Blog #5 Endometriosis: stuck on a roundabout
If you’ve seen the movie National Lampoon’s European Vacation you may recall L’Arc de Triomphe roundabout (traffic circle) scene. If you haven’t seen or remember it, let me fill you in. The Griswold family departs America and arrives in Paris, France. The dad rents a car. They decide to drive the streets of Paris. Along the route, they enter the roundabout at L’Arc de Triomphe. Once they enter it, they can’t get off. They spend the rest of the night going around and around. They see the same sights over, and over, and over again.
When it comes to research and treatment for endometriosis, it’s the same thing. Those with authority and status to direct innovation and progress, all gathered in a Citreon, circling L’Arc de Triomphe. Over and over and over again. Their intentions appear good: to explore disease pathogenesis and expand treatment options, but are built on the same information that has been debunked. Driving on the same roads, previously tracked will not allow full exploration in a new city.
For the Griswolds, it’s a single night stuck on a roundabout. For the endometriosis community, passengers in the car, we’ve been stuck on that roundabout, driven by decision-makers, for DECADES. Passengers. Captives. At the mercy of the drivers. But why can’t we get off the roundabout? From where I sit, I have a few theories: they either don’t have the skills to exit the roundabout, understand the rules of the road and prioritize the needs of the most important stakeholders, or lack vision and ability to explore unfamiliar roads in a foreign land. We continue, around and around, no indication we’ll ever get off.
It’s maddening. Exposed to the same scenery over and over. In the world of endometriosis, that scenery is hormone suppression and ablation. Those committed to improve education, awareness and implement advanced skill set steeped from training beyond residency, are passengers and captives. We’re stuck in a system that continues to use the same methodologies for medical management ‘advances’, analysis of disease pathogenesis, descriptions of disease and care standards.
Methodology that is simply history repeating itself. Meanwhile, we, the passengers, are those with the disease, advocates and providers whose caseloads are nearly or all persons with endometriosis…we, and the generation before us, have not, and cannot, wait patiently for the drivers to finally exit the roundabout.
We may be passengers but we haven’t sat quietly. Those before us and today raise our voices in dissatisfaction for the quality of care, stagnation of innovation, concerns for the effects of current treatment standards and failure to acknowledge another surgical option to treat the disease. There have been petitions and protests. There have been requests to participate in development of policies and treatment standards for individuals with endometriosis. There have been requests to acknowledge body-wide disease and establish guidelines with multidisciplinary surgical as care standard.
Maybe those driving are too focused on disease of the reproductive system. They are, after all, obstetricians and gynecologists. However, the professional background of many drivers do not include significant degrees of endometriosis focused patient care, particularly complex disease that has invaded multiple body systems. We have drivers who haven’t endured the grand number of hours advancing their knowledge and surgical skills to methodically remove the disease from the body. Those drivers who do have interest in the disease are commended for their efforts in the laboratories. However, their limited number of hours in the operating room: treating multi-organ, multi-system complex endometriosis does not seem a comparable trade off to the hours spent in the laboratory where the conditions surrounding endometriosis lesions, or their components, are controlled. Many drivers continue to use Sampson’s Theory of Retrograde Menstruation as the backbone of their laboratory work. How much longer is endometriosis going to be stuck in the same lane? Are we ever going to get off this roundabout? Maybe the driver’s cant get off, but their passengers certainly can and are.
The passengers can no longer continue to wait. There is a change of direction that has been building. The thing is, its not the drivers who are steering. Its the passengers.
The digital age has bolstered passengers to build awareness and educate our community about all aspects and management of the disease. All aspects include extrapelvic disease.
Passengers are looking beyond the long-standing perception of endometriosis as a disease confined to the female reproductive system. Endometriosis can and does involve other body systems and organs. We are raising our voices. We are telling our stories. It’s time to stop labeling disease outside of the reproductive system as ‘rare’.
While the drivers continue to circle the roundabout with talks of hormone suppression, diagnosis without surgical confirmation and surgical ablation, passengers may be stuck in the car, but we’re on our laptops! We’re building and sharing knowledge, discussing and supporting each other.
Our numbers are growing. We meet in groups, search for and obtain validation from others with similar struggles. We flock to the few multidisciplinary surgical teams with the skills and knowledge to address disease throughout the body with excision. When we can get out of the car, we meet in person. We realize we are less frequent, but certainly not ‘rare’! Just because there is a lack of diagnoses for areas and frequencies of occurrence for many extrapelvic locations of disease, it does not equate to ‘rareness’. It equates to lack of acknowledgement and ignorance. Sad, but real, not all of us are able to travel and access surgery with a team of surgeons dedicated to excise endometriosis lesions body-wide (to include urinary, digestive, respiratory, cutaneous, peripheral nervous and muscular systems).
