Welcome to KWICS! As facilitators, the two of us have a combined 50 years of living with the symptoms of Interstitial Cystitis (IC). We have seen a lot of changes over the years in the care and treatment of IC, and it is more hopeful than ever. KWICS is over 70 members strong and constantly growing. Although we do not offer medical advice, it continues to be our pleasure to provide support in areas where we are able.
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 know the answer. The best we can do is to ask our members in your area if they have a suggestion but of course this does not guarantee you will find a qualified urologist. 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. Unfortunately, IC is not a well-understood disease and there is no magic bullet for treatment. What works for one IC patient does not for another; we are all unique in this matter.
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 patients suffer from PFD, but the good news is that this can be diagnosed and treatment begun fairly 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.
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 & Kathy