What I Wish Doctors Understood About Endometriosis

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It is a rare endometriosis patient who doesn’t have a few things to say to her doctors past and present.  Most of us have had to fight long and hard (an average of 7+ years) just for an accurate diagnosis let alone effective treatment.  Naturally, we have encountered more than a few doctors along the way.

 

As a fellow health professional, advocate, and longtime endometriosis patient myself I have had my fair share of both positive and negative experiences with doctors and nurses and have heard many flat out heartbreaking if not appalling stories from others.  The same themes of patient dismissal, misinformation/out of date beliefs, and paternalistic attitudes repeat themselves over and over again.  It is a serious problem that needs to be addressed.

What I wish my doctor understood about endometriosis. Via @bcnutritionista

Image: Pixabay

 

So why bother writing?  My intention is to help bridge the gap between patients and physicians to help heal the doctor patient relationship so we can work together productively and make a meaningful improvement in the lives we touch.

 

We Appreciate You

A doctor who listens, helps, and can admit their limits is worth their weight in diamonds.  We are incredibly grateful to all of the dedicated health professionals who believe us, help us, and refer us to specialists who have a greater level of expertise and skill when necessary.  Thank you for everything that you have done and continue to do.  Your compassion, skill, and dedication heal lives.

 

The Pain is Real and Intense

Let’s get really real here for a minute. Endometriosis fucking hurts.  It isn’t just a passing discomfort or a little twinge here and there.  It isn’t something that popping a couple of OTC pain relievers resolves.  We’re talking covered in cold sweat, shaking, puking, and fainting on the bathroom floor kind of pain intensity.  It is not uncommon to hear from endo patients who have gone through natural labour and childbirth say it was really nothing in comparison to their endo pain.

 

I have heard of many stories of women who have had a burst appendix, bowel obstruction, ovarian torsion and other such medical emergencies who didn’t initially seek medical care as they assumed it was “just” an endometriosis flare and were afraid that they would be humiliated in the ER yet again.  This should speak volumes.

 

There is a reason why, according to an Endometriosis UK survey, an alarming 25% of endometriosis patients have considered suicide.  The pain is so intense and the disease can feel so hopeless when we aren’t getting the effective treatment we deserve.  We can do so much better than this.

What I wish my doctor understood about endometriosis. Via @bcnutritionista

Image: Pixabay

We’re Not Drug Addicts and it’s Not in Our Heads

It is very common experience among endo patients that doctors have treated them like either drug addicts or somatizers.  This is particularly common in the ER and among gynecologists who are frustrated that their treatment plan isn’t working, but unwilling to admit they are over their heads and refer patients to an endometriosis specialist with greater expertise.

 

Don’t blame the patient for your failed treatment plan.  We fully understand that endometriosis is complex, and certainly aren’t expecting any kind of magical cure or chronic illness maintenance in the ER.  But please believe us when we say we are in pain and advocate for our own best interests including expert surgical care.  Pelvic pain and endometriosis are not mental illnesses, character flaws, or any other sort of psychogenic problem.

 

Effective Treatment Exists

It is pretty obvious that the status quo of endometriosis treatment (hormones, endless ablation surgeries, hysterectomy, or “just waiting for menopause”) does not work.  So why do we keep desperately clinging onto irrational or outdated theories and treatments that are not effective and often cause other serious side effects?

 

Expert excision surgery has been shown time and time again that it is by far the most effective treatment for endometriosis, permanently improving both pain and fertility in the majority of patients.  Furthermore, an integrative approach utilizing nutrition, pelvic floor physical therapy, and other complementary treatments in addition to expert excision is even more effective.

What I wish my doctor understood about endometriosis. Via @bcnutritionista

Image: Pixabay

I Expect You to Have a Comprehensive Plan and Be Willing to Collaborate with Me.

If you want my confidence in you as a physician, you need to be willing to work with me to create a comprehensive plan.  Repeating the same old myths, ignoring what I am saying, regurgitating the same tired plan that hasn’t worked in ten years, pushing drugs you are affiliated with but have not disclosed to me, or anything that resembles paternalistic medicine simply is not going to result in a productive patient physician relationship.

 

I need a doctor who truly listens to and believes me, collaborate with me, and works with me to find a comprehensive plan (excision surgery, pain management, dietary therapy, pelvic floor physical therapy etc) that we can both feel good about.  This needs to be a team effort and I need you to respect where I am coming from and be on my side.

