A Harvard expert discusses insights into chronic pelvic pain syndrome

An interview with Michael O’Leary, M.D., M.P.H.

Dr. Michael O’Leary, a urologist at Brigham and Women’s Hospital and an associate professor of surgery at Harvard Medical School, is one of the world’s foremost authorities on chronic prostatitis. Most men he treats suffer from chronic nonbacterial prostatitis, also known as chronic pelvic pain syndrome.

By the time most new patients arrive at Dr. O’Leary’s biweekly clinic at Brigham and Women’s, they have already seen multiple physicians — general practitioners and urologists — without finding relief. While Dr. O’Leary has no “magic” solutions — there are none for chronic pelvic pain syndrome — he can offer options other doctors may not be aware of. As one of the leading researchers involved in the Chronic Prostatitis Collaborative Research Network (CPCRN) Study Group, a consortium funded by the National Institute of Diabetes and Digestive and Kidney Diseases, Dr. O’Leary knows what new treatments are being tested in clinical trials and what strategies have worked for the men he treats. (For a sampling of studies, see “Key findings from the CPCRN.”)

In this interview, Dr. O’Leary explains what management strategies he offers to his own patients, what nontraditional techniques might be worth looking into, and why he thinks it’s time to change medical thinking about chronic pelvic pain syndrome.

Symptoms and diagnosis

At what point do men make an appointment to see you?

Most men tell me they had symptoms for three or four weeks before contacting their primary care physician, who inevitably prescribes an antibiotic. That invariably doesn’t work. So they go back to the primary care physician, who refers them to a urologist, who refers them to me.

Many urologists, to be perfectly blunt, don’t have a lot of interest in chronic pelvic pain syndrome because it’s very frustrating to treat. And yet it’s a very common condition. It accounts for roughly 8% of visits to U.S. urologists.

What are the symptoms that prompt patients to make an appointment with you?

Most patients come in complaining of pelvic, perineal, or genital pain. They may also have difficulty urinating, or pain while urinating. And so the combination of pelvic pain and voiding symptoms usually indicates that the problem is chronic pelvic pain syndrome.

What about ejaculatory disturbances?

Sexual dysfunction of some sort, including ejaculatory problems and erectile dysfunction, is pretty common in chronic pelvic pain syndrome. Many patients tell me they experience pain after ejaculation, rather than during ejaculation.

What general age group is affected?

NIH data we published in 2006 indicated that the median age was 42, meaning that half the men were younger and half older. So this problem affects relatively young men.

What’s the best way to diagnose chronic pelvic pain syndrome? Should a patient expect a urine culture and prostate massage culture?

Most of us don’t do urine cultures or prostate massage cultures anymore. We published data that pretty much ruled out that chronic pelvic pain syndrome is bacterial, and therefore it probably isn’t helpful to do a Meares-Stamey test. And the clinical reality is that nobody does that test anyway, because it’s time-consuming and difficult to do.

Do you test PSA levels in these men?

No, I think that’s a mistake. Some men probably do have some degree of inflammation, and their PSA is going to be elevated. That might lead to a prostate biopsy and other tests. I think your readers need to know that PSAs need to be done very judiciously if prostatitis is suspected or diagnosed. Most of these men are relatively young, and they probably don’t have prostate cancer. And as far as we know, there’s no increased prevalence of prostate cancer in men with chronic pelvic pain syndrome.

Some studies indicate that the quality of life of someone with chronic nonbacterial prostatitis is similar to that of someone who has congestive heart failure. Why is that?

I think it’s a combination of both the symptoms and the pain. What impresses me most about men who have dealt with this for a long time is how debilitated they are by pain. They learn how to manage the urinary symptoms, but managing the pain is very difficult, and in some cases it absolutely destroys their lives.

I run a clinic every other Thursday. In some ways it looks like a clinic for men with widely metastatic prostate cancer. These guys are in pain, they’re debilitated, they’re miserable.