Where does this lead those with barriers to access surgical teams with excision skills? Back to the roundabout again; ablation and hormone suppression. A lack of innovation and ability to see beyond the roundabout leads drivers to more hormone suppression; despite evidence that every drug historically approved to ‘treat’ endometriosis have affected the same pathway (pituitary-gonads) and from the same drug classification. There is NO evidence the use of hormone suppression the shrinks endometriosis lesions or cures the disease.(1) Regardless of which hormone suppressant is used, “recurrence of endometriosis-associated pain after treatment cessation is common, even after the short follow-up times reported” was summarized from 29 studies.(1) The “mechanism of action of available treatments provide symptom relief only, and at the present there is no cure for the condition”.(2)
In addition, ablation (burning) of endometriosis lesions is <2 mm depth penetration, leaves eschar/surgical char/carbon deposits and active disease of deeper lesions.(3,4) Furthermore, lesions of non-reproductive organs (intestines, bladder, diaphragm etc) are often left untreated. This is where I make my case about the need to recognize that disease outside of the reproductive organs is not ‘rare’ and must not be left untreated. The fact is, imaging is not 100% sensitive or specific to detect endometriosis for all disease throughout the body. Furthermore, the ability to determine presence of deep and/or extrapelvic disease preoperatively can be a ‘gray area’. Hence, referral to a surgeon equipped with all the tools (advanced excision skills) reduces repetitive surgeries, healthcare costs, time off work and burden on the patient. Its vital to address ALL disease: superficial, deep pelvic and extrapelvic. Prepared with the appropriate skills is vital because “when endometriosis involves other organs, excision is the only surgical option”.(5)
Yet hormone suppression and ablation remain treatment standards, STILL! In addition, there is talk of changing the current diagnostic process for endometriosis. The current standard is direct observation and surgical biopsy confirmed histology. Despite inconsistent efficacy, there is talk about the use of hormone manipulation to diagnose endometriosis. I am gobsmacked at this idea! I know I am not the only person whom adversely responded to hormone manipulation and, based upon my clinical response with their use, would have been dismissed for endometriosis! It was bad enough to go three decades without a diagnosis. In my personal situation, a history of recurrent catamenial scapular and chest pain; catamenial pneumothoraxes and bowel and bladder symptoms are 95.9%,89.2% and 97.9% specific that endometriosis is present.(6) Yet despite all these, the general ob/gyn was convinced that my symptoms must diminish if I had endometriosis. This did not happen. Attempts with medical management escalated the rate and degree of disease activity!m
My story is not unique. There are many women who have been subjected to hormone manipulation as a ‘diagnostic tool’ for endometriosis yet these drugs have NEVER been approved for this purpose. And now, there is discussion to do just this.
Seriously! If the diagnostic pathway for endometriosis is modified to a non-surgical process with hormone manipulation as the foundation, I fear the number of women with endometriosis whom are dismissed of the disease. Yes, surgery has risks. But hormone suppression also has risks, and individual responses to their use is not consistent, along with unpredictable long-term side effects that cannot be determined prior to treatment intervention. The probability that persons with and without disease may not respond to use of hormone manipulation according to presence/absence of disease is a significant concern. Diagnosis and misdiagnosis without objective evidence normally acquired with direct observation obtained through surgery creates entirely separate concerns for potential malpractice with error in diagnosis, treatment and management.
There WILL BE those with endometriosis whose symptoms are not reduced with use of hormone suppression and there WILL BE those without endometriosis whose symptoms are derived from other conditions but relieved with use of hormone suppression.
The way things stand today, it appears those in the drivers seat are not interested in moving over. Until they no longer control the direction of research and treatment of the disease, it seems we, the passengers are being forced to endure an ill-fated journey. But, I feel a growing restlessness among my fellow passengers to push the drivers out from behind the steering wheel and set a new course.
On behalf of 176 million sufferers,
September 19th, 2019
(1) Becker CM et al. Reevaluating response and failure of medical treatment of endometriosis: A systematic review. Fertil Steril.2017;108(1). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494290/
(2) Casper RF. Introduction: a focus on the medical management of endometriosis. Fertil Steril.2017;107:521-
(3.) Ledger W, Schlaff WD, Vancaillie GT (Eds). Chronic Pelvic Pain. Cambridge University Press. Dec 11th, 2014. pp 66-67.