 

Furthermore, don’t be intimidated by patients who are up to date on the latest research and advocate for their own best interests.  We might be a lot a little jaded by years of not being heard or taken seriously by other doctors.  We don’t know you yet and fear that you will be like all of the other doctors who have treated us poorly and/or failed us.  This of course is not your fault, but listen non-defensively with interest and empathy and watch that “scary” patient quickly transform back into the sweet person that she is.

 

Listen, listen, listen.

 

Don’t Assume You Fixed Me if I Don’t Return

There is a common but pernicious misconception among health care professionals, believing that if a patient or client doesn’t return we must have “fixed” them.  Many times this is not the case unless verified with the patient.  It is a huge red flag that something is wrong in the way a practitioner communicates/listens to patients, their treatment plan, their exam (if applicable), or all of the above.

 

Personally speaking, I have never ghosted a physician who hears me, treats me with respect, believes me, is trustworthy, and wants to collaborate.  But if they are defensive, dismissive, rough, arrogant, or condescending?  I’ll probably let you know if I am unhappy (I am direct and feisty that way, INTJ that I am), but most will quietly walk out the door, share their poor experience in the vast social media patient community, and never come back.  Food for thought, which brings me to my next point…

 

It is OK to Admit You Don’t Know!

I want to scream this one a thousand times over.  I don’t think less of you as a doctor when you admit that you don’t know or are in over your head and refer me to another specialist with more experience and training.  Not only is there no shame in that, but I think it is admirable.  Really.  We’re all only human, after all.

 

But I take serious issue when you blame or dismiss me as a patient because your treatment plan didn’t work.  Physician ego is never more important than patient care.  Please have the humility and respect for me as a patient and my health to admit when maybe someone else would be able to help more than you are presently able and to make that expert referral.

 

The resounding theme here is to please hear us.  We need you, but we need to collaborate as a team rather than a stonewall, paternalistic, or ego-driven approach that only leads to unhappiness and frustration for everyone.

 

Thank you for being here.  We’re in this together.

 

What are the best and the worst physician experiences that you have had as a patient?  What do you want your past and present doctors to understand when it comes to treating endo patients?  Let me know in the comments below and on Facebook, Instagram, and Twitter.

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© 2016 Nutritionista.  Erin Luyendyk, RHN.  All rights reserved.

This article is intended as general educational material only and should not be considered medical or nutritional advice.  Please consult with your personal physician before implementing any nutrition, supplement or exercise program to ensure its safety and suitability for your specific individual situation. 

6 thoughts on “What I Wish Doctors Understood About Endometriosis

  1. summer

    Erin,

    I literally shed tears reading this paragraph.
    I have heard of many stories of women who have had a burst appendix, bowel obstruction, ovarian torsion and other such medical emergencies who didn’t initially seek medical care as they assumed it was “just” an endometriosis flare and were afraid that they would be humiliated in the ER yet again.  This should speak volumes.

    From June-December of last year I had 5 doctors dismiss, refuse to test for one of the basic medical conditions that I fit perfectly (small bowel obstruction) and firmly believed I had IBS-C even though my symptoms didn’t fit nor did the medicines or diet they prescribed for IBS-C made any changes in my state. I finally booked an appointment with my Endo excision specialist, it was a small bowel Endo nodule in a loop portion that was full thickness and folding the bowel on itself (partially obstructing).

    I mentioned the pain could be Endo related. Every one of those doctors disbelieved and “shut down” after this and stopped treating me or ruling anything else out. I felt humiliated, was told by my own family that I was making it up and was a hypochondriac because they doctor’s weren’t finding anything. I was even told by one doctor I had anxiety and that was causing my problems.

    After my excision surgery I went back to my GP and explained my surgery to her. I made a quick statement and asked her one question: “Doc my symptoms fit perfectly with small bowel obstruction. I only ever asked you to do a wide thorough search for the source of the pain and never asked for pain meds. Small bowel obstruction requires only a few simple x–rays with barium. Why didn’t you look at obstruction as a possibility?”

