Interstitial Cystitis Network IC Expert Guest Lecture Transcript(icnmgrjill) Greetings everyone and welcome everyone to the ICN support chat of 01/23/01. This is our first "Meet the IC Expert" guest lecture of this year and it is our pleasure to welcome Dr. Robert Moldwin to the ICN. Before we begin, let me just offer a few tips. If you have a question for Dr. Moldwin, please whisper it to me or any ICN volunteer. If this is your first chat whispering is easy. All you do is click on someone's name until a separate window opens up and then talk there. While the room is moderated, only Dr. Moldwin and myself will be talking.
Date: January 23, 2001
Topic: An Evening with Dr. Robert Moldwin, author of "The IC Survival Guide."
Speaker: Dr. Robert Moldwin,
Moderator: Jill Osborne, ICN Founder
(icnmgrjill) We'd like to thank our sponsors of tonight's event: Akpharma (makers of Prelief) and Farr Laboratories (makers of CystaQ). We thank them sincerely for helping to make this and other ICN events and activities possible.
(icnmgrjill) The necessary disclaimer: Active and informed IC patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice. We strongly encourage you to discuss your medical care and treatments with a trusted medical care provider.
(icnmgrjill) It is my pleasure to introduce Dr. Robert Moldwin. Dr. Moldwin is an attending urologist at the Long Island Jewish Medical Center, where he is the Director of their Interstitial Cystitis Center. He is recipient of IC research grants from both the NIDDK and the ICA. He also sits on the NIDDK, External Advisory Committee, Interstitial Cystitis Database and the ICA Medical Advisory Board.
(icnmgrjill) Dr. Moldwin has been a strong advocate for the IC community and compassionate patient care. He has been featured in "Living Well" Magazine, Woman's Day, Reader's Digest and the New York Daily News. You may have also seen him discussing IC on television, with appearances on CNN, CBS News, ABC News, Fox News & WLIW. This is a very special opportunity for IC patients on-line to meet one of the true IC visionaries. Welcome!
(drmoldwin) It's a real thrill to be with you all here tonight. I haven't presented in a forum like this before and this is a real treat for me.
(icnmgrjill) First off., let me just say publicly what I've just said privately to you. Your book, the IC Survival Guide, is truly a gift to the IC Community. As I was rereading it today, I was struck by your compassion for IC patients and also vast knowledge of IC: it's diagnosis, treatments... etc. Thank you... from all of us for writing such a helpful book.
(drmoldwin) Writing the book was really a labor of love. It was something that I had been wanting to do for many years but, as things tend to go in practice and in the academic environment, projects like this often get put to the side. I owe a large debt of gratitude to my wife who really pushed me to get this book completed. I also thought that the publisher, New Harbinger Press, was really terrific since they were the people who actually approached me to write about this terribly underserved medical problem.
(icnmgrjill) How did you first get involved in IC?
(drmoldwin) I never intended to become involved in IC work. In fact, through my training and the training of most urology residents, little contact with IC patients occurs. I happened to be involved in a post grad fellowship that was primarily dedicated to understanding the causes of urinary tract infections. It was a branch of this research that was related to IC that peaked my interest.
(drmoldwin) As I learned more about IC, I became a bit dumbstruck to find the degree of medical ignorance related to its diagnosis and treatment. I thought that this would be a great niche for me on a personal level - - to deal with this underserved community. This was back in 1990 and 1991. Since I've been involved in the field, I have been absolutely thrilled. I've met so many wonderful people, both patients and other researchers. As opposed to many other fields of medicine where there is a great amount of animosity from one investigator group to another, I have found that most IC researchers tend to be warm, and compassionate individuals. They are more than willing to share and work with other investigators in the common goal to beat this damn disease.
(icnmgrjill) I think that we all understand the symptoms of IC:.frequency, urgency and pain. So.. we won't go over that tonight unless we have questions talking about those. But one thing that I did want you to discuss further are the possible origins for IC. You were the first author, in a commercial book, to discuss the many possible origins of IC and while we all agree that we don't know the answer just yet, let's go over those.
(drmoldwin) There are many theories of causation with regard to IC. Probably the most popularized theory is that there is a defect in the surface mucin of the bladder. The surface mucin of the bladder is a slimy substance which seems to protect the bladder against bacterial invasion and also protects the underlying cells and nerves against some of the caustic agents in urine.
