By Nancy Petersen
The Role of Emotional Support in Working with Endometriosis patients.
When patients find Nancy’s Nook, an online patient education board, they are often without hope, at the end of their rope, and have 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. Facchin et al. (2018) note that psychological distress with endometriosis comes from “a long pathway to diagnosis, bad doctor–patient relationships, poor physical health, lack of support” in addition to other factors.
At the Endometriosis Treatment Program at St. Charles Medical Center in Bend, Oregon (now closed), the patients we saw all had active painful endometriosis as established by independent board-certified pathologists. Yet, as I surveyed them, I found that, as noted by Kate Weinstein in her book on endometriosis, 75% of our patients too had been dismissed as neurotic. We still see large numbers of patients experiencing this in Nancy’s Nook, even more so with the advance of central sensitization as a cause of pain. While central sensitization is a valid consideration, we still see patients left with active disease. He, Liu, Zhang, and Guo (2010) notes that people with “endometriosis have generalized hyperalgesia, which was alleviated by surgery”. Is this a cart before the horse situation?
The emotional load of years of misdiagnosis, ineffective treatments, and psychological dismissals leaves a significant impact on patients, their families, and potential referral sources. After so many treatment failures, physicians often lose interest as the patient continues to experience pain, disability, and despair. When that happens, the patient’s family often grow disillusioned on the failure of patients to get better and can withdraw. The history of treatment failures impact the ability of patients to get further referrals. Their pain often gets blamed on central sensitization instead of remaining disease.
We have created a perfect storm of disbelief of the patient experience- when that very experience has so much to teach us about the actual profile of endometriosis, its symptoms, and its impact. At this point, patients can often grow hopeless about the chance for relief and may stop seeking additional assistance to get to the bottom of their pain/disability.
How can this be helped? In Nancy’s Nook, we try to help patients understand their disease, understand treatment failures, and how to move ahead. The aim is to provide hope that there is a way to find more astute care for their pelvic pain and to encourage them to use the tools provided to be able to seek the care they need. In short, the resources to continue to advocate for themselves. They now have hope, where before it had been effectively destroyed. Once they actually get into the hands of a qualified physician, their pain, symptoms, and past experiences are validated. This validation provides a palpable relief. The validation of the failures they have been through, and that those failures are not about them, releases an emotional flood gate.
I have said repeatedly over the years that endometriosis and sometimes other pelvic pathology creates peritoneal quality pain, something every medical student and nursing student on the planet has been taught to recognize. 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 we dismiss what the patient is experiencing and step away if we 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 creates a depressive hole that 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.
As the recognition continues, we have hope for the future. The Mayo Clinic at Rochester, MN, has recently stopped treating endometriosis with ablation, recognizing it is not an effective tool in eradicating disease or relieving pain. And another nationwide health care system is looking at limiting endometriosis diagnosis and treatment to fellowship-trained gyns in at least part of their system. We are hopeful this will begin to influence practice elsewhere as well. All 112,000 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 skills as well as endo specific education to apply to their patients, I have hope for the future. Hope that we will stop inappropriate removal of organs (AAGL recently has pointed out that normal ovaries and uteruses should be left in place), stop recommending pregnancy to treat, stop running patients through years of medical suppression, and truly pay attention to key factors in the successful treatment of endometriosis (as well as 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 providers, the relief is palpable and the emotion floods to the surface. The restoration of hope leads to elation and joy. We in Nook are not able to reach out with this kind of support due to the sheer volume of new patients we take in every week. But we hope that education, showing them that the failures and the dismissals are more about inadequate science guiding general care and not about them, can be helpful in their journey. We also often recommend counseling to help deal with the abandonment and anger that can be generated from a journey on the wrong path. But restoring hope, relieving pain, identifying all of the pain generators, and placing treatment plans go a long way to righting the wrongs.
References
He, W., Liu, X., Zhang, Y., & Guo, S. W. (2010). Generalized hyperalgesia in women with endometriosis and its resolution following a successful surgery. Reproductive Sciences, 17(12), 1099-1111. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/20923950
Facchin, F., Saita, E., Barbara, G., Dridi, D., & Vercellini, P. (2018). “Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health. Journal of health psychology, 23(4), 538-549. Retrieved from https://journals.sagepub.com/doi/abs/10.1177/1359105316688952