ENDOMETRIOSIS: THE SOUNDS OF SILENCE
Nancy Petersen
Co-founder of the first LAPEX program for the complete excision of endometriosis with David Redwine MD, Founder Nancy’s Nook Endometriosis Education, Facebook
Sounds of Silence
#endometriosisRX do we ask patients how they are doing? pain with sex, bm's, exercise, full bladder, pelvic exams, are they giving up on life, family outings, weddings, kids school activities? how their partnerships are holding up? Follow up is critical to improving lives.
The answer to these questions might begin to give us a view of just how ineffective all gynecology has to offer (short of expert excision) truly is. It might even lead us to question standard therapies, begin to believe patients, have more compassion toward their attempts to live with peritoneal quality pain. Dare we hope it would begin to shift treatment more rapidly expert excision by referring patients and or seeing more focus on endo in FMIGS programs as well as coaching and mentoring in the OR similar to what the Cleveland Clinic is doing for those wanting to do more effective work, or surgeons offering their work for review by experts in programs such as offered by icarebetter.com. Patients for the most part must guess if one more consult may be helpful after repeated treatment failures. And the industry is asleep at the switch blaming mental health or central sensitization for treatment failures as opposed to inadequate skills to manage disease well.
Further it might begin to shift care away from therapies that threaten our well being on down our life spans with risks from low estrogen states from medical and surgical suppression to heart, bone, chronic pain and cognitive damages. We see the angst for men who took Lupron and i assume other GnRH family drugs now showing signs of dementia......we are waiting still for concern for millions of women world wide who took these drugs, As I said: The Sounds of Silence
Patient Advocate @ Patient Voices Matter
3 年I am a National Patient Advocate for people, but find it very difficult to advocate for my own health. I have been dismissed over the past 35yrs with endometriosis and now that I have an excision specialist. I do not know what to say when they are asking about my history. I left my first visit realizing I did not speak out for myself and my care. I have only been told time and time again that the pain is normal part of being a women, and then offered up birth control pills that I can not take due to the mood swings they cause, and antidepressant. I am not depressed. I have anxiety and depression because no one listens and no one wants to find out the real issues. I know I am not alone. How do we advocate for ourselves after years of being told, "It's all in your head". Only after my daughter being dx with extensive endometriosis, and one week later my 1st cousin being dx with it as well, did I take action again. But my tongue is tied. I don't know what to say anymore.
Associate Professor, Film, TV & Media and Digital Studies, University of Michigan
3 年We need silence to be replaced by effective communication between patients and caregivers. This includes finding ways to manage and communicate effectively about comorbidities and how to communicate with multiple care providers about endo and other conditions that don't fit easily in one box.