your specialist. However, imaging technology and the skill of the radiologist varies unless seen by a skilled endometriosis specialist.
Due to this, a negative result in a scan does NOT mean you don’t have endometriosis.
Currently the way to confirm a diagnosis of endometriosis is by undergoing a laparoscopic surgery with confirmed endometriosis pathology findings. Laparoscopic surgery is where a small camera is inserted into the pelvic cavity so the doctor can look for signs of endometriosis lesions, cysts and growths.
In a perfect world, if endometriosis is seen during surgery, the tissue should be surgically excised/removed by an experienced surgeon and sent to pathology to confirm a diagnosis.
Unfortunately, patients have a lot of trouble getting to the point where they can see a Gynaecologist experienced in the management of endometriosis to conduct such a surgery.
Many unspecialized Ob-Gyn’s will perform endometriosis ablation, which then can lead to more pain due to scare tissue and not removing the diseased tissue completely. More on that below.
Currently, there is no cure for endometriosis but management can be given to:
- relieve pain
- slow the growth of endometriosis tissue
- improve fertility
Together, with your medical team, you should:
Go over medical history
Your healthcare team should take a look at your medical history, including your symptoms, triggers, surgeries, pregnancies, falls or accidents, etc. They will need to know if you have other chronic pain conditions such as: IBS, Fibromyalgia, IC/BPS, etc.
Complete a Pelvic Floor muscle examination
The pelvic floor muscles should be assessed (by a pelvic floor educated practitioner, find one here) to look for tenderness and/or painful trigger points. If there are trigger points present, a referral to Pelvic Floor Physical Therapy is necessary.
*The pelvic floor supports the uterus, rectum, bladder and urethra. Pelvic pain and endometriosis are deeply intertwined with pelvic floor dysfunction. Having tight, hypertonic muscles can sometimes be a cause to many endometriosis symptoms, like pain, irritation and urinary problems.*
Education, medication, behavioural modifications and stress management:
- Diet modification
- Hot + Cold therapy
- Chronic pain education
- OTC Supplements
If you are looking for a condensed list of helpful resources and up to 60% off discounted pelvic pain products and services check out The Ultimate Pelvic Pain Resource Guide.
Endometriosis excision by a skilled surgeon and team is the gold standard management for endometrosis.
Surgical removal: Excision Vs. Ablation
The two most common surgical treatments for endometriosis removal are excision and ablation, but one is a far better treatment to the other.
Surgical ablation for endometriosis is a limited treatment that involves burning the lesions to try to remove them. The issue with this surgical technique is it only burns the surface of the lesion. Endometriosis lesions can implant deep, meaning if only the top of the lesion is being burned, the roots remain. Failing to remove those roots make the chances of recurrence much more likely.
Experts agree, surgical excision for endometriosis is the gold standard of a multidisciplinary approach to treating the disease. Excision involves cutting out any visible endometriosis lesions laparoscopically through small incisions in the abdomen.
With excision, unlike ablation, surgeons are able to excise the entire endometriosis lesion (including the root) while avoiding any damage to tissue and organs. Research shows excision is much more likely to result in long-term relief.
This is especially important for instances of deeply infiltrated endometriosis (D.I.E) because excision is the only way to completely remove lesions that are deeply embedded.
Given the difficulty and advanced surgical skills needed, excision should only be performed by endometriosis excision specialists – Find vetted Endometriosis surgeons who do excision surgery here.
Medication options for symptom management:
- Over the counter pain relievers
Hormone therapy: to prevent ovulation and reduce menstrual flow
- Birth control pills
- Hormonal or copper IUD
Progestin: lowers estrogen levels prior to follicular state, but not dropping levels completely like GNRH medications
GNRH Agonist (Gonadotropin-releasing hormone agonists): shuts down the ovarian function to reduce or eliminate the overall estrogen production within the body (it puts your body into a chemically induced state of menopause. )
- Lupron: Leuprolide, also known as Eligard, Lupron Depot, and Viadur
- Orilissa: Elagolix
- Tranexamic acid: nonhormonal option that reduces menstrual blood loss and improves quality of life in patients with heavy menstrual bleeding
- Traditional Chinese medicine
- Nutritional approaches
- Allergy management
- Immune therapy
Endometriosis symptoms range widely from patient to patient and it takes a wholistic, biopsychosocial approach to try to improve your symptoms and quality of life.
The Biopsychosocial approach suggests that our biology, thoughts, emotions, behaviours and social/cultural factors play an important role in healing overall human function when someone is living with chronic pain or illness. Using this approach in addressing and managing endometriosis symptoms shows promise in the treatment and management of the condition.
