An Interview With Dr. Robert Moore

Dr Robert D. Moore is an internationally recognized Laparoscopic and Vaginal Reconstructive Surgeon and received his medical degree from the University of New England in 1994 where he graduated top in his class. While at the University he was involved with neurologic and neuroscience pain research, receiving multiple grants and publishing in this complex field. He completed a four year residency in Ob/Gyn at the Maine Medical Center in Portland, ME and then completed a two year fellowship in Urogynecology and Radical Pelvic Surgery at Northside Hospital in Atlanta, GA. Following this, he completed another year of advanced training in Laparoscopic Reconstructive Pelvic Surgery. Following fellowship, he returned to Maine for approximately 2 years where he was the only fellowship trained urogynecologist in the state and was considered one of the regions top laparoscopic surgeons, even at this early stage of his career.

Dr Moore is currently the Director of Advanced Pelvic Surgery and the Co-Director of Urogynecology at the Atlanta Center for Laparoscopic Urogynecology. He has held and continues to maintain teaching appointments with the University of VT, Piedmont Hospital (teaching institution for Emory University) and is faculty/lecturer/consultant for many prominent companies within the field of Urogynecology including: CR Bard Urology, American Medical Systems, U.S. Surgical, Ethicon Endosurgery, Watson Urology, and Innovation in Medical Education and Technology.

Dr Moore is board certified and a Fellow of the American College of Ob/Gyn and the International College of Surgeons. He is member of the American Association of Gyn Laparoscopists, American Urogynecology Society, International Urogynecology Association, and the American Urologic Association.

May 1, 2005
1) Why is IC so hard to get a diagnosis?

IC is a very difficult diagnosis, mostly because physicians #1 don’t know about the diagnosis and #2 even if they are aware of the diagnosis, they don’t think it is very common and therefore are not familiar with the symptoms or the disease and therefore also have no idea how to diagnose it or who to send patients to get a proper diagnosis. Typically pain patients get labeled very early on in their lives (or soon after developing a chronic pain type syndrome) as being very difficult patients and therefore most doctors put up walls when dealing with these type of patients as they really don’t know how to properly take care of them and because of this they feel either insecure or they don’t have the time or want to take the time to truly listen to the patient and then try to help them. Acute pain is one thing, doctors have an algorithm and they can follow it, rule out pathology and then hopefully find a cause for the pain and solve the problem. The patient feels good and so does the physician. With chronic pain, the patient gets frustrated, as does the doctor and eventually the doctor throws his/her hands up in the air and says I can’t help you and I don’t know who can…which is certainly very frustrating for patients and why women with IC see so many physicians, i.e. searching out a cause for their symptoms because they know something is wrong.

IC is also very difficult to diagnose or even have physicians think about early on in women because it mimics other disease states that seem more common or at least physicians are more aware of them. I.e. if a woman has pain in her pelvis, the immediate thought is endometriosis, which certainly can be a cause of pelvic pain in women, and needs to be ruled out as a cause of pain. However in women that get worked up for endometriosis, don’t get relief with oral contraception or other hormonal agents and eventually most likely have diagnostic laparoscopy surgery (as the only true way to diagnose endometriosis is with direct visualization of the pelvis with laparoscopy) and no endometriosis is seen are told they probably have “invisible” endometriosis and continue to get treatment for this with no relief. These patients most likely do not have endometriosis and IC should be considered, but usually isn’t and then this is when the patient and physician get frustrated and she eventually goes to another doctor and it starts all over again. Even in patients with visible endometriosis, IC should be considered, because many women have concomitant IC and endometriosis and both disease states needed to be treated. I.e. a patient is found to have endometriosis, has laser ablation of the endometriosis, gets treated with hormones and still isn’t 100% better and then goes back to surgery and no endometriosis is seen, is then told there is nothing else that can be done. This patient may have IC as well.

As many as 4-6 of 10 patients with endometriosis may have concomitant IC as well and this needs to be considered and treated. Gynecologists are becoming more aware of IC and are starting to include this in their differential diagnosis, however, most still do not and therefore patients are not getting diagnosed or sent to experts in the field that can treat the problem. So that is one problem, the “evil twin” of IC is endometriosis, many of the symptoms are exactly the same and therefore any women with pain in the pelvis are considered to have endometriosis and very few physicians consider the bladder as a possible origin of the pain, even if patients don’t improve with treatment for endometriosis. Most gynecologists or family doctors/intermedicine doctors don’t even ask if the patient has any bladder symptoms, therefore the diagnosis is never thought of. That is why most women see an average of 7 doctors before getting diagnosed with the problem and it takes an average of 5-7 years of having symptoms before getting diagnosed. A woman sees a gynecologist or family doctor for pain in the pelvis or abdomen, the other pelvic organs are always considered, i.e. uterus, fallopian tubes, ovaries, intestines etc., but the bladder isn’t traditionally considered and it certainly needs to be.