(4.) Kochhar PK, Ghosh P. A Comparative Study of the use of different energy sources in Laparoscopic Management of Endometriosis Associated Infertility. WJOLS. 2011;4(2):89-95. doi:10.5005/jp-journals-10007-1123
(5.)Martin Healey, MD Claudia Cheng, MB;BS Harvinder Kaur, MB;BS. To excise or ablate endometriosis? A prospective randomized double blinded trial after 5 years follow-up. JMIG. 2014;21(6):999-1004. 10.1016/j.jmig.2014.04.002
(6.) Rousset-Jablonski C., Alifano M., Plu-Bureau G., et al.Catamenial pneumothorax and endometriosis-related pneumothorax: clinical features and risk factors. Hum Reprod.2011;26(9):2322-9. doi: 10.1093/humrep/der189.
Coming soon: Blog #6 The presence of endometriosis lesions, its treatment and development of CAD/CVD: association or causation?
Blog #4 Aquatic Therapy for Endo?
As a practicing physical therapist, my appreciation for the water developed from experience and outcomes of patients.
I was blessed to treat patients across a spectrum of diagnoses and functional abilities at inpatient and outpatient centers. Those I most worked with involved neurological (ie. stroke, brain tumors, spinal cord injuries, guillaine-barre syndrome, parkinsons disease) or orthopedic conditions (ie. spine and degenerative conditions, joint replacements and overuse injuries), but other diagnoses were mixed in (ie. COPD, complex comorbid conditions).
I never treated a person for effects of endometriosis in a water environment. That is, until, the practitioner became the patient.
Let’s first discuss the unique properties of water and their application to rehabilitation. Water is a wonderful medium that can restore, improve or maintain strength, flexibility, body awareness, agility, coordination, endurance, cardiac and respiratory conditioning; all while promoting emotional and physical relaxation. Water’s unique properties include: bouyancy, density, hydrostatic pressure, turbulence and viscosity.
Moving slowly through water requires less effort than on land. Thanks to buoyancy. Buoyancy makes us to float. To move faster through water, more effort is required. Unlike movement on land, water causes movements to stop when effort is discontinued. This occurs due to viscosity. A body’s shape and speed as it moves through the water determines the amount of drag produced. Faster the movement, greater the drag.
Practical Demonstration:Stand up. Start with your arms straight, and by your sides. Swing one arm (from the shoulder) forward then continue backward one time. Once the arm reaches as high as you can behind you, stopping using any effort to make your arm move. What happened?
Expected Result on Land: On land, when you stop using effort after your arm reaches its highest point in the air, behind your back; force of gravity, and pull of stretched tissues will cause the arm to move downward and pass forward of your body passively. The arm may continue to move in progressively smaller forward-backward pendular motions until eventually stopping alongside your body, where it began.
Now, lets perform the same motion, completely submerged under water. What do you think would happen?
Expected result under water: When effort is stopped as the arm reaches its highest point in the backswing, the absence of inertia (present on land) prevents the limb from continuing pendular motions of progressively smaller arcs before the limb comes to rest. This can be advantageous for those whose symptoms are easily provoked. The limb may remain fairly stationary, behind you, near the height of where you stopped using internal effort. If the stretch of tissues across the chest and anterior limb are taut enough, it may cause the arm to drift downward a small amount toward the starting position but would not be sufficient enough to create any pendular motions.
Another property of water is hydrostatic pressure. The deeper you are immersed under the water’s surface, the greater the forces of hydrostatic pressure on your body. Hydrostatic pressure contributes to an elevated work of the cardiovascular system and efforts of the respiratory system.
When the body’s immersed below the water’s surface, pressure from the surrounding water results in a greater amount of venous blood flow back to the heart than that on dry land for the same position or activity. Deeper immersion equates to greater venous return. In depth at the shoulders/neck, immersion can increase venous blood return to the heart by 35% compared to the same task on land.
As returning blood flow increases, the heart adapts by increasing its stroke volume. (Stroke volume – the amount of blood distributed to the body during a single heart contraction). An increased stroke volume is the primary accommodation for greater blood returning to the heart. As a result, much less change occurs in blood pressure and heart rate with exertion under the water’s surface.
As more deoxygenated blood returns to the heart and lungs, more oxygenated, ‘good blood’ is available to working muscles. Up to an addition 1/3 of available nutrients and oxygen is available to individuals who are submerged midchest-to-shoulder depth when compared to land. The amount of additional peripheral blood flow parallels the depth of immersion (ie. waist deep immersion provides less of an increase in peripheral blood flow when compared to chest deep).