(drmoldwin) One of the earlier studies that we did in the laboratory was to identify specific changes in the bladder mucin in IC patients. There are lots of other theories of causation. For example, some investigators have found that many IC patients have a lack of blood supply to the bladder wall.
(drmoldwin) Others have found problems suggestive of an autoimmune process. What I mean by an autoimmune process is that the body seems to actually be attacking itself. There are many patients with IC who seem to have other autoimmune problems, such as lupus and Sjogrens disease.
(drmoldwin) Another theory of causation is that we are missing some microorganism. A lot of work has been done in this field and no consistent organism can be found. However, that's not to say that we still might not be finding the problem bug.
(drmoldwin) Additionally, it is possible that an earlier urinary tract infection may have caused some damage to the nerves or cells of the bladder wall. The urinary tract infection is treated successfully but the bladder is left in a damaged state and symptoms therefore continue.
(drmoldwin) There are other theories of causation and I could spend an entire three days talking about it. I think the most important take home message here is that many problems have been identified in the IC patient. You could not say that 15 years ago. It is our greatest hope that we can use this information to develop treatment strategies for patients. For example, the medication Elmiron might potentially help a patient who has a problem in the bladder surface mucin. The Elmiron works in some patients presumably because it is very similar to the lining of bladder. When taken orally, some of the medication is excreted in the urine and might help to coat the bladder, thus preventing symptoms.
(drmoldwin) Other medications, such as DMSO (a medication which is instilled in the bladder) decreases the levels of substance P in the bladder wall. Substance P is a chemical that is found higher quantities in the urine and the bladder walls of IC patients. Substance P is a chemical that is responsible for inflammation and is also a chemical that is used to transfer pain information within nerves. When the DMSO contacts the bladder wall, the substance P is released and hopefully the patient's pain might slowly subside. Unfortunately, as the medication works, the release of substance P can cause more irritation and patients often experience a significant worsening of symptoms during the first few instillations.
(drmoldwin) I'm giving you these examples to demonstrate how our basic understanding of IC, and research, is contributing to new treatments.
(icnmgrjill) Another point that you emphasized in your book so well was that IC is rarely only a bladder problem. Problems in other organ systems are common, specifically with respect to the pelvic floor.
(drmoldwin) That's absolutely true and I think that is one of the most important issues of IC management. It is rare that I find a patient who just has a bladder problem. We've found that at least 70% of interstitial cystitis patients have coexisting pelvic floor dysfunction.
(drmoldwin) For those of you that aren't familiar with PFD, it is basically a problem where the muscles of the pelvic floor are in spasm. The muscles of the pelvic floor are responsible for relaxing when one urinates, when one has sexual intercourse or when one has a bowel movement. When the muscles of the pelvic floor begin to spasm lots of nasty symptoms can occur. Those may include: a weak urinary stream, urinary urgency, urinary frequency, pain at the time of sexual intercourse or pain a few hours or days after sexual intercourse. Patients often have accompanying constipation or lower back pain. They can have terrible urethral pain or burning.
(drmoldwin) Many of those symptoms sound just like a bladder problem. However, I can tell you that the pelvic floor may be contributing to a good portion of those symptoms. Many patients are just treated for a bladder-based problem and they don't achieve significant symptom improvement simply because this other coexisting problem has not been addressed.
(icnmgrjill) So.. let's dive into one more level. An IC patient has urethral burning that is persistent, but worsens during urination. They are negative for infection and the doctor suggests urethral dilations, as if there is a structural problem with the urethra. Correct if I'm wrong .. but aren't you saying that the burning is actually muscle contractions... or muscles that are so contracted that they don't have proper blood flow.. etc. etc.
(drmoldwin) What you're hitting on is a fairly controversial issue in the IC world. Patients who present with urinary urgency and frequency, in addition to intense burning with urination, have been classified in the past and still in the present by some as having urethral syndrome.
(drmoldwin) It is now believed that urethral syndrome is simply an atypical form of IC. Many patients with urethral syndrome have accompanying pelvic floor dysfunction. In the past, many clinicians would perform a procedure called urethral dilation. They presumed that poor urinary flow was due to an actual narrowing of the urethra. In fact, in most instances, this is not the case. The poor flow of the urine is due to muscle spasm in that area. Therefore, most clinicians today do not perform urethral dilations as a first line approach. That's not to say that urethral dilation is a terrible thing to do. However, in my opinion, it's not a first line treatment since it doesn't address the primary problem.
