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WHAT IS ENDOMETRIOSIS?
All information provided is used with permission from
The Center for Endometriosis Care
. All rights reserved. ©
THANK YOU!
Endometriosis (en-doe-me-tree-O-sis)
Despite being among the most common of diseases, persistent myths, misinformation and deficient health literacy continue to enshroud the disease – even by the most well-intentioned sources – often resulting in poor information systems and continued lack of effective care.
Endometriosis is much more than simple, so-called “killer cramps,” as it is often mistakenly labeled, with symptoms routinely occurring apart from menses at any time of the cycle and, in many instances, becoming chronic in nature. It is important to understand that minor cramping during menstruation is not uncommon for many individuals, particularly adolescents. Inflammatory hormones like prostaglandins (along with others) are linked to menstrual discomfort; this mild pain is not typically cause for alarm and may be remedied through a variety of measures. Usually, such pain is temporary and subsides after menses. This is called “dysmenorrhea.” Dysmenorrhea is NOT the same as endometriosis.
Endometriosis is much more than simple, so-called “killer cramps,” as it is often mistakenly labeled, with symptoms routinely occurring apart from menses at any time of the cycle and, in many instances, becoming chronic in nature. It is important to understand that minor cramping during menstruation is not uncommon for many individuals, particularly adolescents. Inflammatory hormones like prostaglandins (along with others) are linked to menstrual discomfort; this mild pain is not typically cause for alarm and may be remedied through a variety of measures. Usually, such pain is temporary and subsides after menses. This is called “dysmenorrhea.” Dysmenorrhea is NOT the same as endometriosis.
Endometriosis is not just ‘painful periods’ nor is it simply ‘bits of normal endometrium implanted in abnormal places, caused by backflow menstruation’ as many articles, the media, endometriosis foundations, spokespersons and even some scientists continue to incorrectly describe. Endometrium – the lining of the womb which breaks down and is shed during menstruation – is histologically different from the functional glands and stroma that comprise endometriosis. Contrary to popular public doctrine, while the tissue does somewhat resemble – it is not the same as – ‘normal’ endometrium.
Characterized as the presence of endometrial-like tissue found in extrauterine sites – an important distinction! – the aberrant processes involved in endometriosis give rise to pain, inflammation, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), organ dysfunction and more. Alterations in certain biological processes of the endocrine and immune systems have also been observed with the disease, and endometriosis is embodied by a complexity of multiple immunologic abnormalities, endocrine alterations and unusual expression of adhesion molecules.
Characterized as the presence of endometrial-like tissue found in extrauterine sites – an important distinction! – the aberrant processes involved in endometriosis give rise to pain, inflammation, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), organ dysfunction and more. Alterations in certain biological processes of the endocrine and immune systems have also been observed with the disease, and endometriosis is embodied by a complexity of multiple immunologic abnormalities, endocrine alterations and unusual expression of adhesion molecules.
Fortunately, effective treatments are available. Just not in Canada.
Let's change that!
ENDOMETRIOSIS FREQUENTLY ASKED QUESTIONS
WHAT ARE THE SYMPTOMS?
WHO GETS ENDOMETRIOSIS?
HOW IS IT DIAGNOSED?
* Crippling period pain in people who menstruate
* Abdominopelvic pain at any time, often intractable and chronic (6 months or longer of non-menstrual pelvic pain)
* Bowel or urinary disorders/pain/dysfunction
* Painful intercourse/penetration/sexual activity
*Pain with tampon insertion/inability to use tampons due to pain
* Infertility/pregnancy loss/possible link to preterm births
* Possible immune-related and other comorbid disorders
* Allergies, migraines or fatigue in some; may tend to worsen around menses
* Coughing up blood in cases of pleural/thoracic endometriosis
*Leg and lower back pain, particularly in cases of sciatic endometriosis
*The disease may also resemble some symptoms of, and has been linked to, adenomyosis
*Comorbid pain syndromes, mood conditions and asthma have been documented in some individuals with endometriosis.
* Abdominopelvic pain at any time, often intractable and chronic (6 months or longer of non-menstrual pelvic pain)
* Bowel or urinary disorders/pain/dysfunction
* Painful intercourse/penetration/sexual activity
*Pain with tampon insertion/inability to use tampons due to pain
* Infertility/pregnancy loss/possible link to preterm births
* Possible immune-related and other comorbid disorders
* Allergies, migraines or fatigue in some; may tend to worsen around menses
* Coughing up blood in cases of pleural/thoracic endometriosis
*Leg and lower back pain, particularly in cases of sciatic endometriosis
*The disease may also resemble some symptoms of, and has been linked to, adenomyosis
*Comorbid pain syndromes, mood conditions and asthma have been documented in some individuals with endometriosis.