Other disease states also mimic the symptoms of IC, especially urinary tract infections or overactive bladder type symptoms. Many women with “recurrent UTI’s” don’t have UTI’s or infections at all, they just have the symptoms and they and their physicians just assume they have infections and treat them with antibiotics without confirming the diagnosis with a culture (not just a urine dip in the office). They get treated with antibiotics and may feel slightly better however they were probably just having a flare of IC and would have felt better with or without the antibiotics. The symptoms of recurrent UTIs, i.e. burning with urination, urinary urgency, frequency, pain with urination, relief of pain or pressure after urination, etc. are all the same symptoms of IC as well. However many patients et sent to urologist for recurrent UTI’s and even with negative cultures, never get evaluated for IC, they just continued to get treated with antibiotics for presumed infections and never get better and usually their symptoms worsen over time.

It is assumed that if a patient gets sent to a urologist for bladder type symptoms (i.e. recurrent UTIs) that they automatically will get diagnosed and treated correctly, when this is far from reality, therefore it is up to the referring physician to ensure the patient is getting treated properly and sent to the appropriate physician. All urologists (and even urogynecologists) are not up to date on IC or treat it properly, therefore it is very important a patient gets sent to a specialist that has an interest in IC and an active treatment center, up to date treatment protocols, etc. otherwise, the patient gets sent to a urologist, get a series of tests, studies, procedures (i.e. urethral dilations! an archaic treatment that really has no place in modern medicine for IC type symptoms! – -i.e. a patient says she is urinating frequently and it hurts, no UTI is found, therefore the physician says “we need to dilate your urethra to make it easier for you to urinate” this is just creating trauma and these women do not have constricted or small urethras! It just gives the physicians something to do to try to feel like they are treating something.

The other difficult thing about IC is that is can present in different ways, i.e. it may just present as pain in the pelvis or pressure or discomfort with intercourse and she may not have bladder symptoms, therefore it is difficult for the physician to consider it may be IC, or vice versa, the patient may not have pain per se, but just bladder symptoms and is considered to just have an overactive bladder or recurrent UTIs. Bottom line is though, if those patients are questioned with things like the PUF Questionnaire, most would score positive in both types of categories enough to be considered to be high probability to have IC. The problem is the questions never get asked and the diagnosis never considered. Or if it is, the patient is sent to a specialist that actually doesn’t have an interest in treating IC and therefore again the patient doesn’t get the treatment she needs.

Since the bladder is located low in the pelvis, behind the mons, the nerves that innervate the bladder are the same nerves that innervate the vagina, the uterus, the fallopian tubes, the vulva, the labia, inner thighs etc., therefore the pain from the bladder can be referred to any of these areas and therefore again making the diagnosis of IC or bladder origin pain difficult to consider and confusing both for the physician and the patient. I.e. the patient may just have occasional bladder symptoms but pain in the opening part of the vagina all the time, and therefore the bladder is never considered as a source of that pain. additionally, many of the symptoms may start very slowly and at a young age, i.e. at 12 or 13 a young woman may start having to void 10 times s day, then eventually 12, have a UTI or two and are just told they have a “small” bladder or recurrent UTIs and the symptoms continue to get worse over a slow time and the patient never realizes that it isn’t normal to do this or feel like that. If the pain goes away with urinating, she may also get used to that, but eventually when the pain doesn’t go away or her bladder symptoms worsen (especially after intercourse or she has pain with intercourse) she eventually comes in for treatment.

2) Explain your personal pain management approach to patients with IC.

My personal pain management approach certainly depends on where the patient is in her state of the disease or pain when she is evaluated. If a patient is in severe acute pain from an acute flare, then we act quickly to try to get her pain under control and get the flare treated and her bladder calmed down. This could mean placing the patient in the hospital for IV medications and bladder instillation therapy (very rare, however if a patient is urinating blood and can barely function, this may be necessary) versus trying to control this on an outpatient basis and office treatment. We don’t believe in just giving patient’s pain medications, as that may mask the symptoms, however does not treat them. I may very occasionally utilize narcotic medications, but this is a rarity. If we find a patient can’t function without narcotics, they must be involved in a pain clinic so that this can be monitored and they get those medications from professional pain specialists. My goal is to get patients off narcotics or pain medicine and focus on the source of the problem to get their bladder lining healed therefore reducing the source of the pain.

