C. Paul Perry, MD

Once again the International Pelvic Pain Society realized a very successful meeting in Hartford this spring. 	We were able to pull together interesting and dynamic speakers from many different disciplines with refreshingly 	new perspectives on the diagnosis, treatment, management and understanding of this complex disease. This is in 	keeping with our twofold purpose of professional and patient education.
 	
 	Some particular highlights include:

 Dr. Jill Peters-Gee with a "state of our science" 		on interstitial cystitis.
 		

 Dr. Patricia Mulready's theories on diet and disease. A new 		view of what she termed "syndrome X" that may explain the many systemic symptoms of patients with chronic 		pain and fatigue.
 		

 Dr. R. William Stones brought everyone up to date on the 		science of pelvic congestion. His basic research efforts are yielding greater understanding of the pain mechanisms 		from a neuro-chemical and anatomical point of view.
 		

 Dr. Ibrahim Daoud shared his general surgical experience 		in women with chronic pelvic pain from occult inguinal hernias.
 		

 Dr. Mike Brennan gave his perspective on the use of narcotic 		analgesics for women with non-cancer, chronic pelvic pain

 Dr. David Olive brought us the latest information on using pelvic pain

 mapping under conscious sedation for the diagnosis of chronic pelvic pain.
 		

 Dr. Mary Casey Jacob gave one of the most popular lectures 		at this meeting. As a pain psychologist, she reviewed the stresses that health-care professionals experience while 		treating chronic pain patients and how to maintain our mental health in 

"Survival Techniques for 		the Physician"

If you were unable to attend the symposium, but would like to receive a videotape of these or any other lectures, contact our chief of operations, Mr. Terry Dillard, at 1 (800) 624-9676, email him at 

Articles

Once again the International Pelvic Pain Society realized a very successful meeting in Hartford this spring. We were able to pull together interesting and dynamic speakers from many different disciplines with refreshingly new perspectives on the diagnosis, treatment, management and understanding of this complex disease.

Summary of the IPPS Hartford Symposium

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 "I'm Paul Perry, Chairman of the       International Pelvic Pain Society, and we're here with Dr. Jill Peters,       who is one of our speakers today. Dr. Peters, if you'd just introduce       yourself and tell us where you're from."
       
       

 "I'm Dr.       Jill Peters, I'm a urologist in Connecticut. I'm the Director of a       continence program for Women's Health Connecticut, which is a statewide       network of gynecologists, and I practice urology."
       
       

 "As you       know, we have two main areas of focus in the IPPS, one is to educate       patients, and the other is to educate physicians. If we are going to talk       to the patients in a way that would explain to them what interstitial       cystitis is, and what some of the symptoms they need to watch for are -       how would you go about presenting that?"
       
       

       "Interstitial cystitis is a chronic problem of the bladder, and it       frequently presents with urinary frequency - normally you having to get up       at night more than two or three times, frequency throughout the day,       sometimes urgency where you have an incredible urge to have to get to the       bathroom very quickly, and often times pain. The pain may be somewhat of a       pressure, it's often described as a superpubic pressure that makes you       feel like you need to get to the bathroom. Sometimes it can be pain with       intercourse or pain in the urethra."
       
       

 "As far as       the clinicians out there - could you give us some idea about the spectrum       of disease that we see that will specifically relate to chronic pelvic       pain whenever we are investigating it?"
       
       

 "Again, as       a clinician, often times we see women or men with what we think of as a       urinary tract infection - frequency, urgency, sometimes discomfort. But       the key is if you're seeing those patients, and they're having kind of up       and down symptoms, and there's not really a positive culture - then you       should always suspect interstitial cystitis. Often times people will have       symptoms for years, and we kind of label them as chronic cystitis or       urethritis, and it's really a symptom complex that you need to think of.       Again, whenever you have frequency, urgency, and any superpubic discomfort       or pain - typically that discomfort is relieved with voiding - that's one       of tale-tell clues. Again, you just need to think of interstitial       cystitis."
       
       

 "What are       some of the other symptoms that might go along with interstitial cystitis?       Is there a problem with pain with intercourse or any other medical       entity?"
       
       

 "About       60%-70% of women may have pain with intercourse, they often describe this       kind of pain as deep inside the pelvis. Many of these people will also       have migraines or irritable bowel, a pain on the external part of the       vulva, and sometimes there are other associated problems - fibromyalgia or       joint problems. There's a lot of concomitant diseases that go along."
       