A water program can be an adjunct to a land-based program in the management and treatment of endometriosis symptoms and post-operative reconditioning. The following is my own testimonial of water’s impact on symptom’s pre and postoperstive, and its properties as they relate to rehabilitation of the condition. As the ‘great masquerader’, we know endometriosis and its comorbid conditions have a vast presenttion. Hence, each person’s needs and appropriate interventions will differ accordingly.
The Physical Therapist as the patient:
I had an appreciation for the water environment as a Physical Therapist.
I have Love and Deep Respect for water. It began when endometriosis took away my ability to work, manage our home, cook meals and walk without pain. Water was an excellent adjunctive therapy environment. My water sessions complimented my land treatments to address pelvic floor, abdominal viscera, diaphragm, thoracic and myofascial restrictions with a Women’s Health Physical Therapist. For many months prior to, and following excision surgery, the pool was a reprieve. Before surgery, I couldn’t walk, sit, lye down or move from one position to another without sharp pains emitting from adhesions of my ribcage, liver, abdomen and pelvis, nausea, even an odd vomit.
Simply sitting below the water’s surface was relaxing, yet my cardiopulmonary system was challenged.
The water slowed my movements waaaaaay down; more than I had already slowed in the preceeding years. However, the reduced speed of motion, coupled with warm temperature and pressure of the water, dampened the pain I usually experience walking on land. The water invited me to M-O-V-E . The deeper the water, the more effort was needed to work. Increased effort was needed to overcome water’s viscosity and the drag induced when moving at greater speeds. Hydrostatic pressure and buoyancy reduced the loading impact and pain associated with adhesions and also ‘cushioned’ my internal organs during movements. The deeper I immersed, the more sloth-like I moved. But it was gooooood.
The normal pain I experienced walking on land was much gentler under water. The best part; I had more control! Control, and the lack of it; something familiar to those with endo. In the water, I had far greater control of symptoms attributed to adhesions, hypersenstivity, exposure of my digestive and urinary systems and irritation of disease of the respiratory system. Slowing of movements under water and dampened pain sensation gave me extra time to assess and adjust to symptoms. The water was a great micromanager of symptoms through movements that could only be macromanaged on land; particularly with the additional effects of brainfog and anxiety for unexpected pain dividing my compromising my attention.
Water, Nervous System and Desensitization:
The warm water and submersion prompted me to relax and move! My sympathetic nervous system, ALWAYS on overdrive from self-perpetuating aspects of the disease, took short-term hiatus during my water sessions. It was during these sessions my parasympathetic nervous system was most active; providing both short and longer term benefits. Water sessions gave me a ‘feeling of wellness’. By progressing depth, amount of turbulence and duration of these sessions over many months, my sympathetic nervous system gradually became less ‘jumpy’.
Like many others with endo, my tolerance to touch or pressure across my abdominal area was poor. It was difficult to wear anything around my midsection or rest my hand on my stomach without a wave of nausea or stabbing sensations. By adjusting how deep I immersed myself in the water, I controlled the amount of hydrostatic pressure the water emitted on my body. Some days sessions were shallow, other days deeper immersion.
In the long term, I was able to progress to deeper and longer immersion consistently. The effects: my skin and visceral organs desensitized to pressure. My brain stopped interpreting pressure variations across my abdominal skin and organs as ‘bad’ and the nausea resolved. My sympathetic nervous system settled down. (There are numerous aquatic therapy techniques beyond the discussion of this blog for desensitization, relaxation, flexibility ie. Watsu https://www.watsu.com/ )
Water, Digestive and Urinary System:
Deeper immersion and greater movements of speed and range also encouraged my slowed digestive system to move along a bit quicker and with less ‘stressful’ bowel movements (yeah!!! goodbye Mirilax!). I felt like I received a bonus prize!
In regards to the bladder, after facing numerous episodes of interrupted pool sessions to emptying my bladder (and, despite immediately voiding before starting each pool session), my bladder underwent ‘retraining’ for premature urgency to void before the bladder was adequately filled (overactive bladder). The water’s hydrostatic pressure added indirect additional force’s externally to the bladder. This, in addition to the water’s promotion of increased urine production through kidneys was an efficient method to reduce my urinary urgency. It was annoying early on, having to leave the pool within a session to to void, but, over a period of time this improved did not interfere with extended pool sessions.