That is why when patients are having acute pain (or chronic) I like to immediately get the patient going on instillation therapy We utilize a solution of Heparin (to heal the bladder lining-i.e. regenerate the GAG layer) sodium bicarbonate and Lidocaine (an anesthetic agent)-we do these 3-5 times for the first week or two to get the symptoms controlled then weekly. The instillations usually give instant relief. At the same time we utilize anti-inflammatory agents, and get patients on the typical cocktail of ElavilÃ?® (low dose helps to elevate the patient’s pain threshold, i.e. the level that the pain fibers fire at in the spinal cord. These nerves are super sensitize and fire very easily at very low input levels, ElavilÃ?® helps to elevate these levels so they don’t fire so easily at low levels), AtaraxÃ?® (an antihistamine) felt to help block mast cell release of histamine thought to be involved in the inflammatory reaction of IC and also is a sedative and helps patients sleep better (as dose ElavilÃ?®) and of course ElmironÃ?®-the only FDA approved medication for IC which helps regenerate the GAG layer and bladder lining. These medications may take several weeks to a few months to start working, which is why we like to start immediately with bladder instillations in the office (these instillations are not large volumes, only 25 cc is placed in the bladder). Occasionally, if we can’t get the symptoms under control we will consider cystoscopy with hydrodistention under anesthesia. Of course we ensure that we have also ruled out other pelvic/abdomen pathology that may be causing the pain, i.e. infections, pelvic masses, etc.

3) What is an IC remission and how long do they last?

I don’t know if this is a good to utilize i.e. remission. I guess my definition of this would be opposite of an IC flare which is a recurrence of symptoms. I would call a remission more of an IC control i.e. most patients I see have not been adequately treated therefore their bladder is not in a healthy state. We attempt to get their bladder in a healthy state, i.e. regenerate their bladder lining, get them to stop using bladder irritants in their diets and lives, modify diets/lifestyles, use medications as necessary etc. This may take several months to achieve this level of education and treatment but once we get the bladder lining healthier we hope this causes their symptoms to alleviate as well. How long does this last? That is a very good question that there is not a good answer to and I don’t think anyone has that answer. It can depend on many things, i.e. does a patient stop following her diet and understand she may pay the consequences? Does she try to reduce her ElmironÃ?® dose, and then get into a stressful time in her life, i.e. like a change of job, a move, and difficulty with a relationship, etc. and then go into a flare because of this? There are so many factors with IC, i.e. seasonal flares with allergies, flares with stress, diet, etc. that you can’t really say how long a remission or symptom-free state will last. I tell all patients that unfortunately we do not have a cure for IC as we truly don’t know the exact cause yet, therefore until we do, they will always have IC and they need to understand the condition and recognize flares early on and get treatment early on to avoid severe symptoms hopefully (even if they eventually get well enough to be off medications).

4) How is IC different in men than in women? Why is this still considered a “Women’s disease”?

IC in men is actually very similar to women and is felt to be very common as well, however, not understood very well, not recognized as a possible diagnosis, and therefore poorly recognized and treated. Just as women have many diagnoses that are considered prior to IC, so do men. However, the anatomy is certainly different but the same problems still exist. Most men beyond 40-50 years old have occasional bladder symptoms, i.e. increasing urinary frequency, urgency, some difficulty urinating. Some develop pain in the urethra, penis, glans, or testicles and of course infection is considered, UTIs are considered, but mostly the prostate is considered, i.e. enlarged prostate (BGH) can cause obstructed voiding symptoms and all of the above symptoms and certainly has to be considered as a cause of urinary problems in men. However, in many men the prostate is normal, not enlarged, there is no bacteria present, but they still get treatment for prostate problems and voiding dysfunction (i.e. many medications such as ProscarÃ?®, etc.) as urologists don’t consider IC in men. Men can also get overactive bladder symptoms and may need treatment for this, however, in many men with above symptoms also have IC and should be treated. Luckily they can be treated with many of the same regimens as women. Lowell Parsons evaluated men in a large VA hospital in California and found that when questioned with PUF Questionnaire, a majority of men with “non bacterial prostatitis” actually most likely had IC and responded to treatment. It is only still considered a woman’s disease because it is not recognized by physicians as a possible cause of symptoms in men, I think this is improving but certainly not even as fast as for women (which is slow as well).

