Or do you know someone who does, whether a woman or man.
I have included below a document prepared by Kay Zakariasen. She’s not a medical doctor although she and a urologist, Dr. Elizabeth Kavaler, worked on this and put the material together.
Ms. Zakariasen is a patient diagnosed with interstitial cystitis/painful bladder syndrome. Obviously then she has a personal interest in understanding the cause of the disease, the problems that arise because of it, what can be done to alleviate the problems and do the techniques proposed by many urologists work. As she states in her document:
“Since 2004, when Dr. Elizabeth Kavaler and I launched an online survey of patients diagnosedwith IC/PBS, www.cystitispatientsurvey.com, we have endeavored to understand two things: first, what is the nature of the treatment which the AUA suggests that urologists offer patients diagnosed with IC/PBS, exactly, and is this treatment safe and effective for patients, and second, what diagnoses and treatments have actually improved or cured symptoms?”
As you know I have a personal interest in the topic. As I wrote before:
“Let me give you an example that I am aware of. I know a woman in Windsor who suffered for several years from UTI infections and severe pelvic pain until she was referred by her family doctor to a urologist who undertook a cystoscopy procedure. She was diagnosed with interstitial cystitis. Medication was prescribed that made her extremely sick. Alternative procedures were tried that did nothing. A second urologist was seen and that doctor did not believe that the first diagnosis was correct. He too undertook a cystoscopy and suggested a different approach to relieve the pain. That failed as well.
Gynecologist were seen, other doctors in Windsor were seen and no one could come up with an answer other than continuing to take a small dosage of antibiotics as a preventative.
Finally a referral was made to a uro-gynecologist in London Ontario who might have the answer. Or might not. Unfortunately, it would take 2 1/2 years to see that doctor.
What a way to live. Two and half years in pain with the hope perhaps that some doctor might find the answer. But if not, was that person doomed to live the rest of her life in pain and misery?”
Fortunately, she saw a doctor at Beaumont Hospital in Royal Oak Michigan, in their Women’s Urology Center, who immediately diagnosed her problem and put her on a program that hopefully will provide a solution to her problem. No surgeries were required nor any significant medication needed to be taken that could be harmful.
I say “fortunately” because you do need to read the stories set out in the document about the horrors that some people have been put through because their urologists did not understand what could cause pelvic problems and what the solutions could be.
Frankly, if you do decide to read the patients’ stories, do so only if you have a strong stomach. You will not believe what certain women have been put through and how what was supposed to cure them has turned into a massive tragedy in their lives.
Spend 10 or 15 minutes reading the document. Sure it’s long but it is not difficult to understand. It applies not only for IC/PBS but for many other medical conditions I am sure.
As well, take Ms. Zakariasen up on her offer. Any response to her document would be welcomed by its author Kay Zakariasen Zakariasen@verizon.net
I was involved in an email exchange with her with respect to her material, not only this document, but another one which she may eventually publish and spent a couple of hours on the telephone talking with her about it.
I promised her that I would use the Windsor Square to help publicize the tragedy that so many people are experiencing, a tragedy that they need not experience.
And that, dear reader, is the biggest tragedy of all!