Endometriosis is real. Why won’t doctors listen to us?
If doctors took us seriously, then gaslighting, misinformation, and cultural stigmas about menstruation wouldn’t continue to block millions of endometriosis patients from accessing timely and quality care.
I would not have survived much longer without the Center for Endometriosis Care (CEC) surgery this summer. I mean that literally; after waiting nearly 15 years for a diagnosis, having countless medical professionals tell me I was fine, yet still being in debilitating pain every single day, I was almost out of hope. No one can mentally cope with; fight off, or defeat a physical illness. Especially a systemic one that requires surgical treatment. Yet every doctor I went to for help told me to “push through it…period pain is normal.”
No endometriosis patient can “overcome” or “persevere” their way through living with endometriosis without pain relief, treatment options, and without hacing access to these resources. Surgery is the only thing that actually treats endometriosis, so when I logged onto Facebook and saw the below post (from one of only 200–300 endometriosis specialists in the entire world ), it reminded me just how much work we still have to do to get all endometriosis patients the care they so desperately need.
As he notes, this “trend” in gynecological research could not be more inaccurate, nor more harmful to millions of endometriosis patients around the world. Despite the millions of us suffering, as the CEC explains, more and more medical endometriosis research is emerging that perpetuates the already catastrophic amount of misinformation about endometriosis:
Despite being among the most common of diseases, persistent myths, misinformation and deficient health literacy continue to enshroud endometriosis — even by the most well-intentioned sources — often resulting in poor information systems and continued lack of effective care.
All of this misinformation has catastrophic real-world consequences. Endometriosis is a physical illness that damages your body. It’s not just a bad period. It’s a debilitating condition that requires expert excision surgery — surgery not covered by insurance and that only a handful of surgeons even know how to perform without causing further harm.. As the expert endometriosis specialists at the CEC put it:
Endometriosis is not a simplistic condition whereby normal uterine lining implants itself waywardly throughout the body like dandelions in a field with each period — yet unfortunately, this outdated, widely-touted notion continues to keep endometriosis mired needlessly in delayed diagnoses, hysterectomy, poor surgical treatment, ineffective medical suppressives and worst of all, a lack of hope. Fortunately — endometriosis is not a hopeless disease and quality treatments do exist.
These “quality treatments,” however, are not the medical treatments pushed by many researchers and doctors. Medically, these treatments are solely palliative; they just hide the internal damage, because, again, endometriosis is a physical illness that damages your body. It’s not just a bad period. It’s a debilitating condition that requires expert excision surgery — surgery not covered by insurance and that only a handful of surgeons even know how to perform without causing further harm.
The lack of access that the overwhelming majority of endometriosis are up against is a systemic failure — a failure caused by our for-profit health care, pharmaceutical, and insurance industries that fail to even see/validate our pain while raking in trillions of dollars in profit from patients’ pain and suffering. Pharmaceutical companies and insurance companies are backed up by the foremost professional organization for obstetrics & gynecological care here in the U.S.A., the American College of Obstetricians & Gynecologists (ACOG), much to my dismay. This gives them leway to tout their prohibitively expensive drugs as great alternatives to surgery — as medical “treatments” for endometriosis. Alas, as I explained already, there are no current medical endo treatments — these drugs are advertised as close to a cure yet they are solely palliative measures (often based on flawed or cherry-picked studies to oversell their benefits to already desperate patients willing to try anything to live a life without pain), and even worse, these drugs can often cause further harm, such as bone loss and permanent early menopause for patients in their twenties.
I tell folks that my first surgery was with a faux “specialist.” My language here is very intentional, just like the intentional lack of clinical protocols or health industry standards for what endometriosis is, let alone how it should be diagnosed or treated — this allows any gynecological surgeon to advertise themselves as endometriosis specialists. Patients have zero recourse to hold these fakes accountable after they either leave endometriosis behind or screw up our bodies even more than they were before surgery.
