If there is one thing I hear from fellow endometriosis patients if I hear anything at all is that they are screaming that their doctors don’t listen to them. I think there are many reasons why doctors don’t listen to endo patients, some of which are conscious and others which are not.
Can I be blunt and raw?
Doctors are my abusive boyfriend that I am forced to encounter and interact with again and again. Gaslighting. Disbelief. Patronizing. Verbal abuse. Hostility. Fragility. Violation. Anger. Control. Callousness. Humiliation. Shame. Blame. Bruises. Pain. Punishment.
Suffering. Torment. Powerless.
Docs, are you paying attention yet? Our most toxic and unfulfilling relationship is with you.
Stepping into a medical clinic or hospital I brace myself for the inevitable fight to be heard, taken seriously, and treated appropriately. 98% of the time I leave feeling even worse; violated, hopeless, and more even misunderstood than when I arrived. And while this problem isn’t only limited to those of us with endometriosis, it is one that most women can attest to experiencing.
How hard do we have to fight before we are heard? How sick do we have to be in order to prove that we are as sick as men before receiving appropriate care? Why is the most common response to women in pain is to ignore what we are saying, pat us on the head, and prescribe some combination of antidepressants, birth control pills, and anxiety meds?
Am I the only one who can see how royally fucked up this is?
Attachment to Old Patterns and Belief Systems
It it so easy to get stuck in old patterns, belief systems, and ways of being. I think there are several old belief systems at play when it comes to doctors not hearing endometriosis patients and the inevitable communication breakdown that results. When patients don’t feel heard, the result is that they think you don’t care and/or are an out of touch, unmitigated egotistical ass. Most likely neither of these sentiments are true, but that is how you are perceived.
The first issue I think is that there is a serious misogyny problem in medicine. We don’t want to admit it, but it is the unaddressed elephant in the room. In the vast majority of practitioners I don’t believe it is conscious, but the belief on some level that women are hysterics and prone to being over emotional is there in the collective subconscious. Studies have validated this egregious bias against women and that our pain is often wrongly dismisses by medical professional as neurotic and exaggerated.
You will be hard pressed to find an endometriosis patient, or any female thyroid, migraine, fibromyalgia, inflammatory bowel disease, chronic fatigue syndrome, anemia, or lyme disease patient (among countless other invisible illnesses) who has not personally experienced this bias many times. Sadly it is not the exception when it comes to medical care, and thus, why many believe that doctors don’t listen.
I happen to think that this unwillingness to believe female pain is strongly connected to other unconscionable and dishonest practices in medicine, such as medical students performing pelvic exams on anaesthetized women without their consent. Did you know about this barbaric practice? Are you outraged yet?
Specifically regarding endometriosis, doctors are still so attached to Sampson’s theory of retrograde menstruation as being the cause of endometriosis despite the overwhelming evidence that it simply is not the case.
Why do I think they are so stubbornly attached to a illogical theory of origin despite the fact that it has more holes than a pair of fishnet stockings? It’s easier to blame the disease when their ineffective treatment does not work instead of admitting they lack the knowledge and skills necessary to help the patient.
Ladies and Gentleman, Ego has Entered the Building!
Aside from the unwillingness to learn and adapt to new skills and information, I think physician ego is another big problem. Docs, I get that you have worked your asses off to get to where you are. I understand compassion fatigue, insurance headaches, impossible patient loads, extreme overwork, and corporate medical system pressures are very real and extraordinarily stressful problems for you. We are all only human. Even you.
If you hear anything in this piece and take it to heart, please stop pretending to be infallible. It is not only hurting your patients, but it is also hurting you.
If you cannot admit your limitations as a physician, that is a serious problem. If you cannot accept the possibility that you might have missed some disease during excision surgery or that a patient might have developed an adhesion or other complication from surgery that needs to be addressed, that is a serious problem. If you cannot admit that another surgeon, especially if they are from a different country might have greater skill and expertise that you, that is a serious problem. If you think you are the best surgeon on the planet because you have “watched all the videos”, that is a serious problem. There is a reason why YouTube does not grant medical degrees.
If you cannot admit you don’t know, that is a serious problem. If you blacklist a patient who has sought additional opinions because you have failed or refuse to help them, that is a serious problem. If you don’t have the ovaries or balls to see and treat a colleague’s patient who has not been helped by said colleague, that is a serious problem, and sadly rampant in Canada. If you blame the patient and label her a somatizer, central sensitizer, drug seeker, or any other dismissive label because you can’t admit that your treatment plan failed, that is a serious problem. If you won’t refer out to other more skilled specialists when you fail to help a patient, that is a serious problem.
I really hope you contemplate these issues and really take them to heart. The best interest of patients *always has* to be the priority, even when it involves admitting your professional and surgical limitations and eating a big ol’ slice of humble pie. Or a humble protein brownie. With strawberries. But I digress.
Can I share the paradoxical secret of all of this with you? Your patients will respect and revere you far more when you can admit your humanity and help them access better care with another doctor with greater expertise, skill, and experience. But the bottom line is that the health and well-being of your patients always has to be the priority. Not your ego or need for praise, titles, and recognition. That will also come from actually hearing your patients and doing the right thing.
Feeling Stuck and Unsure Where to Refer Patients
Honestly I really do feel for doctors in this situation, and I think it happens a lot. Going back to point number one, so many doctors are not up to speed on the modern concepts of endometriosis, let alone effective treatment or who provides it.
I think the first step is to dive deep into the research and really educate yourself. If you are looking for an unbiased, science-based advocacy group without any ties to Big Pharma, the Endometriosis Research Center is your best option. Some other great resources include Endopaedia, featuring the lifework of renowned endometriosis excision surgeon Dr. David Redwine, as is the Facebook discussion group Nancy’s Nook if you really want to learn the patient perspective.
The information is available to you if you choose to learn. It’s worth the extra effort.
Sigh. Big Pharma. I think it is so easy to get sucked into their marketing, recruitment, and fake support pages and believe that meds are the answer. The cold hard fact is that no medicine cures endometriosis. They might help reduce symptoms in the short term, but they do not eradicate the disease.
Doctors get sucked into it too. It’s so much easier to write a prescription or give an injection than to learn and dedicate your practice to meticulous excision surgery. Conflict of interest issues also arise when doctors are affiliated with drug companies and do not disclose that fact to their patients. We can’t trust you if you aren’t 100% honest and upfront with us. And when you keep pushing x medication after we have said no repeatedly, quite frankly you look like that desperate, creepy guy who keeps begging you to come home with him after a date when you have already declined. Regardless of the context, no means no.
Can we all just agree once and for all that a magic pill/shot/device is not the effective long term solution when it comes to endometriosis? Drug development in tremendously expensive, and of course drug companies are going to want to make a significant return on their investment. It makes fiscal sense for them to sell drugs that patients take long term to manage symptoms rather than to address and resolve the underlying cause. But is that business model really in the best interest of patients?
But we don’t want to simply manage symptoms on a superficial level. We want to get better. And we won’t as long as treatment options are focused on symptom management rather than the physical and complete removal of the disease itself.
It is time to heal this traumatic and toxic relationship. If not now, when?
What do you think?
What have your experiences been with doctors not listening to you? What steps have you taken or could take with your doctor in order to improve the relationship and feel heard? Doctors and other practitioners why do you think patients think doctors don’t listen? What are you willing to change so your patients feel heard and respected?
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