A Letter to Providers from Two Endo Patients

A Letter to Providers from Two Endo Patients

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Two people with endometriosis wanted to share their story of how providers made a difference in their journey. Based on their experience, they share their thoughts on what healthcare can do to make a difference. A big thank you to all the providers who have helped us on our journey. You will never know how much it meant and what a difference it made in our lives. Read on:

At 14, I got my first period.  I remember distinctly when I saw my regular pediatrician, and she asked about my monthly period.  I told her that it was painful, and I was overwhelmingly exhausted.  I very vividly remember my female pediatrician quietly shutting the door of the exam room and explaining to me that this is “normal”, that she too is often very tired during her period and has cramping.  Little did I realize at that time, that historically and culturally, medicine has diminished and frequently discredited the pain that women had during their menstrual cycles – labeling it as “hysteria”.

When I was first diagnosed with endometriosis, I (along with most newly diagnosed) had no understanding of the challenges that would be placed in front of me.  I naively believed that my doctors would have answers, that I would receive the right treatment, and that I would be able to move on with my life.

And then I realized how woefully incorrect I was.

So, in 2020, what can be done differently?  Can we do better?  WE CAN and WE MUST!

As physicians, you may not ever understand what it is like to have endometriosis. Especially if you are a male.  And that is okay.  We, as patients, understand and do not expect you as a physician to completely get it.

However, please understand that endometriosis does NOT affect every person the same way.  One person may not be able to function, unable to go to school or work, when she has her period.  Another woman may have stage IV endometriosis and adenomyosis and work an incredibly demanding job and have a more demanding schedule- long days, long nights, and often working weekends.  Yet, she still functions and gets by.  While another woman may be struggling to keep up with her college classes so much that she must drop out of college and cannot work due to her pain levels (even though she is found to “only” have stage II endometriosis).  Another woman may be struggling to get pregnant but denies any obvious symptoms of endometriosis- yet during a diagnostic laparoscopy, she is found to have stage III endometriosis.  Here alone are several DIFFERENT women with all quite different presentations of this disease.

In addition to understanding the patient experience, understand that many of us have been through a long journey to get a diagnosis and to find treatment.

Many tell us to get pregnant and we would be cured.  Gynecologists have said that many people experience a reprieve from symptoms during pregnancy and breast feeding.  But have symptoms return shortly after.  What if I took that advice?  As a single woman just trying to finish college, surviving only on heavy duty narcotics, how could I possibly manage the care of a child?  Would I have made a good mother having to take a long leave of absence from my dream job due to severe pain? I was not the first person to ever receive this piece of advice and sadly we will not be the last. (See Myths and Misinformation)

Many have told us that taking hormonal treatments – continuous birth control, Lupron, Synarel, Danazol, Depo Provera, Orilissa, or other like drugs, would make us feel better.   For some people, it may have helped them.  However, many of us have walked away with minimal to no relief – instead, a slew of different side effects.  Hot flashes, migraines, fatigue, brain fog, bone loss, worsening pain.  Sometimes the side effects would go away.  Sometimes not.  As a 21-year-old college student, I had the early onset of osteoporosis.   Eventually these side effects went away, or I was able to reverse them.  For some, they are not as lucky and are stuck with permanent side effects.  I was lucky.  (See Hormonal Treatments)

Sometimes we are told that having surgery every couple of years is something to be expected when living with endometriosis.  Ablation is the only way to remove endometriosis.  Just get used to it, I was told.  That is what happens when you have endometriosis.

And then I learned different.  I found resources such as the Endometriosis Research Center – their Yahoo ListServ (okay so maybe it dates me) and Nancy’s Nook on Facebook.  I learned about excision surgery and found a specialist.   The answer was there all along, but the doctors around me did not know that it was an option.  Some can excise some endometriosis but not all areas- or do not have the knowledge to recognize some different appearances of endometriosis.  Many of us unfortunately must travel to another state or even to another country to seek out better, more specialized care.  Often those impacted by endometriosis must pay privately for expert care or fight their insurance companies for coverage of expert care.

Our health care system can do better.  We CAN do better, and we will DO better.  So, how do we do that? How can patient care providers/health care providers do that?  How can they help their patients as they struggle with endometriosis?

It is called providing patient-centered, evidence-informed, patient care.  So, what does that mean? What does that look like?