Patients like me suffer the consequences — Since there is no nationalized system for endometriosis experts (except the one that the few endometriosis experts started themselves recently to try and help patients get access to care not further harm @icarebetter, but that does not = the revamped clinical guidance we need to address this crisis) / no insurance code for endometriosis excision surgery / a hefty profit being made from palliative and often auite harmful medical “treatments” / a severe lack of access to care + informed consent once care is in reach, it’s no wonder that my diagnostic surgery ended up making me feel worse. The surgeon ended up missing endo in extra-pelvic locations and blamed my residual pain on me drinking coffee 🙄😒 #itwasendo
Before my surgery at the CEC this summer, I was still not 100% sure of my diagnosis. Well, according to my medical records, that is; I was sure. I had deduced that I likely had endometriosis 5 years ago, but every single doctor I saw for help failed to treat my pain, & most hurtful of all, most failed to even listen to me at all. A decade of pain could have been avoided if someone listened to me when I was 12/13 years old, if I would have been diagnosed before it spread all throughout my body for years — likely aided and abetted by the so-called “medical treatments” that never helped and often made me feel worse. Still after years of failed therapies, instead of suggesting a specialist for endometriosis evaluation — the logical next step for a patient who is still in severe pain after trying basically every birth control in existence — my doctors said variations of:
“I’ll prescribe you extra strength Aleve. There’s nothing else wrong and nothing to indicate a referral for surgery, that’s too extreme — you need to try and remember that some people just have painful periods. Let me refer you to a psychiatrist for this anxiety and a bit of obsession with endometriosis — It’s simply not indicated, so again, I highly encourage therapy, exercise, and general relaxation techniques.
What enrages me the most about all of this is that so much suffering could be prevented. Endometriosis doesn’t have to become a debilitating often totally disabling condition that derails your entire life. If endometriosis is expertly, excised early, it may never come back; it may stay away for decade(s); it may give a patient the chance to learn how to manage it before it starts being unmanageable.
Early disgnosis is crucial to managing endometriosis. Without it, a treatable condition turns into a chronic debilitating nightmare. But every gynecologist I went to for over a decade dismissed it. Most wouldn’t even entertain the idea that it could be endometriosis. I learned about endo via other patients on the Internet. I swear. I teach every new doctor I see about my illness. How abysmal is that? If I had been treated earlier my life would be better, that’s for sure. That’s a fact. And that’s a failure of our for-profit medical system — not me — yet like every endo patient, I was blamed for my own pain for over a decade…. It’s so unfair and wrong, and it’s already bad enough as it is, trust me. The last thing we need is a new research trend leading to folks being told endo is no longer treated via surgery…since surgery is the actual ONLY treatment and all….the implications of this lie could be catastrophic for a whole new endo generation. The thought of that absolutely breaks my heart.
If millions of endo patients worldwide isn’t enough evidence that hormones are garbage for endo + this is an urgent medical crisis, then what is? Maybe the research should come from and focus on us, endo patients, as the most credible sources of expertise on this illness? Just an idea, since every new endo research study I’ve read lately uses the fact that there’s no scientific “proof” of endo before laparoscopic surgery. We and our embodied wisdom from living with endometriosis are “proof” enough, I don’t care what your medical tests say.
We are living proof that surgery is necessary for endometriosis, yet most research barely even mentions us, never mind the fact that nearly every research study that even bothers to collect data from endo patients all come out with the same results — no matter the scale of the study — take a recent survey I did, as just one example. It was just for fun — non-IRB (for now perhaps lol who knows what life will be 🤷🏻♀️) — but I got 350 responses from endo patients that = the same conclusions as global peer-reviewed academic studies. I swear. In my survey, a staggering 92% said they had to wait 10+ years for a diagnosis — a diagnosis that we can only get via the surgery doctors are currently telling patients “no longer treats endo,” to push Orlissa on us instead, or Lupron, because bone loss and permanent early onset menopause in your 20/ reallyyyyyy helps patients out….
We are the evidence that proves the dire need for more concern about endometriosis. We are the evidence that surgery is the only thing that actually treats endo rather than being a bandaid for symptoms, while the endo continues to spread internally. Our lives are the evidence. Just because the medical field hasn’t come up with a diagnostic test to “prove” endo, that doesn’t mean it’s not there. Maybe research should focus on that + alleviating our excruciating pain, instead of giving another generation of patients false information that only furthers their suffering.