Trish Blogs about Endo

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)       

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Blog #1:

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)  

Thoughts? Please leave any comments below.

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All Rights Reserved  © 2019 Wendy Bingham, DPT.  Extrapelvic Not Rare

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