The issue is pelvic organ prolapse (POP). While it’s been on medical record for nearly 4,000 years, there’s little awareness among the public about POP, and according to Sherrie Palm, executive director of the Association for Pelvic Organ Prolapse Support (APOPS), there’s little training among clinicians or screening for the condition.
POP occurs when pelvic floor muscles weaken and one or more organs shift out of their normal positions into the vaginal canal. There are five types of POP: bladder (cystocele), intestines (enterocele), rectum (rectocele), uterus (uterine), and vagina (vaginal vault). The two leading causes of POP are vaginal childbirth and menopause. Come to think of it, don’t lots of women give birth or go through menopause? Why don’t we all know about POP?
Breaking the Silence
That’s exactly what Sherrie Palm thought when she was diagnosed in 2008. “Why don’t I know about this?”
The silence around the issue comes at least in part from the fact that POP symptoms can feel embarrassing. They include pressure and pain, urinary incontinence, urine retention, fecal incontinence, chronic constipation, painful intercourse, lack of sexual sensation, coital incontinence (leakage of urine or stool during intimacy). Not exactly dinner conversation.
Whether embarrassing or not, POP became Palm’s reality, and it turned out she wanted to talk about it. “I find it ridiculous that POP is shrouded in silence. It is health—nothing more, nothing less,” she says. “Why not help women feel empowered with choices about their bodies rather than alone and ashamed?”
“Millions of women suffer in silence with symptoms they don’t understand, often for years, sometimes decades, before they’re diagnosed. There’s no POP screening during routine pelvic exams, which is ridiculous considering childbirth is the number one cause and the number two cause is menopause (there are many other causes as well). Also diagnostic clinicians (primary care and gynecology) are poorly educated on POP, which is absurd considering the prevalence is estimated to be half the female population,” says Palm. “Someone has to generate change.”
And that’s exactly what she did.
Getting Help from NPC
“I started my advocacy path by writing a book about POP. Then, about 15 months into marketing my first edition, the light bulb came on. In order to effectively help women, I should found a nonprofit. The realization shifted my entire path.”
Enter the Nonprofit Center of Milwaukee (NPC). When Sherrie shifted her focus from a book to full-fledged advocacy through a nonprofit, she started using the classes and consulting available from NPC.
“Working with NPC built the bricks that built the walls of our structure,” she reflects. Palm recruited Susanne Vella, training coordinator at NPC, to be on her board. “She’s an amazing resource with all kinds of information based on her many years in the sector combined with her amazing compassionate heart,” says Palm.
APOPS is staffed by eight volunteers who spend part of their time managing a closed Facebook support group. The organization also has a volunteer intern and several other volunteers who assist at events. APOPS has become a voice being heard in every state and around the world. They’ve moved from being the dream of a recently diagnosed patient to a global voice empowering women with POP and equipping medical professionals to better serve them.
The Networking Effect
While she values the classes she’s taken at NPC—first on nonprofit startup, governance, and management, then clarifying the vision, communicating value to potential supporters, and building a board—Palm says the greatest value has been “the networking effect”: “You not only learn from the teachers (all experts in their topics), but also from every attendee. For me, being connected to other women’s health organizations is of value.”
APOPS will hold its second walkathon, STIGMA#STRIDE, on June 5 at Greenfield Park. The inaugural APOPS 2016 Women’s Pelvic Health Congress will occur this August in Milwaukee and in Manchester, England. The event, which provides a POP curriculum for diagnostic clinicians, is planned to occur annually both in the US and abroad. “We are every woman,” says Palm about POP. The condition can occur from late teens through mid-80s and affects every physical, emotional, social, sexual, financial, educational, racial, nationality, employment, or fitness demographic you can think of.
As the silence is slowly broken, a loving, supportive tribe of women in APOPS waits for us, acting as a gentle wave of empowerment.