by Nancy Petersen, RN, Founder of Nancy’s Nook on Facebook.
When endometriosis patients find Nancy’s Nook, they are often without hope, at the end of their rope, having been denied confirmation of the causes of their pain. For many the journey has been years long, resulting in multiple surgical and medical treatment failures. The repeated failures have led their doctors and their support systems to begin to doubt them as having legitimate pain.
In her book on endometriosis, Kate Weinstein observes that 75% of endometriosis patients have been dismissed as neurotic.
The emotional load of years of misdiagnosis, ineffective treatments, and psychological dismissals leaves a significant impact on patients, their families, and potential referral sources. We see families abandoning patients as they grow disillusioned on the failure of patients to get better or find a resolution. Physicians behind treatment failures often lose interest as the patient continues to experience pain and disability and despair. When that happens, the family often withdraws further.
We have created a perfect storm of disbelief of patients experience when the very experience has much to teach us about the actual profile of endometriosis, its symptoms, and its impact. So patients are now effectively hogtied emotionally when seeking additional assistance to get to the bottom of their pain/disability.
Once patients understand their disease, understand treatment failures and how to move ahead, how to find more astute care for their pelvic pain, the relief is palpable. They now have hope, where before it had been effectively destroyed. Once their pain, symptoms, and past experiences are validated and noted to be off the mark, their relief is palpable. They become almost effusive about the experiences in the hands of those who have greater knowledge and skill in endometriosis care. The validation of the failures they have been through and that those failures are not about them, releases an emotional flood gate.
Peritoneal quality pain causes bloating, pallor, nausea, bowel dysfunction, restlessness, anxiety (due to the severity of the pain), intense pain, and in any other condition results in immediate attention, evaluation, and treatment. In patients with endometriosis, it becomes a dismissive assessment, “oh it’s just period-related”. So again doctors dismiss what the patient is experiencing and step away if they do not know how to properly intervene. This not only leaves the patient in pain but further damages the patient’s psyche. The history of severe, inadequately treated pain, coupled with repeated disbelief often moving to outright psychological dismissal creates a depressive hole it is often difficult for patients to free themselves from alone.
So when education and appropriate medical intervention begin to happen, patients undergo a plethora of reactions, often wondering why this has not happened before. They do not understand that the industry lacks a great deal in terms of understanding of endometriosis and appropriate treatments. Gradually we are seeing a shift to recognize much of what has been standard fare is off the mark.
Almost all patients in Nancy’s Nook have tried pretty much everything that gynecology has to offer except EXPERT excision surgery. As more and more physicians gain MIGS (Minimally Invasive Gynecologic Surgery) skills as well as endo specific education to apply to their patients, I have hope for the future that we will stop inappropriate removal of organs, stop recommending pregnancy as treatment, stop running patients through medical suppression (particularly that group of GnRH drugs that have permanent damaging side effects never revealed to doctors and patients), and truly pay attention to key factors in successful treatment of endometriosis and or identification of other pelvic pain generators and treatment plans for each.
When patients are caught up in the conundrum of ineffective care, psychological dismissal, and abandonment by family, friends and medical providers, emotional support becomes important. When their experiences are validated by more knowledgeable caregivers, the emotion floods to the surface. The restoration of hope as well leads to elation and joy. Education- understanding the failures, the dismissals are more about inadequate science guiding general care and not about them – can be helpful in their journey.
It goes a long way to righting the wrongs.