Water, Fatigue and Chronic Fatigue Syndrome (CFS):
Struggling with heavy fatigue and inability to move on land, the water encouraged me to move. I was not unlike many with endometriosis. We often find ourselves close to a bed, sofa, recliner, or not far from home. Excision of endometriosis lesions often resolves the immense fatigue that often accompanies the disease. For some, degrees of fatigue persists. There are many non-endo variables which can contribute to fatigue (beyond this blog’s focus) and should always be explored (ie. anemia, dietary sensitivities/allergies, autoimmune or other medical conditions).
Among other conditions (ie. fibromyalgia), endometriosis has a higher association with Chronic Fatigue Syndrome (CFS) than the average population. For those who experience fatigue, (with or without CFS), the properties of water can provide benefits for those intolerant to most dry land activities. As water facilitates deliver of oxygen and nutrients to muscles, (through increased peripheral blood flow), the amount of time needed post-activity to recover is reduced. There are also concerns for the use of a water environment for some with CFS. Some may have difficulty exiting the water as the effects of gravity become immediate; have an inability to monitor for waning energy to safely exit the pool; respond adversely to water temperature or a busy pool environment. If there is consideration to undergo an aquatic therapy program, it must be discussed with your physician and initiated and applied 1:1 by a certified Aquatic Physical Therapist.
Scientific Note: Aerobic vs Anaerobic Respiration and Concentric vs Eccentric Muscle Contractions
Evidence suggests dysfunction of the aerobic system (Krebs cycle) among those with CFS. This equates to an reduced ability to create ‘ATP’. ‘ATP’ is the body’s ‘energy molecule’ used by muscles to create a contraction. During normal activity, when we are not ‘oxygen starved’, the body breaks down energy stores with oxygen to generate ‘ATP’. It is theorized that a person’s with CFS defaults to creation of ‘ATP; from the less efficient and productive anaerobic cycle. Unlike the aerobic energy production system, the anaerobic system is only designed for brief periods of time. As a result, fatigue sets in and the production of ATP ceases. A water environment provides ease of slow movement and concentric muscle contractions, both which require less consumption of ATP. With an inability to produce a continuous supply of ATP that would be generated through normal aerobic kreb cycle production, sedentary immersion in chest to neck depth creates an elevated respiratory demand up to 60% greater than experienced on land. The increased workload on inspiratory muscles provides conditioning and endurance.
Recall that buoyancy makes it easier to move under water. Water also creates an environment in which body uniquely moves through concentric muscle contractions. Concentric contractions are easier for the body to repair, recover and build muscle tissue, compared to eccentric muscle contractions. Movements under water are created mostly through concentric muscle contractions, unless resistive devices are used. On land, movement is created from both concentric and eccentric muscle contractions. Eccentric contractions create more metabolic by-products and damage to the skeletal muscles. Those with CFS have limited spoons. Literally.
Effect of water temperature and recovery rate:
If water temperature too warm, it can result in the muscles creating byproducts faster than the blood stream can remove it, despite the enhanced venous return and stroke volume water provides. The effect leads to earlier fatigue and slower rate of recovery.
I am three years removed from time when water was central in my life (since excision surgery). After I reached a functional level, I didn’t stop entering the water. For many with fatigue, the water is easier to tolerate for conditioning than land based activities.
Always the practitioner treating the patient-in-the pool, never expecting to be THE patient-in-the-pool. Like many role reversing experiences, it can be life changing.
A special note about hydrostatic pressure and the respiratory diaphragm:
As mentioned, hydrostatic pressure rises as depth of immersion increases. As pressure rises, the position of the diaphragm changes. With higher hydrostatic pressure, the diaphragm resting position becomes more dome-like (arched). These changes increase the ease and ability to produce greater contraction force of the diaphragm. As the primary muscle of respiration, the enhanced position of the diaphragm created through hydrostatic pressure forces augments stronger more efficient contractions for inspiration. Meanwhile, supplemental and accessory muscles of inspiration undergo increased resistance from water’s counterpressure on the chest wall. Up to 60% greater effort is necessary for the intercostal and accessory inspiratory muscles to contract when submerged to mid-chest.
With water’s ability to optimize the position and shape of the diapragm many activities can be incorporated from a dry land program with guidance. A carefully graded program can improve endurance of the diaphragm and intercostals without recruitment of accessory muscles (ie sternomastoid, pectoralis minor, scalenes etc) that are less efficient and contribute to postural imbalances. Progression from land based pelvic therapy program can be carried over to further neuromuscular training of the pelvic floor and diaphragm movement through the respiratory cycle. The incorporation of functional movements can be overlayed , with enhanced body awareness provided by the water.
