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PATIENT PERSPECTIVES Pelvic Pain Patient Advocacy and Perspectives in Urological Disease Management
By: Hannah Srajer | Posted on: 01 May 2022
Introduction and Objectives
I am a member of Tight LippedTM (TL), a health advocacy organization that breaks the stigma and silence surrounding chronic pelvic pain, pelvic floor dysfunction (PFD) and chronic vulvovaginal conditions, which often cause urological symptoms. Research has shown the overlapping relationship between interstitial cystitis and vulvovaginal pain, and a large portion of our pelvic pain community has chronic urinary symptoms like urgency/frequency and burning with urination. I have been a chronic urology patient since 2012, and like most in the TL community, I saw multiple doctors (11) and suffered in silence for years until finally receiving the correct diagnosis of PFD and myofascial pelvic pain. These challenging years and hearing similar stories inspired me to change how these conditions are managed for all. I describe how our advocacy work and complementary pelvic floor interventions have helped our community find long-term care and relieve suffering. Our objectives are: 1. To encourage the urological community to screen patients for PFD and to work more closely with experts that treat pelvic conditions. 2. To show how patient advocacy helps patients take charge of their care and make appropriate lifestyle changes.
Methods
The TL community consists of 1,200 newsletter subscribers, 1,700 copies sold of our magazine, Opening Up and 4,000 social media followers. Our results are pulled from qualitative data, including content from 54 patient submissions to the magazine as well as the 200 written testimonials we received on a variety of social media platforms, iTunes® reviews and email from 2019-2021.
Results
1. In the TL magazine, pelvic floor physical therapy (PFPT) was the most patient-recommended and valued intervention for chronic urinary symptoms and other associated chronic pelvic pain symptoms. Submitters were most likely to mention PFPT as a therapy (85%), which they often received years after symptom onset; 94% reported that PFPT helped relieve symptoms. 2. From 200, our advocacy work helped 15% of our community seek professional care and advocate for themselves, 20% tell friends, family and providers about their symptoms, and 24% feel supported and seen as they navigated the medical and interpersonal landscape.
Conclusions
1. Urologists should screen and evaluate for PFD, refer appropriate patients to PFPT and learn from pelvic health experts. 2. Patient advocacy work like TL helps urology patients seek appropriate care and open up about their condition, pushing their treatment forward and relieving poor mental health associated with chronic urinary discomfort.
Tight Lipped continues to grow and serve our community of people living with chronic vulvovaginal pain. The Tight Lipped community now consists of 1,415 newsletter subscribers, 4,300 social media followers and 617 participants in TL events over the past year. Our podcast has been downloaded over 19,000 times by listeners in 78 countries. By the end of 2022 we will have hosted 5 medical education workshops, and this past year we have also launched a core team of 6 members to focus on our advocacy efforts. If you would like to hear more about our work or become involved in our advocacy, please contact me at hannahsrajer@tightlipped.org.