Bridging the Gap:Pelvic Organ Prolapse

Misconceptions

Sherrie PalmAssociation for Pelvic Organ Prolapse

Support

APOPS 2016 WOMEN’S PELVIC HEALTH CONGRESS

Disclosures: I have the following relevant financial relationship(s) in the products or services described, reviewed, evaluated or compared in this presentation.

Financial: Book royaltiesPelvic Organ Prolapse: The Silent Epidemic (book).

Nonfinancial —Founder/Executive Director: Association for Pelvic Organ Prolapse Support. Receives no compensation as Executive Director.

Clarify POP Reality vs Misconception:Understand women’s pelvic health

issues.Evolve clinician best practices.Assist millions of women navigating POP.

Pelvic Organ Prolapse

8 Years listening to women struggling:

Hiding in shame with symptoms.

Attempting to maintain ballast with:Family lives. Intimate relationships.Employment.

Women have no clue what is occurring in their bodies or what to do about it.

Women are talking! More dx training needed!

Bad News!

Dx clinicians providing routine pelvic exams are insufficiently educated to screen, treat, and/or refer.

Good News!

Women are ready to divulge & discuss symptoms their bodies display.

Enable patient voice & Evolve cliniciancurriculum to:

SUBSTANTIATE POP INCIDENCE. GENERATE EARLY DETECTION. CLARIFY MISCONCEPTIONS.

APOPS 2016 Women’s Pelvic Health CongressSherrie Palm, Founder

Shrouds POP in Silence

Association for Pelvic Organ Prolapse

Support

~Who we are.~What we do.~Global vision; evolution of POP directives.~Concerns that need to be addressed.~Changes coming in the pipeline.

The birth of APOPSDiscovery upon diagnosis.

Grade 3 cystocele, rectocele, enterocele.

Discovered how common POP is.

Getting POP info into the hands of women with 1st edition.

Founding a POP nonprofit to effectively reach and support women.

~APOPS was born September 2010~

APOPS is a 501(c)(3) US based advocacy agency with global arms.

Every US state.Every Canadian province.

42 countries.

Physical

Emotional

Social

Sexual

Fitness

Employment

~Generate POP Awareness ~Provide Guidance and Support

APOPS

Patients

Clinicians

Academia

Industry

Policy Makers

Research

Bridge all sectors in POP Arenafor betterment of POP understanding & evolution

APOPS Value: listening to and being voices of the women we serve.Women late teens to end of life in secure online forum.Women of all races, nationalities, income, employment, educational sectors.

No matter the backdrop, women express the same concerns.

Who are the women with POP?*Newly diagnosed or suspecting they have POP.

*Exploration of nonsurgical or surgical treatment for POP.*Pre/post POP surgery.*Mesh surgery, mesh anxiety, mesh complications.

What women hear and read about POP is heavily flavored with misconceptions.

How do women feel?

AngerAnxiety

Fear

What do women want?

THE FACTS!

Stomp Out Misconceptions

To generate change, imperative we educate the first line of defense

~Diagnostic Clinicians~

To the reality and misconceptions of POP.

GLOBAL EVOLUTION OF PELVIC ORGAN PROLAPSE HEALTH DIRECTIVES:

Magnifying Patient Voice to Illuminate Diagnostic Development

Survey measuring QOL & best practice misconceptions.August 2015 shared with social media, listserv, online support forum.

*139 women responded

Every decade 20-60, & over 60 represented

30-60 highest response rate

Responses from 8 countries

US, UK, Canada, Australia, Europe outside UK, Asia, New Zealand, and Africa

12 QOL misconceptions with n/a option.The 3 most frustrating POP misconceptions to patients were:

1.Clinicians indicating women don’t have to do anything about early stage POP, 55.4%.

2.Clinicians indicating POP is normal after childbirth, and there is no need to worry about it, 43.9%.

3.Clinicians not believing the POP symptoms patients say they experience, 41%.

Survey included the question-What frustrated you the most about the way your primary care clinician or gyne diagnosed you?

“The gyne said I had no prolapse even though it was visible at the vaginal entrance.”

“I went undiagnosed for over 10 years.”

“They (clinicians) think women under 20 can’t have POP; I’ve had it since the birth of my first child at 17.”

“My dr telling me my pain could not be from POP.”

“When I asked about running, my doctor said stick a tampon in and keep running.”

“My gyne is a good dr, but it’s surprising to me that he didn’t even suspect or check for prolapse when I had a lot of the classic symptoms.”

“She said I could try a pessary, and then it became evident she didn’t know how to fit one.”

“That it’s a rare diagnosis and only found in elderly women.”

“I was passed around to various clinicians and each had a different diagnosis.”

Secure online forum enables patient voice, critical to clarify misconceptions.

7 most common POP misconceptions are:

7. That POP is not painful.

Back or pelvic pain as well as pressure may occur.

6. Women under 20 can’t have POP.

EDS/POP intersect.

5. Athletic activities such as running or heavy lifting do not impact POP.

Runners need pessaries.

4. That POP is no big deal and women need to learn to live with it.

Impact to intimacy HUGE, coital incontinence, pain, embarrassment of tissue bulge.

3. Childbirth and menopause are the only significant causes of POP.

Heavy lifting, running/jogging, chronic constipation, coughing, DRA, genetics, hysterectomy, neuromuscular diseases.

2. POP is asymptomatic in early grade.

Women don’t know POP exists, dx clinicians poorly educated-we must connect the dots!

1. *3.3 million women in the US have pelvic organ prolapse.

Read/hear 50% of populace, no accurate data and won’t be until POP screening occurs during routine pelvic exams.

Change is coming!1. Establish broad spectrum awareness and

enable patient voice. 2. Evolve diagnostic clinician curriculum and clarify misconceptions.3. Establish dx clinician POP screening

protocol.

Pelvic organ prolapse is seldom life threatening,

but it is always life altering.Sherrie Palm

“Few will have the greatness to bend history itself, but each of us can work to change a small portion of events, and in the total of all those acts will be written the history of this generation. “ Robert Kennedy

Advance POP into the 21st Century Be

~Be the Change~