       

 "Why do       you think it is that there seems to be more women with interstitial       cystitis than men?"
       
       

 "I think       part of this has been just our knowledge, as urologists we're the ones       that primarily make the diagnosis of interstitial cystitis. It's diagnosed       first because you think of it as a possibility but in part it's a       diagnosis based on excluding other things. In men, we tend not to look for       it and to do the tests that would make the diagnosis. Men tend to get       labeled as having prostatitis or chronic prostatitis. So I think we see it       more often in women because we're looking for it more often in women, and       I think as we get further along understanding what this disease is, we may       actually see it more often in men. That's the trend that we're seeing       right now."
       
       

 "We've       talked about the symptoms that these patients may have, what about when a       patient presents at your office with those symptoms? Just kind of go       through your examination if you would, and let me know how you pick up       interstitial cystitis."
       
       

 "Usually       the patients have already been treated, for example, with recurrent       urinary tract infections and had negative cultures. I'll go through a       pretty thorough history - seeing how far back they've had symptoms. I'll       ask them if there's any things that cause a flare up of their symptoms and       often times diet, caffeine, alcohol, intercourse, or their menstrual cycle       may cause a flare up of symptoms. Those are all clues that that's what       this could be. Next, we'll have them go through and look at their       medication, and see if there are any concomitant diseases. Examination is       basically like a typical gynecological exam, we're looking carefully to       see if there's any tenderness along the urethra, any tenderness in the       vagina. Sometimes women can get little cysts or diverticulum that can       mimic this, and normally the exam is really pretty normal other than some       mild tenderness in the pelvic area. Urinalysis is normal in the most part,       so what we'll do is give them some dietary instructions, and have them go       home and do what's called a "voiding log" to try to see if       they're voiding small amounts or large amounts of urine throughout the       day. Then based on that, if there's a high enough index of suspicion,       we'll usually then bring them in for a test which is typically done under       anesthesia. It involves looking inside the bladder and actually distending       the bladder, and that's how we usually will make the diagnosis."
       
       

 "Is there       any one physical finding that you can think of that would be the most       typical for interstitial cystitis?"
       
       

 "Not       really, it's not something that you can pin point on physical exam, it's       usually the history more than anything. If you really talk to patients,       some people will have frequency because they'll leak if they don't go to       the bathroom very often. With interstitial cystitis, it's almost like this       nagging pressure feeling in their pelvis that makes them feel like they       have to go to the bathroom, and if they don't go - if they're stuck in       traffic - they'll actually start having pain. Characteristically, that       discomfort or pain is relieved once they urinate. So because they only get       relief with voiding, what they tend to do is then start voiding very       frequently because that's the only time that they really feel somewhat       good. That's a classic kind of picture but there's a lot of variation       along the line."
       
       

 "What do       you think about the association between the pelvic floor dysfunctions and       interstitial cystitis - why is that seen so often, and what can we do       about that?"
       
       

 "Pelvic       floor dysfunction is basically a muscle spasm of the pelvic muscles that       kind of are the floor of the pelvis in which the bladder sits. I use the       analogy if someone has a herniated disk in their back, the body's response       to that pain in the disk is a paravertebral or a muscle spasm next to the       spine, and that's a protective defense that we have that stabilizes the       back and keeps the back from moving, and it helps the pain. In the pelvis,       if you have pain whether it be from the bladder or from endometriosis or       any entity that's causing pain even a bladder infection, you'll get a       response - a natural response - I think, in some cases of a pelvic muscle       spasm. And we see this after hernia operations, people have surgery then       they can't urinate because the muscles are in so much spasm as a response       to the pain. So I think it may be the pelvic pathology - the       endometriosis, the interstitial cystitis, the whatever that causes the       pain that then the body reacts by having this muscle spasm. That could be       one scenario. We do see children that almost learn to not relax their       pelvic muscles and become very dysfunctional at an early age."
       
       

 "In your       experience, what treatments would you propose for a patient, and how would       you present their course of therapy? Do you tell them that you have X% of       a chance of being cured or how do you establish that?"
       
       

       "Interstitial cystitis is a disease that we don't know what causes       it, and we don't have a cure at this point. There are maybe about maybe       10% of people who will have their symptoms spontaneously go away as oddly       as it comes but for the most part, people with interstitial cystitis will       either have lots of pain and very little frequency or they'll have lots of       frequency and very little pain. The people that have lots of pain will       tend to use medications such as amitriptyline or Elavil - things that       focus more on pain. There are medications available to help to restore the       lining of the bladder and make the lining more healthy. People that have       lots of frequency, on the other end of the spectrum, with less pain will       tend to focus more on the frequency, and medications like DMSO that go       inside the bladder, and Elmiron which is a tablet that you take that helps       to restore the protective barrier on the lining of our bladder - that       works quite well. There are many different treatment options, and the key       thing is that each person's a little bit different, and they're on       different points of the spectrum - so we individualize it quite       honestly."
       
