Welcome to our support group! As facilitators, the two of us have many years of living with, and caring for, the symptoms of Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). We have seen a lot of changes over the years in the care and treatment of IC/BPS, and it is more hopeful than ever. KWICS is over 80 members strong and growing. We consider ourselves to be a helpful and friendly group, and new members are always welcome! Although we do not offer medical advice, it continues to be our pleasure to provide support in areas where we are able. Please know that you are certainly not alone in your journey. It is our aim to provide current information, as well as to help individuals in a compassionate and non-judgmental approach as they work toward better health. Our support is largely online and via telephone, and we enjoy a yearly in-person meeting with a guest speaker during the warmer seasons.
Our first and most urgent question from newcomers continues to be: “Where can I find a qualified urologist?” Here is where things get tricky because we just do not have ‘one answer’ to this common question. However, we can ask our members in your area if they have a suggestion and if so, we can pass this information on to you. We believe that while it is important for a urologist to rule out other medical conditions, our long-standing experiences have led to an understanding that a multidisciplinary approach to treatment is more often required and this is also substantiated by research.
Researchers continue to investigate why IC/BPS symptoms can vary from patient to patient. Many believe that there may be additional subtypes, called “phenotypes.” This also helps to explain why there is such disparity in how patients respond to treatments. One can see the importance in uncovering the dominant phenotype for getting the correct treatment for your symptoms. As you continue to receive medical guidance, support and to educate yourself, you will find the treatment plan that best suits your body’s needs. Typically this may involve diet, lifestyle changes, exercise, supplements and/or medication, and our biggest tool in our toolkit of course, is Physical Therapy. Read on!
What we do recommend universally is that if you educate yourself (you can read on our website links) about Pelvic Floor Dysfunction commonly called PFD. It is now known that the overwhelming majority of IC/BPS patients (approximately 75-85%) suffer from PFD, but the good news is that this can be diagnosed and treatment begun quickly. We have contact information for trained Pelvic Health Physiotherapists on our website and we are available to answer any questions you may have to the best of our ability. Do not overlook what may be the most substantial piece to your health puzzle and do get yourself checked by a properly trained Physical Therapist for PFD!
We write and speak of what we know to be true for us. When new information becomes available some discernment is required to utilize our experience to your advantage and apply it to your needs and your personal situation. This is a complicated syndrome but we remain undaunted by that and will continue to search for the knowledge that will eventually lead to all our future health and happiness without this disease.
- Ann & Gail