A special note about Osteoporosis:
Those with osteoporosis (natural or surgically induced menopause or from exposure to GnRHa use) CAN benefit from Aquatic Therapy. Although Hydrotherapy (Aquatic Therapy) does not promote bone density, it does promote cardiovascular conditioning, strength, coordination and agility; necessary traits for balance on land. Improved balance equates to reduced risk of a fall. Reduced fall risk equates to reduced risk for broken bones.
“…aquatic exercise does have a fitness role in women at risk for,or with osteoporosis as there is considerable data that such programs would build strength and endurance, and there is generally an accompanying improvement in balance skills, self-efficacy and well being” – Bruce E. Becker (2009)
Those with osteoporosis should still be encouraged to participate in some form of weight bearing, resistance activities on dry land with a supplemental water environment program.
Is Water Therapy appropriate?
- When is hydrotherapy inappropriate? For those with an acute or unstable heart condition or chronic fatigue syndrome (congestive heart failure, recent heart attack or CFS episode) hydrotherapy should not be considered.
- For those with sensitivity to warm temperatures (ie multiple sclerosis) a pool program can be beneficial if operating pool temperatures are cool.
- For those with indwelling catheters or ostomy bags, discussion with your care team and an aquatic therapist on limitations or requirements for their management are necessary.
- For those post-operative: surgical clearance (ie. hysterectomy – is vaginal cuff healed; surgical incisions/ drainage sites (ie chest tubes) fully healed or covered with waterproof bandages).
Trish (July 29th, 2019)
(Note: The content of this blog is for discussion and should not be substituted for consultation with medical provider)
Aquatic Therapy: Scientific Foundations and Clinical Rehabilitation Applications. Bruce E. Becker, MD, MS. Phys Med Rehab. 2009;1:859-872. 10.1016/j.pmrj.2009.05.017
A Randomized Clinical Trial of Aquatic versus Land Exercise to Improve Balance, Function, and Quality of Life in Older Women with Osteoporosis. Arnold CM, Busch AJ, Schachter CL , Harrison EL, Olszynski WP. Physiother Can. 2008 Fall;60(4):296-306. doi: 10.3138/physio.60.4.296. Epub 2008 Nov 12.
The real story about chronic fatigue syndrome. Eric Ries (Associate Editor: PT in Motion). PT in Motion. September 2017. https://www.apta.org/PTinMotion/2017/9/Feature/ChronicFatigue/
How Physical Therapists are getting it about Chronic Fatigue Syndrome (ME/CFS) The Workwell Foundation Pt. 1. Cort Johnson. Oct 10, 2017. https://www.healthrising.org/blog/2017/10/10/physical-therapy-workwell-chronic-fatigue-syndrome/
Blog #3: FHCS vs Endometriosis:
Endometriosis of the diaphragm and/or liver can be mistaken for what? An STD?
Late last year an article about Pelvic Inflammatory Disease (PID) and associations with endometriosis was discussed online in the FB Group: Nancy’s Nook Endometriosis Discussion and Education Group. The article led me to recall a discussion with my primary care provider a few years ago. That discussion came during an office visit while reviewing intra-operative photographs of extensive thick white adhesions and scarring of the right upper abdomen, liver and diaphragm.
I know I’m not the first woman approached by a medical provider about PID. The topic caught me off guard. I knew about Fitz-Hugh Curtis Syndrome (FHCS) and its relationship to Pelvic Inflammatory Disease (PID) from my graduate studies. I never imagined being questioned about my own intimate behaviors and choices.
Given the professionalism of my provider, and his rapid dismissal of the possibility, I was blessed not to face a barrage of questions with inquisitive tone and facial expressions other women have, and will experience. However, I did have brief, internal feelings of embarrassment, uncleanliness and shame even though my personal behaviors and actions have never been conducive to acquire a Sexually Transmitted Disease (STD). I also knew my provider was not passing judgment or perceived me in any way to suggest I was a risk taker with multiple partners. However, about a week after this recalled memory, I experienced a second incident that centered around lack of awareness and misconceptions of endometriosis.
Social media platforms are great methods to amplify information and newsworthy material. Regrettably they create equal opportunity to distribute erroneous information. A lot of users post or respond based upon their perceptions, which are created through their experiences and information they have received (accurate or inaccurate). Through social media, I reached out to a politician in regard to women’s health funding and deficiencies specific to endometriosis. A response from a member of the public stated the disease could be ‘cured’ with ‘moral behavior’ and ‘better dietary choices’. It was also implied, those with endometriosis are 100% responsible for developing the disease. I have no words for what I felt at the moment. But…I can do something.