5) What are the best three treatments (a drug, a procedure, and self-help) in today’s market for the symptoms of IC?

This is very difficult to answer because I strongly feel that a multimodal approach is necessary for treatment involving a combination of the following: self help and education of the disease, dietary modifications, medical therapy, procedures, counseling, pain clinic if necessary, etc. you can’t just use one thing and that is the problem with many physicians who even are considered experts, i.e. they may see the patient, do a cystoscopy and then just give the patient a medication and tell them to come back in 3 months. This doesn’t work! The patient needs to be inherently involved in understanding her condition and taking an active role in treatment and understanding that there is no magic bullet or pill that is going to cure her.

Medication Therapy – -There is not just one drug that can be used- if a patient doesn’t want to go on ElmironÃ?® then I will recommend instillation therapy and at least recommend a course of ElavilÃ?® at night which will help increase her pain threshold. I truly believe that in patients with severe IC symptoms the best drug that is going to help them in the long run is ElmironÃ?® as it is the only one that will help rebuild their GAG layer in the bladder making the bladder lining stronger and less permeable to the toxins that are causing the pain and symptoms.

Procedure – -Bladder instillation therapy as described above (typically a 6 week course: 3 the first week and then weekly for 5 weeks) – -in more severe patients if this isn’t working then I do still believe in hydrodistention in the operating room under anesthesia. This is a diagnostic tool as well as therapeutic, although I think it is a short term solution. I believe that what it does is stretch out the bladder causing trauma and injury (that is why patients will actually feel worse before better) but as it heals it lays down a new healthy bladder lining. Unfortunately I don’t think this lasts in all women and that is why other treatments are necessary.

Self-Help – -Education, by far. What I mean by this is that it is vital that the patient understands everything about her condition so that she is actively involved in her treatment. I don’t mean to brood about it or get online with others to share your misery and say how unfair life is (although this certainly can be very helpful to help you know that you aren’t alone and can share with others-but to a point). The physician is only one small part of her treatment and she is just as responsible to learn about the condition, do dietary modifications, try to control stress in her life, get counseling with loved ones if necessary and take control of the disease and don’t let the disease control her – -i.e. truly learning how to “live with IC”. Physicians don’t have the time to do all this and patients have to understand that they (i.e. the patients) are responsible for their health and their bodies. Yes the physicians should be guiding them in the right direction, but my most successful patients are the ones that do this.

6) I want to thank you for your time and help in this project. Is there anything you’d like to add about where we are in IC research?

We still have a lot of work to do in the field of IC. Mostly still with education of doctors so that they will recognize the symptoms and get patients to centers that have active IC protocols and treatment clinics for IC that take care of the needs of IC patients. I feel that unless patients go to these types of facilities they are not getting the treatment they deserve. I don’t think that all doctors (including gynecologists or urologists) should treat IC at all, because again, they don’t have the resources to be able to give the proper treatment – -but they need to just be aware of the diagnosis and symptoms and think of the disease (as should all family doctors, internists, gastrointestinal doctors etc.) so they can recognize the symptoms and get patients to the proper specialists so they can be treated properly.

The future hopefully holds bright promises for IC patients. Because of the recognition of how common of a condition it truly is, there is more and more research being done in the field to try to find the cause of the disease, better medications to treat it or possibly even cure it. Drug companies see the potential to make money (which most would say is an immoral goal) however this actually helps patients as they have money to spend and they will spend a huge amount in researching new drugs to try to find a cure.

We are currently involved in a clinical trial evaluating arginine (an amino acid, thought to help the bladder lining health) instilled directly into the bladder. IV arginine has been shown to be helpful in IC symptoms and we feel that most likely direct instillation into the bladder will also remove symptoms and is very safe as well.

Other agents we are researching that show promise are BotoxÃ?® injections into the bladder and SingulairÃ?® (an asthma medication that is a leukotriene blocker – leukotrienes are involved in inflammatory reactions) that we have seen some promising early results with oral treatment.

About Our Expert:
Robert Daniel Moore, D.O.,F.A.C.O.G.
Director Adv. Pelvic Surgery
Co-Director Urogynecology
Atlanta Urogynecology Associates
3400-C Old Milton Parkway, Suite 330
Alpharetta, GA 30005
770-475-4499 (office) 770-474-9875 (fax)
www.urogynecologychannel.com
moorer33@hotmail.com