What is Endometriosis?
"en-dow-mee-tree-ow-sis"
Chronic, Systemic, Inflammatory Disease
Endometriosis is a chronic, systemic, inflammatory disease. It occurs when tissue similar, but not the same, as the lining of the uterus is found in other areas of the body. The disease can result in the formation of lesions, adhesions, organ dysfunction & more. It is most commonly found in and on the cul-de-sac, ovaries, fallopian tubes, appendix, bowels, bladder and thoracic area. Endometriosis can affect every major organ system and bodily function. It can cause intense, severe & often debilitating pain at any time, including menstrual cycles for some people. Endometriosis affects 1 in 10 individuals AFAB but it has been found across all genders. There is no known cause or cure for endometriosis.
1 in 10 have Endometriosis
Symptoms
- Heavy periods
- Excessive period pain
- Abnormal pelvic pain
- Painful with sex
- Pain, frequency or burning with urination
- Bloating, nausea, diarrhea, constipation or pain with bowel movements
- Stabbing pains up and under ribs
- Pain with exercise or activities
- Fatigue Symptoms that increase randomly or with periods
- formation of endometriomas, fibroids and/or adhesions
- other co-morbidities such as autoimmune conditions, digestive conditions and dysautonomia conditions
Disease Location
Endometriosis can be found in and across all these areas of the body (listed from most to least common):
- Pelvis (cul-de-sac, peritoneum, bladder, bowels, intestines, ovaries and fallopian tubes)
- Gastrointestinal tract and urinary tract
- Diaphragm and lungs
- And rarely the pulmonary system, extremities, skin, central nervous system, spleen, brain, soleus/gastrocnemius muscles, adrenal glands, nose and more.
A major misconception is that a hysterectomy (removal of the uterus) is a cure or treatment for endometriosis. By very definition, endometriosis is located outside the uterus, so removing the uterus does not cure, treat or improve ongoing endometriosis symptoms.
Diagnosis
Treatment
Endometriosis can only be diagnosed with a biopsy taken during surgery. There is a delay to diagnosis because:
- Although the condition is common, the medical profession still knows very little about it.
- Referrals to a specialist and in-turn surgery take a long time to access, especially in rural communities.
- Excessive period, stomach, or pelvic discomfort is not taken seriously.
- Endometriosis affects all the organs in the body, causing a range of symptoms that are often misdiagnosed.
The gold standard treatment for endometriosis is excision surgery performed by a qualified and experienced specialist. Using this technique, a specialist will remove all endometriosis lesions by its root. Other forms of supports for symptoms include:
- Specialised gynaecological support
- Pelvic physiotherapy and related treatments
- Acupuncture, Naturopathic support, and other “holistic” modalities
- Pain killers and other medications (as prescribed by a doctor)
- Hormonal treatments (as prescribed by a doctor and only for a short period of time)
- Diet & nutrition modifications
- Identification & management of additional conditions that could be contributing to symptoms
Common Myths
Endometriosis is rare & uncommon
The disease affects over 500,000 people across Canada, 10% of the population AFAB, and unrecorded numbers of people across all genders and races.
Period pain is normal
Subtle discomfort during a period can be normal, but severe pain that interferes with a person’s life or disrupts them from completing daily activities is not normal.
Endometriosis is just an STI
The disease is not an STI, it is not something someone can “catch”. Endo has no definitive cause, but we know that genetics, diet and exposure to certain environmental toxins may play a role.
Endometriosis is a uterine disease
By definition, endometriosis is a systemic disease that occurs outside the uterus. It is not caused by retorgrade menstruation, or found within the uterus.
Teenagers can't have endometriosis
Most people with endometriosis begin reporting symptoms around the time of their first period cycle. 70% of teens with pelvic pain go on to be diagnosed with the disease.
Pregnancy can cure endometriosis
Pregnancy does not cure endometriosis, the disease can not simply go away or stop due to pregnancy.
I am a person with endometriosis
We know first hand how overwhelming, disheartening and confusing it can be to find a diagnosis and navigate treatment options for endometriosis. Thats why we are here; we want to empower you to feel equipped to speak with a health professional and organize the care you deserve. Follow the map below, created by patients for patients.
Educate Yourself About Endo
From our experience, gaining knowledge about endometriosis is imperative to ensure you understand what is going on in your body and all your options for treatment and care. We believe that education is the most powerful tool for empowering patients to advocate for the best possible outcomes.
Education is not only important for you, the patient, but also for your support system and medical team. There is a lot of misinformation out there, so its imperative those helping you fully understand your disease.
You can find educational resources throughout our website and social media platforms. Stay tuned as we continue to grow our website to better serve you!
Track Your Symptoms
It can be helpful to track the symptoms you are experiencing. By tracking your symptoms you are providing evidence and information for your medical professional(s) to better understand how your symptoms are affecting you on a daily basis and how they can help.
Example Daily Tracking
- date & time
- pain level (1-10)
- location of pain
- quality of pain (achey, stabbing, throbbing etc)
- trigger
Symptom tracking is most effective over a span of weeks or months, esspecially when you menstruate. Some people also like to recormedications, water intake, food intake and exercise.