(drmoldwin) Interestingly, many patients have had improvements with dilations however, the typical scenario that I see very frequently in practice is that of a patient who comes to the office with these symptoms stating that their previous doctor initially performed a urethral dilation. It helped for six months and the dilation was, therefore, repeated. The symptoms then came back in 3 months. Yet another dilation was performed and it did not help.
(drmoldwin) In our practice, the most common therapies that have been found helpful are conservative approaches. We advise patients who have significant accompanying pelvic floor spasm to take warm bathes on a twice-daily basis. They are instructed to avoid pushing and straining with urination, since this very frequently tends to worsen muscle spasm. Constipation is aggressively controlled with diet changes. Often laxatives are used. Finally, we found that muscle relaxants can be extremely helpful to decrease symptoms.
(drmoldwin) Another problem that often occurs... in patients who have this problem is nerve malfunction. We frequently will dispense medications that can affect the overactive nerves in this reason. One of the classic medications that is given in this regard is Elavil which was originally used as an antidepressant. When used in low doses, this medication and other similar medications have been extremely useful in decreasing chronic discomfort.
(icnmgrjill) Let me just say that his book has a very thorough discussion of this. Let's move on because we have lots of questions. If you have a question, please whisper it to me or any ICN volunteer.
(icnmgrjill) Sky has the first question. Are you noticing if the new formulation of DMSO is causing more pain?
(drmoldwin) No. I haven't really seen that in practice. We have, for the past many years, been using a DMSO cocktail, which includes DMSO, heparin, sodium bicarbonate, a steroid and an antibiotic. I think that the DMSO cocktail is much less caustic to the bladder surface when compared to the tradition 50% DMSO solution.
(icnmgrjill) Should a patient taking elavil who is experiencing heart palpitations stop?
(drmoldwin) Yes -- and talk with your doctor about this. Elavil (and other medications in that class) can cause heart palpitations and may need to be stopped if that is occurring. That is an issue that should definitely be discussed with your medical doctor.
(icnmgrjill) Next question is from Teresa. She wants to know why, on some days, food bothers her but on other days, it doesn't? She says this is true especially closer to my period.
(drmoldwin) I think that is an excellent question since this a fairly common problem. There is no question that foods can have different effects on symptoms at different times of the year. I think that one of the most important issue as far as food sensitization is concerned is the menstral cycle (for women, of course). If you think that this is a possibility, the most important thing to do is to start a "food log" - - and time it with your menstrual cycle. If you really see that such an association exists, you can definitely binge on the "bad stuff" when times are good. :::chuckles::
(icnmgrjill) The next question is from Suzy. She wants to know if anyone has had nerve blocks for IC pain?
(drmoldwin) We, as well as our pain management center, have performed innumerable nerve blocks. In my experience, it is extremely difficult to predict which patients will respond and which ones won't. When I speak of nerve blocks, this involves the administration of an anesthetic often accompanied with a steroid (an anti-inflammatory) to a nerve that might be transmitting pain. The nerve block can be administered at the place where the pain seems to originate all the way to the spinal cord. Most of the nerve blocks that I have given involve injection along the course of the urethra or at the neck of the bladder. For patients with clitoral pain, there are some procedures that have been developed to deal with this problem as well. It is interesting to see that the anesthetic that is used should decrease pain for about 2 to 3 hours. In fact, in many instances, the pain is lessened for days to months.
(icnmgrjill) The next question is from Irma. Why is there always blood in my husbands urine?
(drmoldwin) When you mention blood, I presume that we're talking about blood that can only be seen under the microscope.. This is a very common problem that is seen in all the practices of all urologists. Blood in the urine can come from many sources. The most important potential problems associated with blood in the urine are stones or tumors in the urinary tract. The workup is to exclude those problems is always undertaken. In most instances, absolutely nothing is found. It's important to realize that many patients have blood in their urine as a normal finding for them. Once the significant medical problems have been excluded, we usually do not evaluate further and reassure the patient that no significant problem exists. Visible blood in the urine also needs to be evaluated by your doctor.
(icnmgrjill) This is from Francine. She says "Many of my fellow IC sufferers complain about numbing pain in the feet and some suggest that this could be related to IC. Any comments?"