       

 "Dr.       Peters, thank you very much for being here on 

,       and we thank you for speaking at the IPPS meeting today. I'm sure you'd       want to acknowledge that there is hope for patients with interstitial       cystitis."
       
       

       "Definitely, we're spending an incredible amount of money on research       right now. There's great hope that within the next couple of years       actually, we will have this thing figured out and hopefully have a cure       for interstitial cystitis."
       
       

 "Thank you       very much."
       
       

OBGYN.net Conference CoverageFrom International Pelvic Pain SocietySimsbury Connecticut - April/May, 1999

Interstitial Cystitis

 "Good morning, we're here at the Pennsylvania Inn in the greater Hartford area, it's our annual International Pelvic Pain Society meeting. We have this morning, Dr. John Gibbons, with us who is speaking on the topic of vulvodynia here at our conference. I'm Paul Perry from Birmingham, Alabama, and I'm Chairman of the Board. Dr. Gibbons, I'd just like to ask you a couple of questions. First, as you know, our main thrust is public education regarding chronic pelvic pain and professional education. From a public education standpoint, if you want to speak to the women in general about vulvodynia, the concept, and what it is - how would you explain it?"



 "Vulvodynia is a poorly understood chronic condition that involves pain in the genital area of the female. It can be divided into several categories - dysesthetic vulvodynia is the professional term for the subset of these conditions characterized by unexplained constant burning pain. Another subset is vulvar vestibulitis, and in patients whose condition is solely limited to that aspect of the broad category of vulva pain, in those patients, their complaints are pain on touch or pressure so that insertion of tampons or sexual relations become exquisitely painful and finally impossible."



 "You've seen from a professional stand-point that many patients will sort of fall through the cracks, so to speak, because the diagnosis is missed?"



 "Absolutely, the patients that I see have characteristically been to two, three, four, sometimes five or six specialists attempting to get help for this condition. They have been told that they have chronic yeast infections. Some of them have been told that they have a psychosomatic disorder; they have seen therapists. They have gone through every imaginable category of allied health provider trying to seek some understanding of their condition. Often they are rejected by their families; there's usually tension in the marriage because of the sensitive and interpersonal nature of their complaints, so that these women are close to desperate by the time they reach a knowledgeable health professional."



 "Do you also think that the professional care of these women could be improved if we could educate the physicians who are caring for them to pick up one or two clues in the history, or do one or two things in the physical examination that would tip them off to the diagnosis, and get them on the proper course?"



 "I think undoubtedly. I think the first thing is to recognize that this collection of symptoms that we know in medicine as a syndrome does exist. While we're not clear about causes, we are clear about the existence of the problem. We're clear about the impact that it has on our patients, and we have a list of accepted treatment modalities that can be applied with varying degrees of success - but we can certainly help these women. The first step for the physician is an appreciation that the problem does exist, an understanding of how these women present, and what physical finding are or are not present. And finally then, an understanding of what treatment modalities are available."



 "What do you think would be the key as far as physical diagnosis is concerned?"



 "Most of these women have very few physical findings. As a matter of fact, the women with dysesthetic vulvodynia - I apologize for using that big word - are those women are the patients who have constant burning discomfort in the area of the external genitalia and often in the areas surrounding it, the so-called "saddle" area where the body would come in contact with a riding saddle. Those patients have almost no physical findings. They are perfectly normal in every aspect of examination. Women who have vestibulitis, on the other hand, have very few visible physical findings but always have exquisite tenderness of those delicate tissues at the entrance to the vagina when those tissues are lightly touched with a Q-tip, for example."



 "Let's talk about that Q-tip test for just a minute because I think that probably is the most neglected part of the physical examination in these women in causes of diagnosis of vestibulitis to be missed more often. Could you give us a little idea about where the examination should be taken?"



