Sherrie Palm shared APOPS patient voice at the Medical Device Epidemiology (MDEpiNET) annual meeting September 7, 2018, Washington, DC.
Research frequently estimates that 1 in 2 women will experience pelvic organ prolapse (POP). There has been considerable media exposure related to mesh complications, associated litigation, and FDA commentary. What has yet to surface is the substantial gap in women’s wellness screening related to POP, a common but highly closeted condition. A collaborative effort to address a massive gap in women’s wellness protocol is underway.
Childbirth and menopause, 2 of the most significant life events women experience, are the leading causes of pelvic organ prolapse. Pelvic exams are considered the gold standard in female wellness protocol, but women are seldom informed of or effectively screened for POP during those routine exams.
“No one ever told me anything about POP. I feel it is something OB/Gyns should be talking about with their female patients at their annual exams!”
~AL, 32, Culbertson, MT
The status quo for POP awareness and wellness screening hasn’t changed meaningfully since illumination via the Kahun Gynecological Papyrus circa 1835 B.C.E., nearly 4000 years ago. Discovery upon diagnosis is the norm for most women experiencing POP. As noted in the study Epidemiology and Outcome Assessment of Pelvic Organ Prolapse, POP has a 50% incidence when based upon vaginal examination. How is it possible women’s health protocol has overlooked this significant medical concern? The FDA based Medical Device Epidemiology Network (MDEpiNET), a coalition of government, healthcare, industry, and nonprofit agencies, is presently addressing this most significant deficit in women’s pelvic healthcare.
Throughout the female lifespan, women juggle to balance intimate, family, employment, fitness, and social facets of their lives. POP impacts women in most, and sometimes all of these facets.
“Pelvic organ prolapse is a highly prevalent condition which affects women of all ages, races and ethnicities. Those who suffer from the condition experience a general lack of awareness and understanding, and frankly a significant degree of disinformation about prolapse, potential personal impacts, and long-term consequences. The condition is shrouded in obscurity and impacted by a lack of dedicated focus in organized medicine.”
~Roger Dmochowski MD, MMHC, Associate Surgeon-in-Chief
Vanderbilt University Medical Center
What will it take to advance women’s pelvic health into the 21st century? Beyond childbirth and menopause, a multitude of lifestyle, behavioral, and co-existing health conditions compound risk of pelvic organ prolapse in women mid-teens through end of life, including heavy lifting, chronic constipation, chronic coughing, hysterectomy, genetics, hard foot-strike fitness activities such as marathon running or jogging, or any of several comorbid conditions including multiple sclerosis, Marfan, Ehlers Danlos Syndrome, spina bifida, or bladder exstrophy.
Women routinely suffer with the bladder, bowel, vaginal, and pelvic symptoms of POP. Despite progress in breast health comfort zone, most women feel uncomfortable talking out loud about stigmatizing POP symptoms such as incontinence, chronic constipation, vaginal tissue bulge, or pain with intimacy. Diagnostic clinicians don’t always ask the right questions during exams.
“I felt very dismissed and devalued when I was brushed off by my OB/Gyn because at 33 I was "too young" for surgery or pessaries, despite three grade 2 and 3 prolapses, but she would be willing to treat me if I was just 10 years older! She didn't even care enough to inquire about symptoms like incontinence or discomfort, because I was "too young" to be affected by POP.”
~TI, 34, Aguilar, CO
Women world-wide hide their pain and frustration. They struggle to navigate awkward conversations with loved ones, attempting to explain why they can’t or won’t engage in social activities. We must draw back the curtain veiling the biggest secret in women’s health. The quality of life impact of pelvic organ prolapse is far reaching, frustrating women physically, emotionally, socially, sexually, in fitness activities, and employment.
“The word 'vagina' is still so taboo in our culture, making it that much harder for women to be able to express concerns about their bodies and get the real help they need.”
~JK, 43, Belleville, IL
POP is likely the most common, least acknowledged, rarely discussed, stigmatizing condition impacting women en masse.
American Urogynecologic Society (AUGS) urogynecologists expressed imminent concerns in an editorial in the Female Pelvic Medicine & Reconstructive Surgery Journal September/October 2018 issue:
“The need for rigorous PFD (pelvic floor disorder) research has never been greater. US demographics trends suggest that the prevalence of PFD will substantially increase over the coming decades as will the number of women seeking care for PFD.”
~Catherine Bradley, MD, MSCE
Director of Urogynecology
Prof Ob-Gyn, Urology & Epidemiology University of Iowa
~Halina M. Zyczynski, MD,
Former President
American Urogynecologic Society
Millions of women with pelvic organ prolapse silently suffer with symptoms they don’t understand, too embarrassed to share them with their clinicians. They often can’t even express their concerns to their intimate partners. The stigma that has veiled pelvic organ prolapse for thousands of years can no longer be permitted to road-block women’s wellness.
The lack of knowledge and education in the entire medical community regarding POP highlights disregard for women’s health, which is simply unacceptable, sad, and concerning. “
~BG, 51. NY, NY
The traditional path of healthcare and healthcare policy is to theorize, develop, design, implement, test, and rewire medical treatment. MDEpiNET, a women’s pelvic health action network which includes government agencies FDA/CDRH, NIH, PCORI, AHRQ, and ORWH, physician societies AUGS, SUFU, and ACOG, and nonprofits APOPS, Fibroid Foundation, and CHIRAL, is making efforts to address deficits in women’s pelvic healthcare. When healthcare, research, policy, industry, and patient voice come together, best practices advance.
“The American College of Obstetricians and Gynecologists (ACOG) recognizes that pelvic organ prolapse (POP) is a significant health concern for our patients. Since obstetrician-gynecologists are often the first line of screening for this debilitating condition, ACOG supports efforts to address deficits in women’s pelvic health care. To that end, we are a proud partner in the Medical Device Epidemiology Network (MDEpiNET). By improving interoperability and clinical workflow and allowing clinicians to spend more time listening and counseling patients, we hope this work advances clinical practice guidance and improves our patients’ outcomes.”
~Barbara Levy, M.D., ACOG Vice President of Health Policy
It takes a village. Poised on the front lines of women’s health and wellness initiatives, efforts to address the needs of women with pelvic organ prolapse must take priority. It is imperative we increase pelvic organ prolapse awareness, advance best practices, and evolve diagnostic clinician curriculum to update pelvic exam screening protocol. Agencies must share vision and research openly and effectively. There is zero doubt, pelvic organ prolapse, undoubtedly the biggest secret in women’s health, will engender the next significant evolution in women’s health awareness, screening, practice, and policy.
As in every under-recognized aspect of health, we don’t know what we don’t know. Health research and policy play a significant role in society, providing evidence of healthcare trends, outcomes, risks, and costs. Global, systemic evolution of awareness, screening, treatment, and research for pelvic organ prolapse is not a maybe, it’s a must.
What will it take to advance women’s pelvic health into the 21st century? Women simply want to feel normal again.