The Pioneers of Interstitial Cystitis Review
I received my severe and painful case of IC in 1982. In 1988 I began writing a newsletter on the topic which ran through 1991. My book, “The Pioneers of Interstitial Cystitis” is the reprinting of the fruits of learning during that time.
Then, as today the learned medical materials available describe IC as a condition of unknown origin and unknown cure. As early as 1989 the readers of my newsletter knew the cause and at least some treatments for this syndrome, condition, disease…you choose the name. My book, The Pioneers of Interstitial Cystitis is a snapshot in time of a group of layman researchers who struggled for understanding when a great many physicians neither knew, nor appreciated interstitial cystitis.
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Or here… The Pioneers Of Interstitial Cystitis
Now available in paperback too! Also on Amazon/ Barnes&Noble/ Apple Books / and many other retailers.
You, dear reader, are here because you have a personal stake in your unknown bladder malady. But just in case you need verification of the subject of the article, let’s start with the fact that IC is a condition typified in part or all by a burning sensation during urination indistinguishable from your garden variety cystitis. But then, you also may have pelvic pain, problems in and around your female parts, or if you are a man, the prostate. Your urine cultures are clear, meaning there is no bacteria present unlike regular cystitis. Your intestinal tract may be involved.
You need to know that IC is the absolute monarch for urinary tract infections. Once you get it, it’s yours for life. Urgency and frequency are hallmarks of this insidious and progressive cystitis/painful bladder syndrome. Some IC’ers go nuts. They can’t handle the pain that eventually comes in many cases.
Chief among your symptoms of interstitial cystitis is frequency of urination and pain in the bladder during the course of the disease. The disease is usually marked with an increasingly scarred bladder. A commonly culturable infection of the bladder may or may not be present. It may begin with having to go more often and after bedtime and end up with you having to tinkle every five minutes, 24 hours a day.
Treatments for this cystitis/painful bladder syndrome syndrome run the gamut from seeing a psychiatrist to having your bladder removed.
Women get IC nine times more frequently than men. Medications are woefully lacking, and few are created specifically for our affliction.
There are tons and boatloads of research material describing IC, and about a thimbleful which actually offers solutions to do something about it.
Diagnosis is fairly straightforward these days, what with bladder distension.
However, while information on your inflammation is voluminous, as a patient concerned about your health, be advised that treatments to alleviate pain are woefully missing from your physician’s playbook.
You are forced to come to the conclusion that the answer for your pain lies outside the sphere of your immediate healers. You’re just going to have to get down in the weeds of pain yourself and dig for your own treatment salvation.
After a long absence from the IC scene I am stunned that today so little has changed. Same people. Same questions. So little progress. If you have IC it is important that you read this book. There are things we discovered years ago that you don’t know. There are questions you need to be asking. There are avenues for self research you have not thought about. There IS hope. But you MUST be active in your own treatment! Knowledge is the key!
“It takes a dedicated individual to fully develop their cognitive abilities, to be able to RATIONALLY and critically THINK for themselves. Opinions vary. Facts don’t. Perception is the single variable that precludes rational thought. – Attributed to taxpro4u03”
When I began my newsletter, The ICDisclaimer, I did it not only to help, but to get help with the treatment and cure for interstitial cystitis, and I was not disappointed. Over the three year run of my little snail mail magazine, together, my contributors and myself learned a great many ways to minimize the pain of IC. Along with that we discovered that it is the result of a bacterial infection, plus a trigger event.
Interstitial cystitis needs three things for genesis:
1. A host.
3. Trigger event
Research scientists, then as now focus on describing IC rather than investigating the cause. It is rather like someone from Mars discoursing on the pretty flames of a fire to their fellow Martians. They know the colors, composition of the gases, temperatures and so on, but the thing they don’t understand is that there would be no fire without those burning sticks of wood underneath. Worse, if you take a Martian by the tentacle and point at the burning wood, they seem so entranced by the flames that they refuse to see the hot coals beneath. It is infuriating, trying to work with Martians.
Simply put, you, the host, is infected with certain pathogenic bacteria, which may actually be quite common. Then, something triggers or allows the bacteria to multiply inside the meat of your bladder. In other words, they grow inside your bladder wall. What is still unclear is what comes first. Does your progressing infection affect your immune system, or does the immune system go haywire and allow the pathogens to multiply? Regardless, both conditions are present in the IC patient.
My book, The Pioneers of Interstitial Cystitis is first and foremost about the readers who, often at the risk of their own ruinous health, experimented with pain relieving substances, both of the prescription and herbal variety. Afterwards, they compared notes with each other to find commonality, always sharing their experience.
The difference between the research scientist and the IC sufferer is that one delighted in the theoretical, while the other went full bore at the practical.
The beginning purpose of the ICDisclaimer was to put practical, pain reducing, life saving information into the hands of the IC victim. Along the way it discovered and spotlighted the bacterial side of IC.
If the reprint of The Pioneers of Interstitial Cystitis achieves nothing else, it is hoped that it will popularize the FACT that IC has a verifiable bacterial component. If the layman patients with interstitial cystitis and sufferers at large come to take this as proven fact, then perhaps one day the theoretical research community will as well. When that day comes, and they turn their considerable research firepower in the right direction, treatments and possibly a cure will be achieved.
If The Pioneers of Interstitial Cystitis is well received it will also become a printed book. As of now it is available as an eBook.