(drmoldwin) First off, numbing in any of the extremities should be evaluated by your medical doctor since one really needs to exclude the possibility of some existing spinal problem. However, I agree with you that numbness, particularly in the big toe is experienced by many patients with IC and other pelvic pain syndromes. In fact, the nerves that go to your big toe originate around the same area of your spinal cord as the nerves that go to your pelvis. When one performs the Interstim test procedure (The Interstim is a form of neurostimulation where the nerves that go to the pelvic floor muscles are electrically stimulated. This procedure has been used in the treatment of urinary incontinence and urinary "urgency-frequency syndrome." Several recent reports suggest that the device may improve symptoms for some IC patients.) one finds that the correct nerve (going to the pelvic floor and bladder) is being stimulated when the big toe wiggles.
(icnmgrjill) This is from Francine again. Is urinary retention related to IC?
(drmoldwin) Urinary retention means that the bladder is not emptying out completely. There are lots of causes for retention some of which include neurological problems, actual anatomical blockages, and most commonly in the IC patient, pelvic floor spasm. The pelvic floor muscles are often contracting so tightly that when the patient tries to urinate the blockage caused by the tightening prevents the bladder from emptying completely.
(drmoldwin) When urinary retention occurs, it's important for the doctor to try to found out the specific cause. As I mentioned, the most common cause is muscle spasm of the pelvic floor, but other problems such as neurological disease or the presence of a cystocele, a dropped bladder, can cause the same type of problem. The bottom line - it is common but needs to be checked out.
(icnmgrjill) Alexa has the next question. She wants to know if IC will resolve if pelvic floor rehabilitation improves the muscles.
(drmoldwin) There are many patients who have multiple problems at the same time. It is quite common for me to see a patient who has IC, pelvic floor dysfunction and vulvodynia. When these problems occur together, they often respond to therapy together. So to answer your question, if I treat that patient with all of those problems just for pelvic floor dysfunction - yes, the symptoms of IC will often settle down a great deal, however, I wouldn't necessarily expect them to disappear. In most instances, the IC will still need to be treated (Note: If the symptoms did completely disappear, I would actually wonder whether IC was present, since the symptoms of IC overlap to a great significant degree with pelvic floor dysfunction). Unfortunately, the relationship that exists between these conditions also has a negative edge. That's to say that if your pelvic floor spasm acts up, it can have a negative impact on the symptoms of IC or of vulvodynia - even, for that matter, irritable bowel syndrome. That's why it's so important to determine all of the problems that exist and to treat them simultaneously to get the best results.
(icnmgrjill) Don has the next question. He wants to know if any of the common IC drugs (Elavil, etc.) would help with bleeding Hunner's Ulcers?
(drmoldwin) Hunner's ulcers are patches of inflammation that are seen in the bladders of some IC patients. We believe that about 5% of IC patients actually have these ulcers. Hunner's ulcers may cause significant symptoms in patients that have them. And, as mentioned in this question, they can bleed at times.
(drmoldwin) Any medication or other therapies that are used in the management of IC can improve the symptoms related to Hunner's ulcers. With specific reference to bleeding, no specific therapy (oral therapy) that I know of can stop the bleeding. In my experience, most Hunner's ulcers bleed when patients try to hold urine in their bladders longer than usual. The ulcers actually tear a bit... and that's when the bleeding begins.
(drmoldwin) We've had some really excellent results with the use of laser therapy on these ulcers. Within 48 hours, the vast majority of patients have had a complete remission in symptoms. Actually, we recently reviewed the first 24 patients who have undergone this therapy. Pain scores went from (off the top of my head) 9.4 out of 10 to down to 1.2 on their first post-operative office visit.
(drmoldwin) The biggest problem that we've had with this therapy is that symptoms often recur within 6 to 9 months in about 50% of patients. Looking back into the bladders of these patients has shown that the ulcers recurred. On the flip side, we have patients who are still feeling great after three years.
(icnmgrjill) Lesa asks.. Why do catheters often cause burning, pain etc a few hours afterwards?
(drmoldwin) The urethra is a very sensitive area. Even very mild stimulation with a catheter will often result in some mild inflammation in this region. That's why many urologists will pre-medicate the urethra with an anesthetic jelly before catheter insertion. Additionally, patients who have pelvic floor spasms will often get pain not only because of mild surface inflammation, but because the catheter is pushing against very tightened sensitive muscles as well. It often may help to take a warm bath that evening to let things settle down.