Not all persons with endometriosis will have all symptoms or comorbidities, of course, and no two cases are identical.
Though endometriosis largely affects females of reproductive age, the disease can and does impact menstruators and non-menstruators alike – including rare cis males, post-hysterectomy/menopause and before a girl’s first period. It is also imperative to look beyond gendered health and include all persons, many of whom who are often struggling to access endometriosis diagnosis, treatment and supportive, quality care in a traditionally female-identified space.
Endometriosis has also been documented in the human fetus, and is extremely common in teens – though often dismissed, ignored and under-diagnosed due to stigma and lack of awareness. Without a doubt: endometriosis has a significant social and psychological impact on the diverse population affected – across several domains of their lives. The time for the disease to receive recognition as a major public health issue is long past due.
The only way to confirm a definitive diagnosis of endometriosis is still surgically; usually via the minimally invasive procedure known as Laparoscopy. Though symptoms and/or diagnostic testing (CT scans, MRIs, etc.) may give rise to “informed suspicion” and are helpful for presurgical planning, only surgery permits the requisite visual and histological (biopsy proven) diagnosis. Most importantly, Laparoscopy also facilitates actual treatment of the disease. It is inappropriate – and impossible – to diagnose endometriosis medically.
Early diagnosis and proper treatment are critical keys to living well in spite of the disease.
HOW IS IT TREATED?
WHAT IF IT ISN'T TREATED?
WHAT ABOUT MEDICATIONS?
Laparoscopy is the surgical approach (minimally invasive) – not a tool. The da Vinci robotic-assisted procedure is also an approach, not a method. It is important to understand that tool and method are not nearly as important as skill of the surgeon: if he or she cannot excise, they cannot excise using any method or tool. For example: laser can be used to safely and successfully perform laparoscopic resection (excision) of all disease, as we do – or it can be used to superficially and incompletely burn surface lesions, as most obgyns do. It’s imperative to determine which method your surgeon will be using and understand their disease knowledge, approach and expected outcome. Again: the tool is not as important as the skill of the surgeon who uses it, and most tools can be used to facilitate a number of surgical approaches.
Medical therapies like GnRH agonists/antagonists, oral contraceptives or other hormonal suppressives – but these only mask symptoms and do not treat disease long-term in any way. Patients are also sometimes misled to believe that the only long-term solution is removal of reproductive organs (hysterectomy/salpingo-oophorectomy) – a dangerous myth. Though hysterectomy has its place in endometriosis treatment for select cases, particularly where pain originates from the uterus, the disease is not “cured” by removal of the uterus, ovaries and/or tubes and cervix. This ongoing misconception is responsible for countless, needless hysterectomies performed each year – indeed, nearly half of the 400,000+ hysterectomies performed in the United States annually are the result of endometriosis. Similarly, “pregnancy” and/or “menopause” are often touted as curative, but such claims are
equally untrue.
The pain and symptoms may worsen or even become chronic over time as the lesions become deeper and more fibrotic. As a result, infertility, bladder or bowel dysfunction, painful sex and many other physical and quality of life issues can occur. Current research indicates there is a preponderance of inflammatory milieu and hyperinnervation involved in the pathophysiology of pain in those with the disease, and that patients with chronic pelvic pain routinely demonstrate increased pain sensitivity even in non-pelvic sites. Early data implies that where the lesion is located may correspond to infiltration and/or adhesion formation, though further research needs to be done in this area.
WHY DID I CHOOSE THE CENTER FOR ENDOMETRIOSIS CARE?
I spent endless hours researching every available option around the world.
After speaking with them all, I found the CEC. I requested a case review and after hearing their opinion, I realized that there were other options. I didn't have to accept my doctors ambivalence, and crazy treatment regimens any longer.
They took the time to listen, and most importantly reminded me that "IT ISN'T IN MY HEAD".
They gave me logical answers and solutions to my situation, beyond a lifetime of pills and clinical trials. I was finally heard. I didn't have to accept living like this. I could possibly live a life without pain, clinics and harmful medications.
I will be documenting my journey and posting it from time to time in the hopes that it will help someone else.
If you would like to know more about Endometriosis, please go to
centerforendo.com.
They have a vast content library that helped me understand my disease better, and gave me the courage to speak out and advocate for better care.