Some Wounds Don't Heal: Medical Trauma and the Impact on People with Endometriosis

Casey Berna, MSW, Endometriosis Advocate, and Person with Endometriosis. In addition to leading the endometriosis brigade to petition ACOG for better standards of care, Casey is a social worker working with patients with endometriosis and has the disease as well. She kicks off Endometriosis Summit's 2020 blog series with a discussion on trauma and endometriosis. In the all new Endo Summit Workshop, Casey will lead a unique social media activity to explore trauma, minimization, and endometriosis. She writes... 

When the term, “medical trauma” is used, it often refers to an unexpected, severe, and often life-threatening somatic occurrence that afflicts an individual’s physical being. Authors and mental health providers, Michelle Flaum and Scott E. Hall, work to broaden and redefine medical trauma and its implications, for both patients and providers, in their book, “Managing the Psychological Impact of Medical Trauma.” Looking through their astute multidisciplinary lens, it is clear that endometriosis patients experience multiple levels of medical trauma that often go unrecognized by their social support systems, their providers, and even by the patients themselves. 
 
An ectopic pregnancy, ovarian torsion, a painful pelvic exam, miscarriage, a failing kidney, or the dismissal from a provider are just some examples of the many ways that endometriosis patients can experience medical trauma. Flaum, who experienced significant trauma during the life-threatening birth of her child, simply defines a “medical trauma” as a medical situation that brings overwhelming stress to a patient. Flaum argues it is important for the definition to remain subjective, empowering the patient to decide when they have experienced a medical trauma for themselves. While patients who face institutionalized racism, have a history of other life traumas and stressors, preexisting mental health challenges, and/or have strained support systems, are more vulnerable to experiencing medical trauma, no one is immune from experiencing medical trauma and its devastating effects. 
 
Flaum defines three different levels of Medical Trauma. Level 1 trauma can happen during an anticipated medical intervention or routine appointment. Endometriosis patients who have significant anxiety seeing their gynecologist, or even other providers not associated with endometriosis-related care, often experience this level of trauma. Sharing one’s medical history with a new provider or even simply stepping into the waiting room of a doctor’s office can cause severe anxiety for some patients, especially endometriosis patients who have been historically dismissed by the medical community. Inserting a speculum and performing a pap smear is considered routine for most gynecologists and patients, but this can be excruciating for an endometriosis patient and feel deeply invasive on both a physical and emotional level. How a provider handles these situations can add to or lessen the trauma a patient may feel. Providers who run practices surrounding routine care can help alleviate medical trauma by being aware, and making staff aware, that seemingly benign, routine procedures and appointments can be triggering for any patient. Compassion and empathy from all staff, from the person answering the phones, to the provider themselves, can help lower anxiety in a patient. Staff should also be attuned to recognize symptoms of trauma and be prepared to refer patients to a mental health provider for additional support. 
 
Patients experience Level 2 trauma when diagnosed with a chronic or progressive disease that can severely alter a patient’s lifestyle or be life-threatening.  Endometriosis patients can live with this level of trauma, often for decades. Patients who also experience infertility and recurrent pregnancy loss will most likely face additional medical trauma. PTSD, anxiety, and depression can happen as a result of living with Level 2 trauma. Flaum also explains that patients can experience secondary crisis when living with a chronic and/or progressive disease. A patient’s education, vocation, relationships, and financial standing can all be significantly altered due to the impact of endometriosis. Flaum stresses that the most successful way of mitigating medical trauma, and its impact, is to treat every patient in a collaborative, multidisciplinary way. A team approach, in a center of excellence, that can provide resources for excision surgery, mental health support, pelvic floor therapy, fertility treatments, nutrition guidance, pain management, acupuncture, and more, would greatly benefit endometriosis patients and reduce the scope of medical trauma inflicted. Centers that do not have a multidisciplinary care team under one roof, but offer patients referrals to resources and recognize potential medical trauma, can also be an effective model of care. Unfortunately, for the majority of patients, this type of care is currently inaccessible, in part due to the lack of recognition of the complexity of endometriosis by the general medical community. Patients report that the substandard care they have endured has often led to significant and repeated medical traumas, which can include repeated ineffective surgeries, dismissal of symptoms, unnecessary removal of reproductive organs, infertility, and the prescription of life-altering drugs without true informed consent. 
 
Finally, Level 3 trauma happens when a life-threatening or life-altering event happens unexpectedly and requires significant and immediate intervention. Endometriosis is unusual in that in the hands of an inexperienced provider, a “routine” laparoscopic exploratory surgery can sometimes result in a patient waking up unexpectedly to having organs removed which were not anticipated, leading to significant medical trauma. While this may not happen to the majority of endometriosis patients, some patients have had a routine MRI or have gone to the emergency room and learned that due to endometriosis they have a catamenial pneumothorax, bowel obstruction, or their kidney has failed. Endometriosis patients are more at risk for ectopic pregnancies, which can be life-threatening. It should also be noted that often the level of pain that an endometriosis patient can face feels life-threatening and that pain in of itself is a medical trauma. The care patients receive for a Level 3 trauma most often happens in a hospital setting. Emergency room providers and gynecological staff have the opportunity to reduce the medical trauma a patient experiences through compassionate, educated care, while also providing further referrals and resources for patients. Flaum also argues that providers and staff who exhibit stress in front of the patient, have poor coping skills, and/or who may exhibit medical narcissism, with a failure to collaborate with other team members, can increase medical trauma for patients as opposed to deescalating trauma. 
 
Flaum states that there is a complex relationship between patient, diagnosis, procedures, medical providers, and the medical environment, with potential for medical trauma throughout. Endometriosis patients and advocates would argue that the lack of understanding of the disease from the greater medical community, along with the outdated standards of care which contribute to the medical trauma that patients endure, makes addressing medical trauma in endometriosis patients even more challenging. Continuing to fight for changes in standards of care, pushing for disease recognition and awareness, and promoting multidisciplinary, collaborative care so patients can have an abundance of resources to navigate such a complex disease, are the only ways that patients will see some relief from such a potentially traumatizing diagnosis. 
Tickets for the Endometriosis Summit go on sale on December 15  at https://www.eventbrite.com/e/the-endometriosis-summit-2020-tickets-84756086737?aff=ebdssbeac

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