    She sunk in her stool and said, “Looking back now it makes perfect sense you had an obstruction. I don’t know, I can’t tell you why I gave up.” The words gave up was all I could hear. Her eyes and emotional crackling voice gave it all away for the truth. I suffered through 6 months of the most agonizing pain I have ever felt because my doctors didn’t want to listen when the potential answer was Endo, they didn’t know how to treat it, nor would they “get to do” the surgery if it was. I made it clear if this was Endo I would return to my excision specialist.

    As far as the anxiety goes, no kidding I had anxiety, not a one of five doctors would listen to my symptoms and continue to search for the source of the problem beyond IBS-C. Then my own family didn’t believe me. I had one person who believed me for those 6 months, my Endo excision specialist. I didn’t dare ask for any pain management because then they would for certain discredit and humiliate me more than I felt over the five months.

    The tears are flowing because this is perfectly accepted practice and care that some doctors “shut down” and refuse to do a thorough job of finding the source of pain or to rule out all relevant other conditions once we dear breath the word Endo. Where is the accountability of medical doctors for cases like mine? If I hadn’t booked that excision surgery on my own (and I even tried canceling the day before buying into I was making it up) who knows how long it would have been before it was too late for me??? I shed tears that I am not alone in suffering a total of six months in the most excruciating pain I had ever felt and I didn’t even ask for pain meds (when I clearly had every medically necessary reason to take them) because of the distrust that doctors place on patients for asking for them when I was already dismissed for mentioning Endo.

    Thank you for sharing! And, yes we do need to bridge the gap between the distrust of the doctor and Endo patient, we deserve better!

    Reply
  2. Nicole Jones

    I have been to so many doctors I have lost count. Two GPs, 4 Gynos, Allergy Specialist, a Urologist, Rheumatologist, I am about to see my second Gastroenterologist. I have also done chiropractics and acupuncture. I told five different doctors I was peeing blood before one of them actually tested me to prove it. Sure enough, it was true. Even going to a specialist after that I got, “it is just the endo. There is nothing we can do. Yes, we have had women lose a kidney to this disease, but I wouldn’t worry about yours.” I have now developed arthritis in my back and ankle. I complained about those for 2 years before anyone found it, pain and limping that went along with my Endo flares. I have lost complete faith in the medical field. I too have been in excruciating pain and have completely avoided going to the ER. One day it might be something else. One day it might actually be an emergency. I don’t know if I would seek help for fear of more of the same. At least the second GP I found listens. She is caring and compassionate. She will do what she can to help me, but it really isn’t her field. She gets as frustrated as I do when my Gyno tells me to go see her and refuses to see me. This is a gynecological issue! Time and time again I have been told that if I refuse to take Lupron, then I am choosing to be sick. We need better care! We need a cure!

    Reply
  3. Elizabeth

    Regarding your point “Don’t assume you fixed me if I don’t return”,
    I have started thinking that I should write a letter to the doctors that I stop going to. What if we all did this? Just to state that I am indeed still on my search to feel better, then stating why I chose not to return to him/her. Such as, “You focused on pregnancy as a solution when I stated no interest in that at this time.” (Not even getting into that not actually being a solution!). Who knows if it will ever be read, but they won’t know if we don’t tell them. I think when we stay silent (and our appointments are still paid for) we collaborate with a system that is not serving us.
    After a last urgent care visit where I received “drug seeker” treatment (I was in for a non-endo reason,did not need medication, & have very little medication in my history so I thought i wouldn’t have to deal with that, but I was wrong….once you’re labeled, you’re labeled…i had been in for a burst endometrioma 6 months earlier and received drugs), I wrote a letter to the physician. I didn’t follow the usual channels, I hand wrote it and dropped it off with the receptionist to give to her.

    Reply
  4. Megan

    This article hit home. I was diagnosed with endo in 2011 after years of hormone therapy a tubal pregnancy, and lupron. I was also diagnosed with pelvic congestion syndrome and seen a dr in madison. When i told him my diagnosis and showed him my massive surgery/health records he looked at me and said if you believe you have this disease you need to go elsewhere. This coming from a Learning hospital the University I was shocked. i went back to my original ob and he did a hysterectomy leaving my right ovary and cervix. I was pain free for a year and beginning last year I jave had numerous new symptoms and pain ranging all over my body in the spots that endo affects and yet again I begin my process of finding a dr been to 4 different specialist from GI to Pulmonology and urology. I am so fed up with drs I gave up.. I no longer visit drs and just grin and bear the pain.

    Reply
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