By: Kaitlyn Parrotte, PT, DPT, OCS, CFMT
Edited by: Amy Stein, DPT, BCB-PMD
According to the American College of Obstetricians and Gynecologists, chronic pelvic pain is described as a “noncyclical pain of at least 6 months’ duration that appears in locations such as the pelvis, anterior abdominal wall, lower back, or buttocks, and that is serious enough to cause disability or lead to medical care.”1 While the incidence and prevalence of chronic pelvic pain in men and women are reported in an inconsistent manner,2 some estimates compare its global prevalence to asthma (4.3%-8.6%), and one to the prevalence of low back pain (23.2 +/- 2.9%).3 Individuals who suffer from chronic pelvic ad abdominal pain also often present with other complicating factors such as depression, anxiety, poor sleep, difficulty with work, and/or relationship issues. Also, many people with chronic pain are commonly disabled by fear that activity will make things worse.2 Furthermore, pelvic pain is puzzling as it is a multisystem disorder, which includes sexual, bowel, urinary, gynecological, and musculoskeletal symptoms. It is challenging to determine a clear mechanism of pain with this diagnosis, and the term “pelvic pain” does not take into account the many signs and symptoms that may be occurring outside of the anatomical pelvis.2
Due to the complicated nature of this condition, there is a significant economic burden associated with management of it. In the United States, approximately $881.5 million was spent on chronic pelvic pain to cover the costs of direct healthcare. Additionally, approximately $2 billion was spent as an overall cost, which includes direct medical costs and indirect costs, such as those related to absenteeism from work.3 Besides economic burdens on individuals suffering from chronic abdominal and pelvic pain, there are also many challenges for the healthcare system to deal with. For instance, while a diagnosis of chronic pain in the United States typically yields more than 80% of physician referrals, it is estimated that only about 15% of individuals with chronic pelvic pain consult primary care providers, and only 40% of this group are referred to specialists for further investigation.3 Furthermore, if specialist care is involved in the management of chronic pelvic pain, it is often spread between multiple specialties, such as urology, gynecology, urogynecology, colorectal services, pain medicine, and even occasionally spinal services, rheumatology, and neurology. Thus, there is a risk that patients may be passed back and forth between different teams of the same speciality, or between different specialties, and may not receive consistent or effective care.2 In a nutshell: chronic abdomino-pelvic pain can be a debilitating condition that can have significant consequences on an individual’s physical, mental, economic, and social well-being.
Hopefully, if you were not already passionate about raising awareness of pelvic pain, you now have some insight as to why this cause is so important! Now the question lies, what can you do? How can you get involved?
One thing that you can take action is by hosting a local event to raise awareness and/or funds for research and educational programs that will promote more effective diagnosis and treatment for those suffering from abdomino-pelvic pain; these funds can be directly donated to IPPS! While hosting an event may seem overwhelming, it is actually easier than you think! Here is a guide to help you plan one:
Some ideas are to host a bar night, a get together at a coffee shop with a musician, a lecture in the form of grand rounds or a community education event in the name of pelvic pain awareness.
*bar night: easiest option: no planning other than location, an agreement from the bar to donate a portion of the proceeds, and getting people to come.
*more involved: plan a speaker night for pelvic pain awareness--could be yourself and/or other speakers. Location could be your office, coffee shop, hospital, or restaurant/bar.
1. Coffee shop example: Milwaukee’s 2017 event was held at a coffee shop. Healthcare providers were invited. When response was low, the event was opened up to patients, friends and family. There was a flyer posted in the clinic. Attendees ordered from the menu and the coffee shop donated 20% of what was ordered. Several patients wrote checks to IPPS who could not attend.
2. Speaker event example: “Girls Night Out” style event in Los Angeles: This event was held in a Speakeasy. Cocktails and hors d’ouvers were served. Entry fee was required, but the fee was offset quite a bit by corporate sponsors. There were approximately 50 people (due to room size) and we sold out. There were 4 speakers- 2 urogyns, 1 PT, and 1 sex therapist. It was designed as a community event, but other providers did purchase tickets to attend, too.
3. Bar night example: “Asked a friend to use part of his bar for non-profit event.” The bar gave reduced food prices and first drink free. 2 PT’s and 1 MD collected an entrance fee for food and drink tickets on the event planning website Eventbrite and at the door. All proceeds went to IPPS.
· Display the flyer in your clinic (see attached template)
· Contact Heather: firstname.lastname@example.org to get posted on IPPS Twitter, website, and Facebook accounts.
· Post on your social media. Let them know this is happening across the country.
· Do a press release with a local paper.
Send checks to IPPS Business office.
Questions: Contact Debbie Callif: email@example.com 262-240-1202 or Amy Stein: firstname.lastname@example.org 212-354-2622
If hosting an event is not a possibility, you can still contribute in many ways:
There are many ways to contribute! So circle the month of May in your calendars and consider how you can participate. Together, we can help bring chronic pelvic pain into the forefront of healthcare, to ensure individuals dealing with this condition are receiving consistent and effective care.
The NVA is requesting research proposals on (i) potential causes of vulvodynia and (ii) promising treatments for vulvodynia. Grant amounts range from $30,000 to $50,000. If you choose to submit a treatment study, we encourage you to collaborate with a clinical researcher at another institution to facilitate enrollment. Grants for treatment studies are typically close to $50,000, but we can increase that amount for multi-site studies.
If you are interested in applying, please send an email to Phyllis Mate (email@example.com) by Monday, August 16, 2021 that includes a brief (1-2 paragraph) summary of your proposed study's design and objectives. Once your information is submitted, you will received an email with a full application to complete and submit by Tuesday, October 12, 2021.
Applications must provide confirmation that all funds will be applied to direct research costs, not institutional costs. If you've previously applied and/or received grant support from the NVA, you are still eligible to apply. Summaries of studies that NVA has funded to date can be viewed on NVA's web site.