Unfortunately, no one medication or therapy will completely cure or eliminate your endometriosis pain and symptoms. You and your medical team should look at your case holistically and produce a customized treatment plan.
Forming your endometriosis healthcare team
Your healthcare team can consist of many medical doctors in various specialties such as Gynaecology, Urology, and Pain Management. But it can also consist of a variety of other practitioners such as:
- Physical Therapists
You’ll likely want to research practitioners by going on online forums and communities and searching for the top endometriosis excision specialists in your area.
Then use Google, join Facebook groups, read peer-reviewed scientific studies, read the blogs of practitioners and others who may be experiencing the same symptoms as you.
Knowledge is power.
Now, once you have narrowed down your list, you can start by finding the one doctor who understands your conditions and pain most (the one you will see the most – does NOT have to be your “primary care physician”) and build your team starting there.
This is because like-minded doctors tend to network and know other like-minded doctors and practitioners. Their referrals can (sometimes) streamline your healthcare dream-team, saving you time and money.
Once you start working with a doctor you like and trust, they will be able to give you better guidance as to what other practitioners you may benefit from on your healing journey while living with endometriosis.
Donnellan, N. M., I. R. Fulcher, and N. B. Rindos. 2018. “Self-Reported Pain and Quality of Life Following Laparoscopic Excision of Endometriosis as Measured Using the Endometriosis Health Profle-30: A 5 Year Follow-Up Study.” Journal of Minimally Invasive Gynecology 25 (7): S54.do.
Giudice LC. Endometriosis. New England Journal of Medicine. 2010 Jun 24;362(25):2389-98. : http://profmx.ferring.com.mx/wp-content/uploads/2018/05/clinical-practice-endometriosis.pdf
Landry, J. (2021, February 15). Endometriosis is Lacking Research in Canada. CBC News. https://www.cbc.ca/news/canada/british-columbia/endometriosis-lacking-research-1.5910342
Leyland, MD, N., Casper, MD, R., Laberge, MD, P., & Singh, MD, S. (2010). Endometriosis: Diagnosis and Management. Journal of Obstetrics and Gynaecology Canada, 244, S1. https://www.jogc.com/article/S1701-2163(16)34589-3/pdf
Redwine, M.D., D. (2003, March 3). The best-fit model for endometriosis. Fertility and Sterility. https://www.fertstert.org/article/S0015-0282(03)00590-9/pdf
Singh, S., M. Soliman, A., Rahal, Y., Defoy, I., Nisbet, P., & Leyland, N. (2020). Prevalence, Symptomatic Burden, and Diagnosis of Endometriosis in Canada: Cross-Sectional Survey of 30 000 Women. Journal of Obstetrics and Gynaecology Canada, 42(7), 829–838. https://www.jogc.com/article/S1701-2163(19)30980-6/fulltext#%20
Soo Hyun Ahn, Stephany P. Monsanto, Caragh Miller, Sukhbir S. Singh, Richard Thomas, Chandrakant Tayade, “Pathophysiology and Immune Dysfunction in Endometriosis”, BioMed Research International, vol. 2015, Article ID 795976, 12 pages, 2015. https://doi.org/10.1155/2015/795976https://www.hindawi.com/journals/bmri/2015/795976/
The World Endometriosis Society (WES). (n.d.). The World Endometriosis Society (WES). Retrieved November 23, 2020, from https://endometriosis.ca/endometriosis/
Understanding Endometriosis on MedicineNet.com. (2003, October 23). MedicineNet. https://www.medicinenet.com/script/main/art.asp?articlekey=54511
Weyl, A., Illac, C., Delchier, M.-C., Suc, B., Cuellar, E., & Chantalat, E. (2020). Splenic lesion mimicking breast metastasis: The first description of splenic parenchymal endometriosis. Journal of Endometriosis and Pelvic Pain Disorders, 13(1), 69–73. https://journals.sagepub.com/doi/abs/10.1177/2284026520960846?journalCode=peva
Yeung P Jr. The laparoscopic management of endometriosis in patients with pelvic pain. Obstet Gynecol Clin North Am. 2014 Sep;41(3):371-83.
Young SW, Groszmann Y, Dahiya N, Caserta M, Yi J, Wasson M, Patel MD. Sonographer-acquired ultrasound protocol for deep endometriosis. Abdom Radiol (NY). 2020 Jun;45(6):1659-1669. doi: 10.1007/s00261-019-02341-4. PMID: 31820046.