 "Of course, the area that is in question here is known as the vulvar vestibule; vestibule is a familiar term - the entry way. This area of the body is demarcated by a line between the labia majora - the larger lips, and running down the base of the labia minora - the smaller lips, so that the tissue inside those smaller vaginal lips extending upward toward the hymen and including the hymen is what we refer to as the "vestibule." That area of the body also includes the urinary meatus - the outlet from the bladder and various glands that surround those structures. The physician then in examining that area uses a cotton tipped applicator, which is simply a Q-tip. Some physicians prefer that it be wet and others just take it dry. The secret though, is very, very light pressure along specific points in that area and where there is tenderness, asking the patient to characterize the tenderness on a scale of 0-10, whether it's no pain or exquisite pain and then plotting that on a diagram. Most physicians will find that in women with vestibulitis, the tenderness is most pronounced just below the hymenal margin and around the orifices of the so-called "Bartholin" gland ducts."



 "You know that's one of our crusades, Dr. Gibbons, is to try to get every physician who care for women, that when a women comes in with that complaint, to do the Q-tip test because if you don't do it, the diagnosis which can be totally debilitating will be missed. Let's turn just a little bit down to treatment of these different conditions. I know vulvodynia is a fairly broad category, so let's think primarily of the dysesthetic vulvodynias first, and give us some idea about how you approach that in your treatment."



 "The mainstay of treatment for women with dysesthetic vulvodynia aside from the usual measures that we take in all of these patients to avoid vulvar irritation, and to get irritants and allergens out of the picture - and those are general measures of vulvar hygiene. The mainstay of treatments for these women is in the use of tricyclic antidepressants, not because we think that these women are depressed but because we know that these drugs are effective in various pain syndromes, such as the neuralgia that women get after an attack of shingles. So that these drugs, I think of all of the pharmacologic agents that have been composed for this syndrome are the most effective, and I would say that's the mainstay. There are other drugs and techniques that can be used. I want to mention particularly - biofeedback, which I think is achieving more and more respect as a modality of therapy that can be terribly effective by itself but even more effective if combined with other measures."



 "Great. What about vulvar vestibulitis? We see a lot of different treatments; I think one of that is because the ideology is so confusing, and maybe, mostly factorial. But do you have a regiment that you go through in your practice?"



 "It really depends very much on the presentation of the woman. I think the first thing is to make sure that all the measures are taken to exclude other causes for the pain. So we have to be sure that there's no dermatitis there, that there's no vaginitis or vulvovaginitis, that there's no other cause for the signs and symptoms that you see this woman exhibiting. Once that's been ruled out, I think in vestibulitis, one - get rid of the allergens and the irritants, go through the list of vulvar hygiene methods with the patient. If the area is acutely irritated and some of them are simply because they've been irritated sometimes by women attempting to press the area to get rid of the discomfort, and soothing compresses can be applied. So there's a list of easy things that can be done at first. There are two really accepted treatments that seem to be specific for vulvar vestibulitis. To mention the first, interferon injections which were described by Benson Howards/Hollards from Hartford here about ten years ago as being extraordinarily effective, have still been found to be, perhaps 50% effective in the treatment of groups of these women. It is not an easy regiment to follow; it involves three injections right directly into that area per week, for a 4-week course. Aside from some local discomfort, there may be constitutional or systemic discomfort associated with at least the early injections. Of even more success, but obviously a step that takes great consideration, is the surgical removal of the tissues that are involved. We refer to that as a U-shaped vestibulectomy with perineorrhaphy, and it involves a removal of a crescent-shaped piece of tissue, basically the lower two-thirds of the vestibule including that portion of the hymen, undermining or freeing up the back wall of the vagina and then bringing that down to cover that surgical defect. The operation is very effective in carefully chosen cases. In my own experience, some 75% of women in a carefully selected series will have complete relief, another 15% will have enough relief so that they are back to functioning and back happily in their personal relationships, and there's about a 10% failure rate. Bornstein's group from Israel reports in the pure vestibulitis patient an even higher success rate with surgery. But I have to emphasize how carefully these patients must be selected before entering into that sort of radical therapy."



 "Dr. Gibbons, we really appreciate you being with us this morning, and as one that has benefited from your experience, and we want to be thanking 

 for allowing us to share this with our other colleagues. Thank you very much."



OBGYN.net Conference Coverage From IPPS - Simsbury Connecticut - April/May, 1999

Vulvodynia

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OBGYN.net Conference CoverageFrom IPPS - Simsbury, Connecticut - April/May, 1999

C. Paul Perry, MD

Articles

Summary of the IPPS Hartford Symposium

Interstitial Cystitis

Vulvodynia

Discussion of the Future of IPPS and the Care and Treatment of Women with Chronic Pelvic Pain