Does this condition evolve from urinary symptoms to pain, or is it the reverse?

For most patients, over time, urinary symptoms tend to become more manageable, but not the pain.

Does anyone get better?

Yes. We conducted a study for the NIH, in which we followed men with chronic pelvic pain syndrome for two years, and found that two-thirds of them got better over time, at least according to a symptom assessment questionnaire they filled out. And about one-third said they felt moderately or significantly better. I try to advise patients, when I first see them, that “This is a chronic condition, but not necessarily one that you’re doomed to have for the rest of your life.” There’s a better-than-even chance that these symptoms will go away as mysteriously as they arrived.

Management options

What sort of treatment do you recommend for your patients with chronic nonbacterial prostatitis?*

I advise them that antibiotics have very limited efficacy in this condition. I don’t object to people having a trial of antibiotics, but I don’t necessarily expect them to improve.

What antibiotic do you prefer, if you prescribe one?

A quinolone is usually used. Something like ciprofloxacin (Cipro) or levofloxacin (Levaquin).

And if that doesn’t work?

It depends on how long a patient has had symptoms. By the time most men with chronic nonbacterial prostatitis come to me, they’ve already been on antibiotics for weeks on end, prescribed by the referring doctor.

So I usually suggest trying an alpha blocker. It’s an off-label use, because we’re not treating BPH. But sometimes I’ve seen it work. I usually offer them alfuzosin (Uroxatral).

Why that one? Why not one of the other alpha blockers?

First, because there are preliminary data that alfuzosin is better than any of the others. And second, because we’ve got pretty good data that indicate that the best of those other three, which is tamsulosin (Flomax), doesn’t work for chronic pelvic pain syndrome. Other studies have documented less-than-great efficacy with doxazosin (Cardura).

Why do you think alfuzosin may work, when the problem isn’t BPH?

I honestly don’t know. I think that when alpha blockers do work, they act not just on the prostate, but on the whole pelvic floor.

That’s one of the reasons I think we have to change our thinking about what this condition is. This is not an isolated-to-the-prostate condition. And medications that work, like the alpha blockers, may work by having extra-prostatic activity.

What is your experience with NSAIDs or other anti-inflammatory medications?

I don’t know that anti-inflammatories work in this condition by reducing inflammation. They can reduce pain in many men with this condition. But I’ve been reluctant to prescribe them for extended periods because chronic use of NSAIDs can cause gastrointestinal bleeding and other side effects. And there aren’t any controlled trial data that I know that have shown any real efficacy for chronic bacterial prostatitis.

Are antidepressants or other psychotropic drugs ever helpful?

I don’t have experience prescribing psychotropics. I’m also very reluctant to get involved in narcotics for this condition, because of risk of addiction. But I do refer patients to pain clinics, to experts at handling chronic pain.

Anything else that you try?

We sometimes recommend a pudendal nerve block,* which one of the radiologists in our practice has done, under CT or MRI guidance.

Could you explain what that is, and why it might help?

It’s an injection that combines a long-lasting anesthetic and a corticosteroid. The anesthetic blocks pain signals from a nerve located in the perineal area, near the prostate, and the corticosteroid has anti-inflammatory effects. The theory is that this works because a trapped or aggravated pudendal nerve can cause symptoms seen in some men with chronic pelvic pain syndrome.

Researchers at the Mayo Clinic and elsewhere have reported that these nerve blocks help about 65% of patients who have symptoms of pudendal nerve entrapment, which include things like pain that gets worse after sitting but is relieved upon standing. Pain may also occur when flexing the hips, such as doing sit-ups or having sex. In fact, one theory about why ejaculation pain may occur is that the nerve becomes aggravated with pelvic movements during intercourse.

What do you advise about lifestyle changes? For example, do you advise against bike riding, or sports that put specific pressure on the perineal floor?

Some of my patients tell me that sitting for prolonged periods of time, particularly in a bike saddle, makes symptoms worse. But I saw a patient the other day, a serious bicyclist, who told me that the only time he doesn’t feel pain is when he’s on a bike. And that’s probably because as a serious bicyclist, that’s the time when he feels most relaxed.