Guekens (2018) and his colleagues identify 5 different dimensions of patient-centered endometriosis care:

1. Respect for the patient’s values, preferences, and needs

2. Information, communication, and education

3. Continuity and transition

4. Access to care

5. Technical Skills

From another patient story we see such an example:

When I was in college and my local OBGYN realized that my endometriosis was more complicated and severe, she referred me to a specialist at a university level hospital – her professor.   She realized that I needed care beyond her capabilities, so she referred me out.  THAT is patient-centered, evidence-informed, patient care.

When that specialist respects my hope to finish a year of college, provides me with pain management techniques, and puts off surgery until I am ready.  THAT is patient-centered, evidence-informed, patient care.

Eighteen years ago, I came across an organization called the Endometriosis Research Center and learned from some very smart women and physicians the concept of excision surgery.  I learned about the best evidence-based treatment for endometriosis is excision.

A wise mentor and fellow endometriosis patient once told me that “communication is useless if you perpetuate misinformation” (Pierce-Richards, 2019).   We CAN do better.  It is YOUR responsibility to educate yourself, your staff, and your patients.  What we say about endometriosis matters and it CAN be life changing for that patient, to finally be listened to, their suffering be acknowledged, accepted, and addressed.

Two years ago, my endometriosis symptoms worsened to the point where I could barely function.  Getting to work every day, taking care of my daughter, and just keeping up with day-to-day responsibilities was nearly impossible due to pain and it exhausted me. I spent a lot of time in bed. I initially saw my local OBGYN and contemplated having surgery with her as she was local.  However, after reviewing research and learning how effective excision surgery is, I sought out opinions from a couple of local endometriosis excision specialists and a well-known endometriosis excision specialist across the country. (See Why Excision)  I then spoke with my local primary care physician whom I worked with and told her that we had chosen to travel to Washington to obtain better care. She supported my choice and was instrumental in coordinating my care prior to leaving for Washington and when I returned.  Each transition was easier because she was there advocating for me and was a quick phone call away with any questions or concerns.

What if there was a physician that respected your values, respected you for where you were in your journey, and respected your preferences/needs?

What if there was a physician that, although was not considered an expert in endometriosis, but was able to refer their patients to accurate, up-to-date, reliable sources of information about endometriosis?

What if that very same physician helped facilitate their patient receiving effective, evidence-based treatment – i.e. excision surgery? This physician could write a letter supporting the patient’s decision to seek out expert care to help the patient with their insurance appeals or help ease the transition when they return home after surgery.

What if that physician desires to learn more about endometriosis and wishes to become a specialist? To learn about the expertise of excision surgery and to expand their knowledge?

We can very quickly say (ALL of us) how unhappy we are with the year 2020 and the current state of affairs. 

We can simply blame it on poor reimbursement by insurance companies . Yes, that’s a problem.

We could say that there is not enough time in an appointment to devote to these patients.  Yes, we see that.

We could say that due to COVID, we cannot travel or attend any conferences. Or that we cannot possibly attend another meeting via Zoom.  Yes, we can certainly say that. 

We could say that our budget is limited due to COVID-related shut downs, I cannot afford to spend more on education.  Yes, we could say that too.

Here’s the deal – YOU can be that physician! We could come up with a million reasons why it will not work.   However, YOU always have an opportunity to learn.  Brian Tracy once said “those people who develop the ability to continuously acquire new and better forms of knowledge that they can apply to their work and to their lives will be the movers and shakers in our society for the indefinite future” (Tracy, n.d.).

Will you take the opportunity to be that “mover and shaker” in society that leads to positive change?

References

Geukins, E. I., Apers, S., Meuleman, C., D’Hooghe, T. M., & Dancet, E. A. F. (2018). Patient-centeredness and endometriosis: Definition, measurement, and current status. Best Practice & Research. Clinical Obstetrics & Gynaecology, 50, 11-17. https://doi.org/10.1016/j.bpobgyn.2018.01.009

Pierce-Richards, Susan (2019, November 9-13).  Brokengirl: The Secret Shame of Chronic Pelvic Pain and the Unseen Consequences of our Current Care Paradigm for Endometriosis Care [Conference Presentation]. AAGL 2019 48th Global Conference on MIGS.  Vancouver, British Columbia, Canada.

Tracy, Brian. (n.d.). Quotes by Brian Tracy. Good Reads. https://www.goodreads.com/quotes/524089-those-people-who-develop-the-ability-to-continuously-acquire-new