Kenneth M Peters, MD is the Chairman of the Department of Urology at Beaumont Hospital in Royal Oak, Michigan. An NIH-funded researcher, he has performed dozens of studies on interstitial cystitis. An international expert on IC, chronic prostatitis and chronic pelvic pain, he is one of the most popular clinicians in the USA for his encouraging bedside manner and point of view.
What’s interesting about the IC movement today??
The progress of IC research! Many studies that we were hopeful would work for IC simply have not worked and now we have an idea why. It’s all about phenotyping. Many patients sent to our clinic with a diagnosis of IC hurt somewhere between the belly button and their knees but, in many cases, it’s not really their bladder that’s the problem. It’s often their muscles, nerves or perhaps bowel issues. To me, what’s really important about a clinical trial is to understand what type of patients should be enrolled in the trial.
Patients with classic “Interstitial cystitis” (i.e. Hunner’s lesions) are a good target for a clinical trial and you can measure the results, such as the size and the appearance of the ulcer. So, if you’re studying a bladder specific treatment, Hunner’s patients are a good way to measure its effectiveness. In the LiRIS study for Hunner’s lesions, we clearly see improvement and I’m excited about the new clinical trial going forward this year. That’s the easy IC. No one can dispute that this is a bladder disease.
Unfortunately, that’s the minority of patients. We have this other, much larger, group of patients with pain, urgency and frequency caused by something outside the bladder, such as the pelvic floor muscles. If I put a pelvic floor patient in a “bladder treatment” trial, the chance of me being successful is zero.
My sense is that we’ve become smarter in the last ten years and that the companies trying to develop new treatments and do clinical trials are trying to target them more effectively. When you look at the old NIH trials that we did, we were putting patients in the study who if you made their bladder perfect, they’d still have pain. It’s hard to win in that situation. The LiRIS® and the Lipella studies are working hard to enroll the bladder centric patient rather than pelvic floor or a systemic hypersensitivity disorder patients.
How common is pelvic floor dysfunction in your clinic?
Eighty percent of the patients we see who have been on traditional bladder treatments jump off the table if you put your finger on their pelvic floor muscles. We’ll use pelvic floor physical therapy, vaginal valium, trigger point injections and, if necessary, nerve blocks to reduce that muscle tension. If at the end of the treatment their pelvic floor has improved, but they are still having bladder problems, then we’ll treat them with bladder specific therapies.
Most of these patients have never had a pelvic floor exam. They’ve been given Elmiron® and other therapies and labeled with “interstitial cystitis.” I don’t think that does patients any good. When a patient visits our clinic, we evaluate them using a multidisciplinary approach, identify their triggers and treat each one to improve their overall symptoms.
Why do so many patients not believe that their muscles can be part of the problem?
Patients are often resistant to the idea. They’ve been invested in the label of “interstitial cystitis,” often for years and have gone to multiple clinicians who has reinforced this diagnosis. They simply don’t understand that the pelvic floor muscles can trigger many of the symptoms that they think of as IC. Once you convince them to be treated, it is gratifying to see how much they improve.
Why are so many doctors not diagnosing pelvic floor dysfunction?
Doctors don’t know about it. Our medical training did not include the role of the pelvic floor and how it influences the other organs in the pelvis. When we give talks about pelvic pain to clinicians and we explain how to do an appropriate pelvic floor exam, you can see the lightbulbs go off. When you see them in the future they’ll say, “You’ve really changed our practice.”
“We have this other, much larger, group of patients with pain, urgency and frequency caused by something outside the bladder.” —Dr. Ken Peters
I think many doctors who see patients with pelvic pain are quick to label them with IC and begin bladder treatments. The same is true for chronic prostatitis. When doing a prostate exam, I tell doctors to swing their finger off the prostate and to the pelvic sidewall to check the muscles. That’s where the problem usually is for men diagnosed with chronic prostatitis who don’t respond to traditional prostate treatments.
What’s your approach for patients who have IC and the other common related conditions, such as IBS and vulvodynia (aka. Functional Somatic Syndrome)?
I consider this a hypersensitivity disorder. Everything is sensitive, including the bowel, skin, vulva, etc. In these patients, their nervous system is “wound up” and our job is to unwind it. We try to identify every pain trigger and then work to reduce them. A multidisciplinary approach with specialists dedicated to improving these triggers is key to successfully treating the symptoms. Expectations are a key to success. I tell every patient that our goal is to obtain a meaningful improvement in their symptoms, but as with any chronic pain disorder, making them pain free is usually not achievable. With chronic pain disorders, everyone has good days and bad days. We hope they have many more good days than bad ones.
Integrative medicine has become an important mainstay in the treatment of these patients. I’m a big fan of Reiki therapy, acupuncture, guided imagery, Yin yoga and meditation. Many of these patients find stress as a major trigger of their symptoms. Their pain disorder has impacted relationships with their family and friends, led to social isolation and often depression. Referral to a pain psychologist skilled in cognitive behavioral therapy can improve their coping skills and significantly enhance their quality of life.
I do agree with Chris Payne MD who said that you have to be very careful with these patients. The worst thing you can do is something aggressive and/or invasive that could “wind up” their nervous system and cause more pain.
It is frustrating that after all these years, patients still see 5 or 6 doctors and are given multiple ineffective treatments, without getting a comprehensive evaluation of their pain disorder. As a medical profession, we need to do a better job. In these complex patients, we must think outside the bladder and identify and chip away at all the pain triggers. At Beaumont, we are pretty good at being able to think outside the box. Helping patients that no one else has been able to help is very gratifying.
Are you treating many pudendal neuropathy patients?
I’ve been seeing so many more patients recently. Damage to the pudendal nerve can cause terrible pain, urgency, frequency, bowel and sexual dysfunction. Sometimes there is a trigger such a bike riding or trauma, other times it just seems to happen. They may also have associated PGAD (persistent genital arousal disorder) that can be debilitating. We’re doing a good job of identifying the pudendal nerve as the trigger. A pudendal nerve block can be both diagnostic and therapeutic. Pudendal nerve blocks, trigger point injections and pelvic floor physical therapy with intravaginal myofascial release often will reduce the symptoms. For patients not having a sustained improvement in symptoms, we will offer pudendal neuromodulation with an implantable stimulator. Many patients (80%) will see a marked improvement in their symptoms. Unfortunately, not everyone responds, but when it does help, the improvement can be striking. In general, I am not a fan of pudendal nerve entrapment surgery. It is a very big procedure with little published data on success. I believe we should stimulate before operate on the pudendal nerve.
The biggest challenge confronting patients today is simply the cost of therapy. Many patients simply cannot afford medications and/or treatments. What suggestions do you have for them?
This is where phenotyping is so helpful. Identifying the triggers of pain and focusing the resources on these triggers will give the biggest bang for the buck. Labeling someone with interstitial cystitis and giving Elmiron®, a drug with limited efficacy and high cost, will not help a patient if their pain is driven by pelvic floor dysfunction or pudendal neuropathy. Clinical trials are another avenue for underinsured patients and may provide them