The recalled memory of my experience with a medical provider and written exchange with a member of the public prompts me to raise awareness about diaphragmatic endometriosis. Specifically, endometriosis of the diaphragm should be a differential diagnosis among females who present with right upper quadrant abdominal pain (with or without referred pain to the right shoulder) and/or adhesions viewed with imaging or surgery at the diaphragm and liver.
Advocates continue to speak out to correct the myriad persistent myths and misconceptions that stigmatize and cause, not only physical harm through delay and appropriate care, but also mental and psychological harm. An average 7-to-10 year delay (for some, decades) to diagnosis is unacceptable. To add further insult to those with endometriosis, the absurd premise still perpetuated today; persons with endometriosis are 100% to blame for their disease. Uninformed members of society still perceive those with endometriosis ‘had it coming’ and ‘reap what they sow’ through lifestyle choices and experiences. Among the more common myths: amoral sexual behaviors, sexual abuse, poor diet, exercise and stress management. The majority of healthcare organizations, associations and societies continue to disperse outdated, inaccurate information, myths and misinformation that reinforce misconceptions. These are all issues which harm the well being of women with endometriosis.
It’s important to clarify that PID and development of FHCS has occurred in ways other than unprotected intercourse. A few other ways documented include: insertion of an IUD, post-renal transplant with mycoplasma hominis infection, tubal ligation and appendectomy.(1,2,3) Although FHCS is more common among young female menstruators, it has occurred in women post-menopause,(2) and among men.(4,5,6) FHCS-like adhesions can also occur with Systemic Lupus Erythrematosis, Familial Mediterranean Fever (FMF),(1,2,7) Peritonitis, Acute Cholecystitis and Carcinomatosis(5) can present with FHCS-like adhesions. Not all cases with FHCS have been able to determine its original cause. (5,6)
What exactly is FHCS and why should healthcare providers and the endometriosis community know more about it? (To continue reading: FHCS vs Endometriosis: Endometriosis of the diaphragm and/or liver can be mistaken for what? An STD? )
Trish (June 11, 2019)
Blog #2: Another Awareness Month comes to an end
For those in our community, awareness is not confined to one month each year. A full month is a blessing to pack endometriosis awareness activities, educational events and projects into. It’s also a slippery slope for many to stay within the allotted spoons available versus spoons used. Awareness Month challenges advocates to vigilantly pace spoon use. To ration spoons through an entire Awareness Month is a herculean feat that most of the general population is oblivious to. Advocates oft’ navigate their own health issues toward the goal of greater good for others and future generations. Knowing a monstrous number of spoons were expelled among our community throughout the month of March, looking back, was it successful?
How do we quantify success?
- If success equals progress with updated care standards and treatment guidelines, then No.
- If success equals recognition of extrapelvic endometriosis and inclusion among care standards, treatment guidelines and FAQ’s among governing organizations of Gyn, then No.
- If success equals the media getting the definition of endometriosis correct, then Yes and No.
- If success equals acknowledgement of Endometriosis Awareness Month by the American College of Obstetrics and Gynecology, then No.
- If success equals an increase in financial resources for endometriosis research, if a ‘a wee bit’ is acceptable, then Yes. Elise Courtois, PhD ; Dr. Holly Harris
- If success equals the development of updated medical school curriculum about endometriosis, then No.
- If success equals the recognition of ‘excision’ as Gold Standard surgical treatment for disease, then No.
- If success equals recognition of endometriosis as a specialty (with established criteria of didactic, clinical and surgical skills for certification), then No.
- If success equals an increase in the number of grassroots patient advocates, groups and organizations with activities/events independent of pharmaceutical investment or influence, then Yes!
On that, we still have a lot of work to do. Work which will not wait until next March to begin again. Work which many, many unacknowledged persons use their precious spoons to address. What IS beautiful and successful…the rising up of those with this disease helping others with this disease.
All of our awareness events and projects have common purpose: provide correct information, acknowledge the battle, and through the use of various platforms and mediums, those without the disease have opportunity to feel and sense a little of our world.
Those with endometriosis are finding, and using their voices, telling their stories, less in isolation and more in collection. Expunging old myths, raising awareness to disease diversity, its potential for body-wide lesions and systemic dysfunctions.
‘Voices’ this month were raised in the form of public marches; a town hall meeting The Endometriosis Summit (video of event can be accessed at Lumenis FB Page ); educational and social gatherings in our communities across the globe; screenings of the documentary ‘Endo What?’ (Endo What?); art exhibitions (Beyond Invisible Art Exhibition ); journalism (How to support a loved one with endometriosis); provision of testimony to state and local governments (Endometriosis Advocates approach government officials about women); and release of a new publication (for those with endometriosis by those with endometriosis)! These are only a sampling of accomplishments this month.
