The Rebirth of Women's Health Empowerment: Destigmatizing the Vagina

Prior to the 1970’s, you could not say the word breast out loud in casual conversation, on television, or on the radio without eliciting a shocked vocal or facial expression. You could not insert the word breast into print magazine or news articles. Today no one bats an eyelash at saying the word breast, reading the word breast, hearing the word breast, or seeing an image of a breast. We eradicated breast stigma by creating a comfort zone, talking aloud about breast health.

How is it possible society still struggles with the vagina, and what can we do to overcome that barrier in 2022? By what means can women become aware of vaginal health conditions if we will not talk about them openly?

WITHIN ROUTINE WOMEN’S WELLNESS CHECKS, POP REMAINS ROUTINELY IGNORED, UNACKNOWLEDGED, AND UNDIAGNOSED UNTIL IN AN ADVANCED STAGE BECAUSE SYMPTOMS ARE PRESUMED TO BE WHAT COMES WITH “BEING A WOMAN” RATHER THAN INDICATORS OF A MEDICAL CONDITION.

Two of the most life-altering events women experience, childbirth and menopause, are the leading causes for pandemic prevalence of the shrouded vaginal health condition pelvic organ prolapse. There are 5 types of POP impacting the bladder, rectum, intestines, uterus, and the vagina. There are 4 grades of severity, and women typically experience 2-3 types of POP simultaneously. Women suffer in silence for years, sometimes decades, with symptoms they do not understand. Within routine women’s wellness checks, POP remains routinely ignored, unacknowledged, and undiagnosed until in an advanced stage because symptoms are presumed to be what comes with “being a woman” rather than indicators of a medical condition. While research is accessible validating POP prevalence as low as 3% and as high as 93%, a more commonly noted figure is 50%. Despite this, women are rarely informed of or screened for POP ahead of the curve. Discovery upon diagnosis is the status quo. The POP silence is unsettling. Shouldn't we talk about ALL women's health concerns comfortably, especially those most pervasive?

While we overcame breast health stigma and now openly discuss concerns, that was not always the case. Sheros from the past stepped forward to engender a more realistic understanding of breast health. During the breast cancer awareness transition between the 1950’s and the 1970’s prior to which breast health remained a highly stigmatized, unspoken health issue, women in positions of celebrity or political power made some noise, associating themselves with their breast health concerns. Because a few brave women in positions of influence were willing to share their stories, breast health awareness advanced and eradicated the shroud of stigma of what had formerly been considered off the table erogenous dialogue.

Breast cancer advocate Terese Lasser, Founder of Reach to Recovery, diagnosed with breast cancer in 1952 at the age of 48, was hospitalized for a quick biopsy, and woke up having had a radical mastectomy. At that time there were no breast cancer support structures, so in 1953 Lasser founded a program to address unmet needs and breast health stigma. Despite Lasser’s valiant efforts, breast health awareness did not blossom for another 20 years.

Babette Rosmond, author of The Invisible Worm, challenged assumptions of surgeons treating women with breast cancer. In the 1970s Rosmond was an early activist against conventional breast cancer treatments. She rejected the idea of a radical mastectomy which includes removal of the entire breast as well as surrounding tissue, muscle, and lymph nodes. Refusing to cave into the insistence of a condescending physician who insisted she would be dead within 3 weeks, she sought an alternate path, choosing a simple mastectomy (lumpectomy) by George Crile, MD at Cleveland Clinic, controversial at that time but now considered the gold standard. Rosmond’s cancer did not reappear until the late 1990s. Rosmond recognized the value in her decision far beyond her own benefit and was noted as saying "I think what I did was the highest level of women's liberation.”

Actress Shirley Temple Black shared her story in McCall’s magazine in 1973 after being diagnosed with and treated for breast cancer at the age of 44. Shirley felt strongly that women should be given the opportunity to consent to such an invasive “amputation,” telling McCall’s magazine, “The doctor makes the incision, but I make the decision.”

Former First Lady Betty Ford revealed her breast cancer after being diagnosed when she accompanied a friend having a breast health exam and at the friend’s encouragement, chose to have an exam as well. Her decision to share her diagnosis via a 1974 televised press conference was a significant catalyst in breast cancer awareness.

NBC news correspondent Betty Rollin authored First, You Cry about her breast health experiences. Initially diagnosed with breast cancer in 1975 as well as in 1984, Rollin discussed her cancer openly, and shared her story in her book in an effort to increase awareness. The book was later made into a television movie which further helped destigmatize breast cancer.

And it was not women alone who acknowledged that breast stigma was excessive. A CNN Business article written by Brian Stelter November 19, 2015 shared the sentiments of George Merlis, former Executive Producer of ABC’s Good Morning America. In 1975, GMA exploded onto the morning news scene with a unique format, focusing on information women were interested in watching rather than hard core news alone. Citing the article and confirmed by Merlis, “the producers had to fight ABC's standards and practices department from time to time. The first time "GMA" tried a segment on breast feeding, the censors did not want the word "breast" said aloud. Merlis stated, "they relented when I suggested a whole range of saltier substitutes".