All these concepts that we used to have about this condition, we need to rethink. That spicy foods, for instance, will aggravate this. There’s just no basis in fact for most of these beliefs.

Do you recommend any complementary therapies?

Some of my patients have found acupuncture helpful. There are some data that herbal remedies might help. One small randomized controlled trial found that quercetin, a substance found in some vegetables,* showed some efficacy.

There are a lot of different ways to get quercetin. I actually have one patient who read that quercetin is plentiful in green vegetables. He boils broccoli, so that quercetin leaches into the water. He cools it and drinks the water.

And that helps?

He says it does.

Therapies under investigation

Are there any clinical trials worth mentioning?

The NIDDK has several clinical trials currently under way.† One I’m watching closely is comparing the alpha blocker alfuzosin versus a placebo. As I mentioned earlier, preliminary data indicate this might be the most effective alpha blocker for prostatitis.

Another study worth noting is evaluating pregabalin, or Lyrica, which is an anticonvulsant that also may be effective in treating nerve pain. And there’s a pilot study under way to determine whether we can compare therapeutic massage with something known as the Stanford Protocol, which involves manipulating myofascial tissue to release trigger points.

Does the Stanford Protocol involve physical manipulation of the perineal muscles?

It’s physical, but not just of the muscles. Most of it is transrectal. The idea is to release tension in so-called trigger points. I’ve had a number of patients who’ve undergone this therapy, who say they feel dramatically better afterward. Many of these men who have learned to do biofeedback and muscle relaxation tell me that they can actually feel their pelvis becoming less tense, and that their symptoms improve.

Could massage accomplish that as well?

No. And it’s important to point out that prostatic massage per se is not helpful. Another technique developed by a physician in the Philippines is known as the Manila Protocol or the “Feliciano method,” in honor of one of the doctors that developed it. This involves vigorous and lengthy prostate massages, combined with antibiotics. One of the advocates of this method has been a consultant to a prostatitis clinic in Arizona. But there are no data to support the Manila Protocol. I’d advise people to be cautious about it.

How would readers who are interested find a physical therapist who’s trained in the Stanford Protocol?

There aren’t many physical therapists who have been trained to do myofascial trigger release. I found the right people by asking around in the physical therapy community. Your readers have to ask specifically about myofascial trigger release. That’s the “buzz phrase” that lets physical therapists know what you are asking about.

Any basic research worth mentioning?

There’s an interesting theory I’m hoping to pursue with a group here in Boston, at the Forsyth Institute, which is probably best known for its research on the mouth and cavities. They have technology that enables them to study and measure very small quantities of DNA and RNA in bacteria, including that in prostatic fluid. Because, of course, one theory about chronic pelvic pain syndrome is that it’s really a bacterial disease, but we don’t yet have the capability to measure the bacteria because they can’t be cultured. So this may be another way to get at the cause of this condition.

Redefining the condition

How do you view chronic pelvic pain syndrome?

Frankly, I don’t find the NIH classification for chronic pelvic pain syndrome all that useful, clinically.

Given the constellation of symptoms that patients with chronic pelvic pain syndrome present with, I think we really need to change our thinking about this disorder. It may not be related to the prostate itself. It may, in fact, originate in support structures around the prostate — the muscles, ligaments, and nerves.

Do you agree with those researchers who think chronic pelvic pain syndrome might be an overactive pain syndrome, where someone is so highly sensitized that even tension can trigger it?

Yes, I think that’s pretty accurate. Most patients who have this condition will tell you that when they’ve learned how to manage it, they know that their flares come during more stressful periods in their life, and things that help them reduce stress help to relieve symptoms.

Any final thoughts?

I think there are some promising new therapies, though it’s too early to tell how effective they are. But I’m encouraged, and I think men with this condition should feel encouraged too. It’s not hopeless.