We're so excited to be joined by Carin Willis, a tireless advocate for pelvic pain patients and the founder of Bridge for Pelvic Pain. She has overcome chronic pain in her personal life, and after finding some relief she's working to 'pay it forward,' connecting chronic pelvic pain and IC patients with resources that can help. We're excited to have her with us for a two-part interview about her personal healing journey and what she's doing for the pelvic pain community. If you missed it, check out Part 1.
Nicole: Are there any new initiatives you’re working on, or areas that you’re really excited about moving forward?
Carin: We are launching a chronic pelvic pain support group in Colorado Springs, CO in January. Along with the support group we will be launching an art therapy program to provide chronic pelvic pain patients with a venue for expressing how chronic pain affects them through various art mediums. Current research has found that art therapy, along with music, provides a profound avenue for healing on an emotional level from trauma, depression, and chronic pain. If you are a chronic pelvic pain patient who does not live in Colorado Springs we will soon be accepting chronic pelvic pain artist submissions to spread awareness about these conditions through various art forms. Since our inception we have been supported by chronic pelvic pain patient artists including an artist who created a poster for our first crowdfunding campaign and we currently have a chronic pelvic pain patient artist (Soula Mantalvanos) who sits on our Advisory Committee. (I personally found writing about my experience of chronic pelvic pain as well as writing poetry to be incredibly healing when my IC pain was at its worst.) It is exciting to support patients on an emotional level by tapping into their creative natures in order to stimulate emotional healing and acceptance of their chronic pain experience.
'Colorado Healing' by Endometriosis Patient and Artist Abby Procter
Nicole: What do you see as the biggest challenges that are currently preventing these patients from getting the care they deserve?
Carin: One of the biggest challenges for pelvic pain patients includes not always having access to integrative treatment modalities that may provide relief from some of their pain and symptoms. Integrative treatment modalities may include pelvic floor physical therapy, massage, counseling, acupuncture, and even stem cell therapy. Our work includes educating the medical community that integrative treatments can have a positive impact for the patient experience.
It is important to point out the challenge that both men and women can sometimes face is initially being believed that they have chronic pelvic pain. These conditions can be very devastating for the patient on both a physical and an emotional level since they effect a very intimate part of the body. Healthcare practitioners may not always be trained to ask about the pelvic (or sexual and genital) health of their patients. Also, it can be quite shameful and embarrassing for anyone suffering from chronic pelvic pain to seek help from their healthcare provider. Because of all of these factors, there can be a long time between on-set of pain and symptoms until a patient receives an official diagnosis of a chronic pelvic pain condition. (For example it used to take on average seven years for an Interstitial Cystitis (IC) patient to receive a diagnosis.)
Another important challenge may include the patient being told that the pain must be one of psychology instead of physiology (ie that the pain is ‘all in their head’) if the healthcare provider does not know about chronic pelvic pain conditions and cannot ‘see’ chronic pain through their normal diagnostic tools. When a patient with a history of not being believed or who has endured pain for a long period of time until their diagnosis finally finds a healthcare or physical therapist who knows and understands chronic pelvic pain, it can be quite a challenge for the patient to feel that their pain will be taken seriously.
Other challenges for the patient include the financial burden from integrative treatments costs which are often not covered by insurance. So even when they are working with a doctor or medical provider who embraces integrative treatments the patient may not be able to try them because of costs. Chronic pelvic pain patients living outside the U.S. have another entire set of challenges including living in countries with less research into chronic pelvic pain conditions, a smaller pool of doctors who treat them, as well as culturally some countries who deny the existence of chronic pelvic pain.
But there is hope because recently there has been an explosion of interest and research in the study of chronic pain especially in the areas of brain retraining, the cognitive feedback loop, as well as ways of lessening chronic pain processed by the central nervous system.
Nicole: Thanks so much for sharing your story and the awesome work you’re doing at Bridge for Pelvic Pain. If our readers wanted to support your organization and mission, how can they get involved?
Carin: Thanks again for the opportunity to share about some of the work that we do at Bridge for Pelvic Pain and thanks for all that you and your team are doing for chronic pelvic pain patients at PelvicSanity.
We have several ways that readers can support our mission and programs. We have volunteer opportunities, ways to connect with us (and of course doctors, PTs, and other chronic pelvic pain patients) through our website and social media pages, and we are always looking for hope-filled blog posts, poetry and/or chronic pelvic pain patient artwork to share with the community. We welcome anyone to check out other projects we are working on by going to the Bridge for Pelvic Pain website.
If you missed it, check out Part 1 of our interview with Carin, or visit the website of her nonprofit organization, Bridge for Pelvic Pain, to learn more!
Dr. Nicole Cozean is the founder of PelvicSanity physical therapy, Orange County's premier pelvic floor physical therapy clinic. One of only 270 PTs to be board-certified in the pelvic floor, and the first PT to serve on the ICA Board of Directors, Nicole is the author of the acclaimed and best-selling book The Interstitial Cystitis Solution (2016). She is an adjunct professor at her alma mater, Chapman University. The PelvicSanity blog focuses on presenting practical, positive information to help patients beyond the walls of Nicole's clinic.