(icnmgrjill) Melanie asks if you think that physical therapy will become a more accepted form of treatment for IC. Recently, she was turned down by her insurance provider.
(drmoldwin) I would say that I really hope so. I think that as we gain more knowledge of pelvic floor dysfunction, and as more literature related to pelvic floor dysfunction is published, the more insurance companies will provide care for this very frequently seen problem. I also believe that it is extremely important for the doctor to present information to the insurance carrier properly in order for you to achieve these benefits.
(icnmgrjill) Di has a quick question. You mentioned a low dose of Elavil. How low?
(drmoldwin) I wish I could give a pat answer for that but to give you a perfect example of how low the dose can go - I had a little old lady come to my office who could not tolerate even the lowest dose of Elavil, which is 10 mgs. I asked her to break the pills in half and take that. She still said that she was fatigued all day long. I then told her to take a hammer and smash the pill. She took a tiny sliver and that was just fine with her. We then slowly increased her dose to 75 mgs and she did great.
(icnmgrjill) Crissy asks... Have you heard of using probanthine for IC?
(drmoldwin) Probanthine is a medication used to treat peptic ulcer disease. It's also used to relax the bladder. I wouldn't expect medications such as this to help most IC patients, unless there is some accompanying bladder over activity (about 5-10% of patients). Bladder over activity means that the bladder is contracting when it's not supposed to. That's not typically seen in IC patients since IC is really a condition of bladder over sensitivity, meaning that you feel full or feel pain with only small amounts of urine in the bladder. In fact, probanthine might make the slow urine stream of an IC patient even slower - So- -be careful with that medication and other medications like this (such as Detrol, Ditropan, Levbid).
(icnmgrjill) What are your thoughts on alternatives? Which do you feel show some effectiveness? What caution, if any, would you urge for IC patients. (Added after the chat)
(drmoldwin) I think that the best advice in the area of alternative medicine is to be skeptical. There are a lot of products out there with all sorts of unsubstantiated claims -it's actually a multibillion dollar business! Perhaps some of those products do work, but until those products are held to the same scrutiny as standard medications, we'll never know. My biggest concern is that some of these "natural" alternatives can have harmful properties as well. As you mentioned, some of the herbal teas have been found to cause flares in IC symptoms.
(drmoldwin) Fortunately, there's recently been a big push by consumer groups and even the National Institutes of Health to get these agents evaluated appropriately. There's now a Physician's Desk Reference for Herbal Medicine. All of this is just great and I'm looking forward to incorporating these alternative strategies into my practice when I feel comfortable that I'm maintaining the principle of "do no harm."
(drmoldwin) All that being said, "alternative care" such as biofeedback, physical therapy with myofascial release, meditation, yoga, and acupuncture has been helpful to many patients. I agree that Quercetin, may at some point be found to be helpful to the IC patient; but like any other drug, I'll be waiting to see the results of efficacy and safety.
(icnmgrjill) Any last words??
(drmoldwin) Even though many patients are still suffering with IC, I really feel optimistic about the future. Over the past ten years, incredible strides have been made as far as our understanding of the basic mechanisms of often incapacitating medical condition. I believe that over the next several years, we'll start to see novel therapies develop as off shoots of this research. Be willing to explore treatments. Talk with your doctors frequently. It's so important for all patients to keep up to date with information regarding IC. I wrote my book with that goal in mind - but it's also important to keep up to date with groups like the ICN and the ICA. I also believe that it is extremely important to work as a partnership with your doctor exploring all the possible therapies that might apply to you.
---------------------- End Presentation ---------------------
Dr. Moldwin's Contact Information:
Robert Moldwin, MD
Director, Interstitial Cystitis Center
Long Island Jewish Medical Center
270-05 76th Ave., Oncology Building, 4th floor,
New Hyde Park, NY
Books & Resources That You can Purchase:
The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $14.95/$12.00 for ICN Subscribers
Group Discounts Available for purchases of 5 or more!
The necessary disclaimer: Active and informed IC patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice. We strongly encourage you to discuss your medical care and treatments with a trusted medical care provider.
© 2001, The IC Network, All Rights Reserved.
This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Dr.Robert Moldwind and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.