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.
Nicole: Hi Carin, thanks for taking the time to connect with us. You obviously have an inspiring personal experience with chronic pain – can you talk a little about your own story, and how it led to the work you are now doing with Bridge for Pelvic Pain?
Carin: Thank you so much for the opportunity to share my personal experience with your team and with your readers. I have suffered from chronic pain since childhood in the form of chronic headaches, TMJ, and Irritable Bowel Syndrome (IBS). When I was 27 years old I was diagnosed with a chronic and painful bladder disease called Interstitial Cystitis (IC) and shortly after that I also developed chronic sexual pain. As you can imagine, the stigma and depression of dealing with pain in such an intimate part of my body, at such a young age was quite devastating. My prognosis from several doctors was to ‘learn to live with it’ while I was given a multitude of prescriptions for the pain, muscle spasms, as well as antidepressants. Personally I found the medications to barely mask the pain I was experiencing plus I had to deal with the side effects of the medication. I was determined to uncover another way to feel better as the alternative to take pain medications for the rest of my life was both depressing and painful on many levels. I figured that I had nothing to lose by trying an alternative route. I was very motivated to get my health and my life back.
My journey towards my health recovery took close to eight years* and encompassed utilizing an integrative approach including diet, acupuncture, natural antibiotics as well as healing my mind, and spirit through various avenues including counseling, meditation, and breath work. After eight long years of hard work, my symptoms of IC and chronic sexual pain diminished to a very manageable level and I decided it was time to ‘give back’ and share my journey, successes, and ideas for health recovery with the IC/chronic pelvic pain community. I created a website and blog (www.icpbssupport.com) to share my story as well as helpful resources, treatments, and integrative therapies.
I began to be contacted by chronic pelvic pain patients and doctors throughout the world which lead to interviewing chronic pelvic pain doctors throughout the United States and learning more about the pelvic floor and how our bodies process chronic pain. I also realized that surrounding myself with a positive team of doctors, family, friends and patients was a key to my health recovery. After about three years of interacting with patients and doctors through the support website I felt that it was important to create a nonprofit to integrate all that I had personally learned about chronic pelvic pain and recovery through an integrative approach. Because of my connections from the support website I was able to immediately begin collaborating with doctors, patients, and physical therapists who believed in our collective vision of starting a nonprofit focused on providing resources, education and hope for all of the chronic pelvic, sexual and genital pain conditions through an integrative approach. In January of 2014, Bridge for Pelvic Pain (a non-profit based in Colorado Springs, CO) was formed. Although we are incorporated in Colorado, we are able to reach chronic pelvic pain patients throughout the world through the Internet and social media through our website, Facebook chats, and other support and educational vehicles. It is truly the fulfillment of a dream that many of us had to serve the chronic pelvic, sexual, and genital pain community.
Carin and Dr. Robert Echenberg speaking at a Bridge for Pelvic Pain event
*(Please remember that we are all individuals and our road to chronic illness and recovery are therefore very different. Just because I chose to forego medications does not mean that I devalue their helpfulness nor do I suggest that everyone should choose the journey that I did. Please continue working with your health care provider, physical therapist, or other healthcare provider for your individualized care.)
Nicole: The vision statement for Bridge for Pelvic Pain is ‘To bring hope, resources and knowledge to the pelvic, genital, and sexual pain community worldwide.’ Obviously that’s incredible important for millions who suffer from these conditions – how are you going about doing that?
Carin: We approach everything that we are involved with - whether it is an educational seminar, blog post, or an outreach event - with a message of hope. When we connect patients with doctors, integrative treatments, research or a patient story with a message of hope we believe we build a stronger connection to the chronic pelvic pain community. For example, there is hope when a patient’s story of their chronic pain experience is believed by their doctors, family, and friends.
It is through collaboration with the entire chronic pelvic pain community of patients, caregivers, doctors, physical therapists, counselors and researchers that the community is made stronger. Through supporting one another, sharing resources and education, and uncovering new ways to improve the patient experience, we are continually shaped by these experiences and are better able to help the community now and into the future. We are excited by all of the efforts and passion that many people apply towards better serving the chronic pelvic pain community.
There are numerous products, services, and integrative treatments for chronic pelvic pain that simply were not in existence even a few years ago. This is another reason why we are filled with hope and why we continue educating the community about these conditions which are very prevalent in our society. We also work hard at educating the medical community about these conditions which is another step towards shortening diagnosis time and improving the patient experience.
Check out Part 2 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.