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:
How to plan and host a Pelvic Pain Awareness Event
Step One: decide what type of event and where
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.
Examples of previous events:
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.
The to do list:
- Choose a date in May.
- Speak with venue. Many bars are willing to donate up to 20% of proceeds to a charity for 1-2 hours: it brings people into the bar/restaurant, it shows support for the community and they write it off as a donation: (Provide them with www.pelvicpain.org and let them know we are a non-profit 501c3).
- Arrange speakers if planned.
- Make flyer with template provided (See attached).
- Entrance fee: Suggested donation (i.e., $25 food/drink value, charge $45) vs. donation from venue proceeds.
- Raffle option: Reach out to local and pelvic pain vendors for prizes (i.e., hot packs, massages, free spin class, restaurant gift certificate, etc.). Can have raffle tickets sold at the bar. (e.g. $6=1 ticket, $1=2 tickets, $20=5 tickets)
- If you have industry connections, you could ask for support for the event as well.
Getting the word out:
· 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.
Getting funds to IPPS:
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:
- Meet with practitioners in your area to educate them on chronic pelvic pain and build a referral network for patients.
- Host a community outreach program at your clinic, at a local gym, at a workout studio, or at a community center, to help make the general public more aware of what pelvic pain is, and what can be done about it. This way, you are better equipping patients to be able to advocate for themselves!
- Donate funds for research and educational programs at the International Pelvic Pain Society website (https://wjweis.association-service.org/securesite/ipps/donations.aspx).
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.
- Andrews J, Yunker A, Reynolds WS, Likis FE, et al. Noncyclic chronic pelvic pain therapies for women: comparative effectiveness. AHRQ Comparative Effectiveness Reviews, Rockville (MD), 2012.
- Baranowski AP, Lee J, Price C, Hughes J. Pelvic pain: a pathway for care developed for both men and women by the British Pain Society. Br J Anaesth. 2014;112(3):452–9.
- Ahangari A. Prevalence of chronic pelvic pain among women: an updated review. Pain Physician. 2014;17(2):E141–7.