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 Griswold’s, 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 who will be dismissed of the disease (in addition to those past and present). Yes, surgery has risks; but hormone suppression also has risks. The response to their use is variable and not consistent. There are also many 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. There also 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,
(1) Becker CM et al. Reevaluating response and failure of medical treatment of endometriosis: A systematic review. Fertil Steril.2017;108. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494290/
(2) Casper RF. Introduction: a focus on the medical management of endometriosis. Fertil Steril.2017;107:521-27.
(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.