Speak to a Medical Professional
Discuss your concerns of endometriosis with a trusted medical professional (doctor, nurse practitioner, gynaeologist etc.) and request they work with you to further investigate your symptoms and the possibility of endometriosis. Make sure to bring any supporting documentation with you, such as your symptom tracking, a fact sheet or symptom checklist.
Discuss your concerns of endometriosis with a trusted medical professional (doctor, nurse practitioner, gynaeologist etc.) and request they work with you to further investigate your symptoms and the possibility of endometriosis. Make sure to bring any supporting documentation with you, such as your symptom tracking, a fact sheet or symptom checklist.
Remember referrals to a specialist and in-turn surgery take a long time to access, especially in rural communities. It’s best to get your referral in as soon as possible.
The gold-standard treatment for endometriosis involves a multi-disciplinary approach. This will look different for each individual person based on medical history, current condition, accessibility to treatments and medical professionals, finances and more. Its important you fully understand the benefits and risks to whatever choices you make. Upholding informed consent throughout your medical journey is vital!
Examples of Multi-Disciplinary Treatment
- Specialised gynaecological support
- Pelvic physiotherapy and related treatments
- Acupuncture, Naturopathic support, and other “holistic” modalities
- Pain killers and other medications (as prescribed by a doctor)
- Hormonal treatments (as prescribed by a doctor and only for a short period of time)
- Diet & nutrition modifications
- Identification & management of additional conditions that could be contributing to symptoms
Organize Multi- Disciplinary Treatment
Create a Support Network & Adjust Your Lifestyle
Going through the process of receiving a possible diagnosis and/or living with endometriosis can be very difficult. It can be helpful to create a strong support network to help you. This may include 1-3+ people who are informed about endometriosis, your symptoms, and what you need in a moment of crisis, or on a daily basis. It can also help to adjust your lifestyle by informing people close to you about your limitations and ways certain aspects of your life could become more accessible.
“Asks” for Support
- driving to medical appts
- advocating during crisis
- picking up medication
- making a meal
- walking the dog
- professional accomodations*
Remember you are not alone! There are many amazing support networks out there to help support you during times of need. If you or someone you love are in a crisis dial 911.
*Many workplaces and educational institutes are able to offer certain accomodations for people who deal with chronic pain and disabilities and have supportive medical documentation. Accomodations might include, ergonomic chair, ergonomic desk, ability to leave classroom/workplace due to pain and ability to bring supports such as heat packs or lumbar support cushion to school/office.
Follow us On Social Media to Learn More
@endometriosiscanada
@EndoOrgCanada
References
Crisis Resources
For mental or physical emergencies call 911
For Chronic Pain Support Resources across Canada https://www.canada.ca/en/public-health/services/diseases/chronic-pain/chronic-pain-resources.html
(BC Residents) Chronic Pain Support Line 1-844-880-PAIN
- The Pain Support Line offers free information, emotional support and resource assistance to empower people living with pain and their loved ones to improve well-being and advocate for themselves.
- https://painbc.ca/find-help/pain-support-line
(BC Residents) Mental Health Crisis Line call 1-800-784-2433 or dial 9-8-8 if you are experiencing feelings of distress or despair, including thoughts of suicide
BC Suicide or Mental Health Crisis Line: 1-800-784-2433 or dial 9-8-8
- if you or someone you know is experiencing feelings of distress or despair, including thoughts of suicide
BC Mental Health Support Line: 310-6789 (No area code required).
- Emotional support and resources for mental health & substance misuse.
Crisis Services Canada:1-833-456-4566 (A 24/7 hotline for anyone thinking about or affected by suicide) or text: 45645 (available 4 pm-midnight ET. Standard text messaging rates apply).
Here2Talk: 1-877-857-3397 (24-hour support for BC postsecondary students).
Seniors’ Distress Line: 604-872-1234 (24-hour support for seniors and people who are concerned about an older adult).
Talk Suicide Canada: 1-833-456-4566 (24 hours, toll free), or text: 45645 (available 4 pm-midnight ET, standard text messaging rates apply)
- 24 hour support line for anyone thinking of or affected by suicide.
Indigenous Crisis Resources
KUU-US Crisis Line:1-800-588-8717 (A 24-hour crisis line for Indigenous people).
Adults/Elders line: 250-723-4050
Youth line: 250-723-2040
Hope for Wellness Help Line:1-855-242-3310
- Offers mental health counselling and crisis intervention to Indigenous people across Canada.
Indian Residential School Crisis Line:1-866-925-4419
- A national service for anyone experiencing pain or distress as a result of their residential school experience.
InKamatsiaqtut Help Line:867-979-3333 or 1-800-265-3333
- Inuk Mental Health Support line
Métis Crisis Line:1-833-638-4722 (1-833-MétisBC)
- Métis Nation BC with Kuu-Us Society line is available for immediate crisis intervention, and a variety of other issues like relationship troubles, depression and anxiety, financial issues, bullying, and peer pressure support.
2SLGBTQIA2++ Crisis Resources
Youthline: (phone) 1-800-268-9688 (text) 647-694-4275– chat option is also available online
The Trevor Project:1-866-488-7386
Trans Lifeline: Canada 87733-6366
LGBT National Help Center: 888-843-4564
Sex Gender & Relationships Hotline: 415-989-7374