The silence around breast health disintegrated due to the actions of these brave individuals who chose to talk aloud about breast health during a time when breasts were considered an unmentionable topic. Their voices increased awareness of women’s wellness and engendered a new era in women’s health empowerment. Given the pandemic prevalence of POP, I question the lack of sound bites from today’s influential women in positions of visibility, many of whom have undoubtedly experienced pelvic organ prolapse. Despite the unsettling lack of open acknowledgement for the benefit of womankind, their voices could and should usher in the next significant revolution in women’s health empowerment.

BEST PRACTICE IS HARDLY BEST PRACTICE WHEN CONDITIONS OF VAST PREVALENCE ARE NEITHER ACKNOWLEDGED NOR APPROPRIATELY ADDRESSED.

The reality is women all too frequently suffer in silence with vaginal health issues that impact both physical health and emotional self-image. Screening for highly prevalent vaginal health conditions such as POP falls far short in standardized women’s health protocol. Best practice is hardly best practice when conditions of vast prevalence are neither acknowledged nor appropriately addressed. While stellar efforts were made by women from the past to destigmatize aspects of feminine wellness, the ball has been dropped in the vaginal health space. And despite progress within coordinated, comprehensive women’s healthcare, a significant practice gap remains. How is it possible 50 years past the efforts of amazingly brave women sharing very personal stories about intimate aspects of their bodies, that progression in women’s wellness hit the wall? And when and how can we fast-track much needed policy modifications?

Healthcare should undoubtedly be preventative, proactive, accessible, and evidence based. Evolving care models to overcome the current shortfall in the remaining stigmatized vaginal health care zone are critical. Childbirth and menopause, two of the most life-altering events women experience, affect the majority of the female sector at some point within a women’s life cycle. Women experiencing pelvic organ prolapse feel dismissed. A common question that comes up in a patient support forum for pelvic organ prolapse is “why wasn’t I informed of or screened for pelvic organ prolapse sooner?” When I asked women with POP in that support forum to share in one word how POP makes them feel, their fingers hit the keyboard fast and hard:

Defective, frustrated, isolated, stunned, alone, shocked, broken, embarrassed, weird, handicapped, sloppy, damaged, freaky, limited, imprisoned, uncomfortable, disgusting, empty, violated, disabled, fearful, vacant, wasted, lonely, gross, weak, droopy, destroyed, limited, ruined, depressed, solitary, hopeless, scared, old, ashamed, pained, worried, drained, misguided, betrayed, forsaken, angry, defeated, cheated, demoralized, deformed, suicidal, useless, failure, robbed, gross, grieving, afraid, cautious, nervous, vulnerable, limited, devastated, weird, forlorn, abnormal, helpless, silenced, guarded, invisible, terrified, hindered, unlovable, broken, repulsive, ashamed, hurting, imprisoned, marginalized, unfeminine.

It is imperative we ensure that medical disciplines of all specialties addressing basic women’s vaginal wellness are prepared to provide baseline POP screening to address needs as women flow through life transitions.

It is critical policymakers, clinical leaders, visionary entrepreneurs, and investors close gaps and overcome barriers in vaginal and intimate wellness which remain highly stigmatized. Patient voice has a significant role to play as well. All sectors engaged in the POP arena should encourage open dialogue to break down barriers and fuel the revolution in vaginal health. We must disrupt women’s healthcare due process. We certainly should celebrate the advances and changing societal perceptions in women’s health that have occurred in prior generations, but it is also imperative we remain cognizant and at times critical of stagnation.

ADVOCATES, HEALTH SYSTEMS, GOVERNMENTS, AND MOST IMPORTANTLY WOMEN MUST PUBLICLY ACKNOWLEDGE STIGMATIZED HEALTH CONDITIONS TO AFFECT CHANGE.

The power of community will override the silence. The resilience of women openly sharing information about vaginal health will bring it to the forefront as it did breast health. Advocates, health systems, governments, and most importantly women must publicly acknowledge stigmatized health conditions to affect change.

~When we disregard nearly 4000 years of medical documentation referencing pelvic organ prolapse, we dismiss women’s health empowerment.

~When we chat about incontinence jokingly and simply slap a pad on it as though it is no big deal, we dismiss women’s health empowerment.

~When we block efforts to talk aloud about vaginal and intimate health in a respectful way, we dismiss women’s health empowerment.

And when we as women choose to not engage in open POP conversation, we demean the efforts of so many of our fore sisters who worked incredibly hard toward the evolution of women’s wellness and best practice. Vaginal health matters. Pelvic organ prolapse matters. I know; I have walked the walk.

Every Voice Matters.