Customer Reviews

The Interstitial Cystitis Survival Guide: Your Guide to the Latest Treatment Options and Coping Strategies

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I usually do not get self-help books, but since finding out for the second time in twenty years that I have full blown IC and being told to read some books on this...well, if I have to do it, this is an excellent book for reference. It is hard to find physicians that are willing to treat their women patients and the female public at large as if we have half a brain. This doctor writes clearly and concisely, but he doesn't 'dummy' down the topic, nor does he patronize the women who are going to be the major group purchasing this book.

The last time I was diagnosed with IC was in 1983. Apparently things have changed significantly in this field since then. When I was first diagnosed I was only 24 or so, and it was hell trying to get anyone to recognize I had a 'real' problem which was not female related, nor was it 'all in my head'. My husband and I were frantic to find a solution, and at that time they did not understand what was causing this nor basic treatments for it, though they were experimenting with DMSO which eventually solved the problem for several years. The tendency for many doctors to dismiss my pain and agony of this condition as being 'mental' was the first step on my path to med school and neuroscience in spite of my deafness.

This book provides all the current information that a patient needs to know. I actually read the book in an evening, it was that clear. Since knowing what doctors usually write like in medical journal Moldwin deserves praise for writing such an understandable and intelligent book! I am beginning to realize that this condition is obviously something which plagues a lot of women (and to be fair, some men). I also am pleased to note that finally it is being taken seriously by physicians, and that most likely, this is something I will have to spend my life dealing with.

It certainly makes it easier to deal with it (and knowing I will have to have outpatient procedures) when I know the doctors take it seriously. I've already implemented some of this doctor's recommendations and find they are helping somewhat. I highly recommend this book to anyone going through this, and I also recommend contacting a support group (I cannot since I am deaf) which will help deal with the emotional and mental fallout from this condition.
Karen Sadler,
Science Education,
University of Pittsburgh

Dr. Moldwin is known not only for his knowledge of and interest in IC but also his care for the IC patients in his clinic. As we reviewed the book, it became clear that he has truly listened to the concerns of the men and women with IC. He also understands the dilemmas that many physicians face as they seek effective treatments. He has responded to both needs by writing an IC Survival Guide filled with useful information & strategies. It is exceptionally well written and an ideal book for physicians and patients who want a thoughtful and organized discussion of IC, patient care, treatment strategies and related research.

His discussion of IC treatment options is the most comprehensive we've seen to date, with explanations on how the treatment is supposed to work as well as known research results and side effects. In addition to the old standards (DMSO, Elmiron & others), he also covers most of the newer proposed treatments (BCG, Capsaicin, etc.). These chapters alone are worth the price of the book.

Another highlight is the discussion of related conditions to IC, such as pelvic floor dysfunction, vulvodynia, urethral syndrome, UTI and others. The pelvic floor discussion explains pelvic floor physiology and how, over the long term, pelvic floor dysfunction can contribute to a cycle of bladder pain and irritation. Men with IC will appreciate his chapter titled "The Male with Interstitial Cystitis." In addition to covering conditions commonly confused with IC, such as diseases of the prostate, bladder, seminal vesicals & pelvic floor, he also outlines a treatment plan subtly different from that used with women.

IC patients seeking new information on pain management will find his discussion of narcotics extremely useful as they consider various pain medications. He differentiates between short- and long-acting narcotic therapies, and the side effects associated with various medications. His discussion of the concerns over the use of pain medication will ease many unnecessary fears for IC patients. Inspired writing!

And, a first in print, he offers a discussion of pregnancy and IC, including a guide for patients considering C-section versus vaginal delivery!

The "Interstitial Cystitis Survival Guide" is likely the best mass-market book to be published on IC in recent memory. It is destined to be on the shelves of every clinic and every patient seeking guidance. Both newly diagnosed patients and grizzled IC veterans will find new and helpful information included.

Jill O, Founder & CEO Interstitial Cystitis Network

While I commend Dr. Moldwin for writing this kind of book, I feel it falls short of being a true survival manual for IC patients. The content is excellent,.... Certainly being presented by a doctor lends the information even more credibility and eliminates the bias of some of the other sites. But Dr. Moldwin doesn't go beyond the "politically correct" boundaries in his descriptions of the potential risks associated with many of the standard procedures. Far too many people with IC have experienced severe reactions to the various invasive procedures (cystoscopy, hydrodistension, and bladder instillations) that the mere mention that some patients may feel a little worse afterwards just doesn't match up with reality. I know that there is a strong fear amongst IC support providers that telling all the truth may scare people away from "needed" treatment, but not knowing the truth unfortunately does NOT prevent these bad reactions from happening!

I really wanted to LOVE this book. I have been impressed with Dr. Moldwin's work on Pelvic Floor Dysfunction and IC and I really liked his support for aggressively treating IC pain. But to underplay just how badly some IC patients react to certain procedures just doesn't make it a survivor's manual. It's a wonderful source of information and a good starting point for educating your doctor. ...

The Interstitial Cystitis Survival Guide: Your Guide to the Latest Treatment Options and Coping Strategies
By Dr. Robert M Moldwin, M.D., F.A.C.S.
New Harbinger Publications, Inc ©2000 ISBN 1-57224-210-8

Interstitial cystitis is a chronic and debilitating disease of the urinary tract and bladder that affects approximately one million people. It may not be just one singular illness but one incorporating many different illnesses. There is an inflamed and irritated bladder wall that leads to many bladder symptoms. The bladder wall of an IC patient will have stiffening and scarring of the bladder, less bladder capacity as a result of the scarring, small pinpoint bleeding on the bladder (glomerulations) and ulcers in the bladder lining (Hunner's ulcers). 5-10% of IC sufferers will have Hunner's ulcers, the rest have a non-Hunner's type. So much isn't known about the illness, even though it has been around for a while now.

