We’ve all seen it before. Ten years ago, someone suggested that magnets could cure IC. Wrong!!! Then it was dozens of brands of vitamins, supplements and, yes, for those super gullible patients, you can even buy a sugar pill from a website that suggests that it can prevent the onset of IC. These are ALL absurd yet, today, more and more web advertisements appear promising a “cure” to many different illnesses, including IC.

Let’s take a closer look at one ad “An Amazing Discovery Cures IC”

If you clicked on it, you’d be taken to a one page website that has only one goal. To get you to pay $29.99 to buy a book by an author that few, if any people, know. We see no medical credentials, no research citations, nothing other than an emotional pitch designed to get you to fork over your precious dollars for an e-book.

They share a few patient stories that are designed to draw you in. Strangely, though, they appear quite old. One refers to a therapy, silver nitrate, that is rarely done for IC and has been out of favor as a therapy for many years now. Another refers to a “famous” Beverly Hills clinic that was closed SEVERAL years ago after the physician in charge had her medical license suspended for five years, in part, due to her treatment of IC patients. They offer some testimonials but, then again, we don’t know if these are real testimonials.

They then criticize doctors for daring to prescribe medications (aka drugs) that treat the symptoms of IC without going to the “root” of the problem. Of course, that is the million dollar question. If we know what caused IC, we could then create a cure but research has yet to tell us why the IC bladder produces the antiproliferative factor which slows down healing. I can assure you, though, that as soon as the cause of IC is discovered and verified by credible researchers, it will be presented at urology conferences, in journal articles and released to the general public & scientific community at NO CHARGE!

Lastly, the website shares that they have miraculously discovered “the actual cause” of IC which you can learn about by paying $29.99 for an e-book! Of course, there are no sections of the book to preview. No quotes from the book that suggest what this cure is. They basically say “once you read it, you’ll believe it.” NOT!!! We are not this gullible!

If this individual has discovered the cause of IC, why hasn’t she shared this with the research community? Why hasn’t she spoken at IC events to offer comfort to others, particularly those who don’t have access to the internet?? What are her creditials?? What physicians, if any, has she worked with to verify that her suggested treatments are safe and reliable?? If she has discovered the cause of IC and released her information to the medical community, she could shorten the search for the best treatments for IC by years and reduce the suffering of tens of thousands of patients.

This bothers me! As much as I would like to say that we have a “cure” for IC, we don’t. We don’t know why those of northern european heritage seem more prone to IC. We don’t know why Cherokee Indian men appear more prone to IC. We don’t know why the bladder produces the antiproliferative factor which then slows cell growth and healing in the bladder. We’ve only recently discovered one connection between IC and IBS, which is a shared C-fibre afferent nervous system.

What we do know, however, is that IC does have a genetic component and that some families, like my own, can track IC back several generations. In our case, the “cure” would likely be gene therapy which is years away from fruition.

The great news, however, is that we DO have treatments that help. Rescue instillations, for example, calm the nerves in the bladder and can turn off pain, flares and discomfort. Antihistamines can control daily inflammation. Even new OTC “quercetin” based supplements have solid RESEARCH behind them which prove that they can help reduce the symptoms of IC.

Tony Buffington, an accomplished IC researcher at Ohio State University, was asked about product safety in a guest lecture on the ICN website. He said:

I was taught to be wary of “experts” who say:

  • that diet causes disease (although it is true that all patients were eating when they became ill)
  • that processed foods are “poison”
  • that natural vitamins and minerals are better than synthetic ones (without evidence in a relevant population)
  • that they or their products can produce miracles
  • that they are victims of a conspiracy
  • that they offer only testimonials (which are by definition positive) to support their claims
  • and finally, that they have something to sell (usually at a high price!)

The antidote to all this is some advice that is 4000 years old; don’t accept it, don’t reject it, check it out! And in medicine, the way to check it out is evidence-based medicine. This means asking the question… what is the evidence that this treatment is safe and if it is safe, what is the evidence that it is effective?

So, buyer beware. Please be a cautious and informed consumer. Be wary of anyone claiming to “cure” or “heal” IC. Or, atleast, ask for a research study which supports their claim and also ask them why they haven’t shared their discovery with the world!

Jill O.