What’s exciting about this new publication? FemTruths: Endometriosis Edition-Collection of Stories from Courageous Women (Editor: Silvia Young). It is the first in a series of personal, short stories and artwork from those with endometriosis. Stories gathered from around the world; This is the little-book-that-could. Within its pages, the reader is exposed to the parasitic nature of endometriosis on the human experience. The written thoughts and artwork powerfully portray reality of life with this disease. Unless you, or someone you care for has endometriosis, what you were told and thought you knew, are outdated, inaccurate or only a small portion of the disease. (Spoiler alert: among the books pages, includes the evolution of Trish).
As another Endometriosis Awareness Month has closed, our community remains the underdog. With limited resources to draw attention around the injustices we continue to endure, fighting for what is right, remains a driving force among our community.
But Wait…Today, the air stirs with a sense of unrest and forming cohesion. This is good. It is the continued injustices that give cause to why, “Still I Rise” – Maya Angelo
Trish (April 4th, 2019) Tweet Trish’s Blog
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A serious flaw in the medical knowledge systems: when information is wrong, starting at the top.
We learn about our world through experiences; what we experience firsthand, read and watch streamed through various information and ‘quasi’ information platforms. Some is ‘self-selected’ and some is ‘spoon-fed’ to us with others controlling the content and direction of a given topic.
This is not limited to news organizations. Entertainment outlets attempt to share ‘important information’ as well, watered-down for appeal and easy reading. Unfortunate, but not unexpected, this often results in a product that is far from accurate. But what happens when authoritative ‘sources’ – presumed to be ‘gold standard’ are also out-dated?
Sadly, women’s health, THE most underfunded, neglected specialty, yet most important to ensure continuation of a healthy species, remains captive to the patriarchy and prisoner to the for-profit and personal interests of those who dictate the course for progression. The sub specialty of endometriosis has experienced almost no progress for decades. To wit:
I recently read an article in the Journal of American Medical Association (JAMA), THE journal most healthcare practitioners in America consider ‘Gold Standard’. Indeed, Jama states they are “the most circulated journal in the world with more than 320,000 JAMA recipients of the print journal, 1.2 million recipients of electronic tables of contents and alerts, and over 20 million annual visits to the journal’s website.” Unfortunately, the feature presented to the vast audience of practitioners, policy makers and members of the public was of the poorest quality [Peiris, AN, Chaljub E, Medlock D Endometriosis. JAMA.2018;320(24):2608] . As such, a response was necessary. Importantly, the premise of my response was not to attack the authors. Rather I sought to raise awareness on the pandemic proportion of misinformation that continues to plagues our knowledge systems at a time of ‘Evidence Based Medicine’.
It was with high hopes that this prestigious journal, with a massive following, would accept my Letter of Response to the article ‘Endometriosis’. Today I received notice, however, that the editorial team denied my submission on the grounds that it lacked ‘high enough merit’. They also cited less pertinent concerns (ie. ‘limited space’). The Response Letter can be read here: letter of response to jama.
As a writer, I expect denial. As an educated advocate, witnesses to the numerous injustices those with endometriosis continue to face year after year, for decades while other areas of healthcare evolve, I feel hostage to the system that revolves around the daily onslaught of misinformation that starts from the very top.
It is a system with intent to provide the most accurate information yet, those within the very system itself are blinded to the misinformation they promote. Perhaps they are aware of the concerns yet perceive the topic endometriosis – insignificant. Or perhaps, in the paltry 400 word limit, they allow, I should have used ‘shock and awe’ in my Letter of Response highlighting the destructive nature of endometriosis beyond menstruation. Destruction that includes kidney death, bowel obstructions, collapsing lungs and coughing up blood – conditions still perceived as ‘rare’, when in fact, they are not.
The plethora of injustices and complications which can occur with endometriosis provides endless topics for a writer. Unfortunately, always having to be the ‘reactor’ and ‘put the flames out’ within a tiny envelop to work in makes the mission of an advocate far more difficult than it should. When the system blindly gives a platform where millions of readers will access inaccurate information, I ask the system, when will we, as advocates and survivors, be given the equivalent platform to share accurate information?
Trish (January 29, 2019) Tweet Trish’s Blog
Thoughts? Please leave any comments below.
All Rights Reserved © 2019 Wendy Bingham, DPT. Extrapelvic Not Rare