Dr. Robert M Moldwin is director of the Interstitial Cystitis Center of the Long Island Jewish Medical Center and is an assistant professor at the Albert Einstein College of Medicine at Yeshiva University in New York City. Dr. Moldwin's book, The Interstitial Cystitis Survival Guide, has been considered the "bible" of IC. It is advertised everywhere and is one of the very rare IC books published by a traditional publisher and not self-published. At 11 chapters this book is very all-encompassing. It describes the basics of IC, the diagnostic process, the medications and treatment options they were exploring prior to 2000, how it occurs in men, how sexual functions are impaired, and has a good resources and glossary. All in all it's a very good book; however, it is starting to get a bit outdated. Some of the treatments and medications aren't used any longer due to their not being found in clinical trials to work.

The book itself is 236 pages and priced at a reasonable $15.95. For anyone freshly diagnosed with IC I'd highly recommend it. It has several coping strategies and it will explain all that is currently known about this baffling and confusing illness. It doesn't go into diet as much as it should. I think that there are websites with far newer material than the book, but the book is portable and out there and until a better book comes along it will always be a favorite among patients. Written by a doctor who specializes in IC doesn't hurt.

The All Info About Interstitial Cystitis website (AIA:IC) http://cystitis.allinfoabout.com highly recommends this book for its readers.

If you are newly diagnosed with IC, you need this book. It gives an overview of all the conventional treatments, and tells you what to expect from the tests you'll be having.

If you are the type of person who doesn't automatically trust conventional medicine, weigh carefully the pros and cons of the tests - eg even in this very conventional book, the author admits that a cystoscopy and bladder distention under anesthesia(the first test you'll inevitably have) doesn't really help establish whether you have IC or not. And it can cause a lot of people pain (and some people, a benefit).

The author discusses what he calls "pelvic floor dysfunction", and if you think this might apply to you, you should read the book "A Headache in the Pelvis".

Good luck, people do get better!

I have read many books on IC because I have it. I need to tell you that I have NOT read this one yet but feel compelled to tell you that I have found relief from the pain and how you may be able to also, right now in about twenty minutes.

Most people have baking soda in the house. Get a level teaspoon of it and add it to one third cup of water. Let it fully dissolve and drink it. It doesnt taste great but it will stop the pain in about twenty minutes. The burning will go away! I'm not kidding. This will solve the immediate problem. I think it changes the ph of the body which is too acid. It makes it more alkaline and that somehow works.

The next thing I stumbled across while being treated for PTSD (post traumatic stress disorder) and anxiety was to be prescribed Neurontin (or generic name: Gabapentin). This seems to have gotten rid of IC almost entirely! My doctor and I didnt know this would happen! We just wanted to quell the anxiety problem. Now I only need to use baking soda one or two times a month. I had to increase the dosage of Neurontin slowly and after a while to everyones amazement the pain went away. I dont have to tell you how life is such a drag with chronic pain, you know. So I just had to write this in the hope that it would help you.

I didnt want invasive operations. And I read that they didnt work. I dont exactly want to push drugs but boy do I feel better. I hope you do too!!

Dr. Moldwin has written an excellant resource, which should be in the library of every interstitial cystitis patient. The information is easy to understand and explains not only diagnosis, but treatment options. In my 25 plus years with IC, this is the most helpful book yet.

First let me say I do a lot of research on health and have published articles on natural remedies. When I first got IC I read, "Solving the Interstitial Cystitis Puzzle: A Guide to Natural Healing" which is also a good book that I recommend but it only covers "alternative treatments" and is based largely on the theory that your Ph level controls IC. Which I think highly of the Ph theory overall, and do think it helps to alkalize your body, it is not going to cure most cases of IC. Plus, it takes longer and when your privates are on fire and you're running to the bathroom every 5-10 mins you want relief ASAP.

"The Interstitial Cystitis Survival Guide: Your Guide to the Latest Treatment Options and Coping Strategies" does offer therapies that can help immediately or much faster. One of which is the prescription Drug, Elmiron (but very $$$), which I have found to be a Godsend. Thus, I would read this book first then the other.

If you have IC I highly recommend both books. Each book offers different ideas, solutions and remedies and since all IC patients suffer from different foods and in different ways, you really need both books.

While you are waiting on your books, drink lots of water and try kegals. Both have helped me a lot. You may not be able to tolerate kegals if you are in a flare, don't do them. Wait till the flare subsides.

Stay away from alcohol (especially beer), sodas and chlorinated water. It is worth it to buy bottled water (I tried Britta, but bottled is better). I recommend Deer Park water because it's Ph is 8 (and the plastic bottle is thinner than traditional water bottles thus, not as harmful to the environment).

Good Luck and feel free to ask me any Qs!

I couldn't be more excited about the release of this book. Finally, a book written for IC patients by an IC knowledgeable doctor. The IC Survival Guide contains all the latest information on coping with Interstitial Cystitis. It is an excellent reference for the undiagnosed, newly diagnosed or veteran ICer. A lot of very valuable information all in one place including a discussion on pelvic floor dysfunction and how it effects IC, which hasn't been looked at closely until recently. I would recommend this book to every IC patient and the people who love them. A must have.

I found this book informative, but I must admit a bit outdated in the I.C world. It does provide some insight into the condition as well as the devleopement of treatments and research.