Gmccormack's case

[gmccormack]

Hi All,

I have been battling with what has been diagnosed as Non bacterial prostatitis for 2.5 months. I have taken Cipro which initially cured my symptoms and they immediately came back. I was then prescribed 8 weeks of Bactrim which I am still on, I think it has helped a bit but it certainly is not cured, I realize the anti inflammatory effects.

It has been a blessing and curse that I have 5 physicians in my family, they all keep telling me the pain will go away eventually and this disease is extremely common. Two of them claim they even had it in Med school and in 6 months it had cleared. They all have never heard of chronic prostatitis / chronic pelvic pain syndrome and changed the subject when I start questioning them on trigger points.

My self treatment so far has been Quercetin, acupuncture, and I am now seeing a psychiatrist to work on anxiety.

Symptoms:
Pelvis pain, comes and goes
very weak urine flow
light lower back pain
pain in urethra and tip of penis
testicular pain, pain level waxes and wanes

In the morning I have virtually no pain, which leads me to believe it is muscle related since they are the most relaxed at this point. As soon as I urinate the pains return.

All this pain was very severe at the onset and it has gone down to a point yesterday when I thought I truly was close to being pain free, but today the pain is worse. My question is, do most members agree that for the vast majority of sufferers the pain goes away in time? Surely with 95% being non bacterial and over 2 Million men diagnosed with this each year it must go away for most unless this condition would be more known.

Secondly, do you think I should make the trip out to California this early in the game or should get a PT around my hometown of Boston?

I must thank you all, I recently found this site, and it has given me a lot of hope, for awhile there I felt extremely confused and hopeless.

[carld]

Surely with 95% being non bacterial and over 2 Million men diagnosed with this each year it must go away for most unless this condition would be more known.

Man if I had a dollar for everytime I thought that or read someone saying that over the years....

Welcome...

You have classic CP/CPPS symptoms...

Stop taking the AB's...you don't have an infection

Try Aleve (naproxen) as needed

Get your anxiety under control through cognitive work and consider low dose Elavil 5 to 10mg

keep taking the quercetin...good move...

Don't talk to your family of doctors anymore about this...They clearly are cluless

Give Dr. Wise a call ( cool guy) and jumping on this early...say after 3 - 6 months w/ no improvement...Stanford would be a good call if you can afford it. Learn self internal work through a good PT in your area..Call Dr. Wise for that info as well.

Also find a PT like you said in your area for pelvic floor dysfunction.

Start stretching and relaxing nightly and relax the pelvis...drop it as if to urinate but don't urinate. Do this often all day long. It will feel awkward at first but it will help.

Be well and read up in this forum...the tools are here to help you slowly recover. No magic bullet here. Time and hard work and life style changes.

Best, Carl...

[webslave]

They all have never heard of chronic prostatitis / chronic pelvic pain syndrome and changed the subject when I start questioning them on trigger points.

I recently purchased the doctors' "Bible", Harrison's Principles of Internal Medicine. In it, CP/CPPS is given only passing mention (less than half a page) and is said to be bacterial! I was shocked to see that this major medical text has simply ignored CP/CPPS and not done any real updates to the section in over a decade. Disgraceful!


So once again, it seems that we patients must do our own research and often it's up to us to educate our doctors (and then pay them!)

My question is, do most members agree that for the vast majority of sufferers the pain goes away in time?

Yes. And all that's left for many is an occasional niggle that does not register as pain, but as a slight discomfort.

Secondly, do you think I should make the trip out to California this early in the game or should get a PT around my hometown of Boston?

Sebastopol, without a doubt. But then, I do have the simplest tastes — I am always satisfied with the best. (as Oscar Wilde once said).

[Jay]

Hi there,

I just wanted to welcome you, and to commend you on the steps you've taken so far. These are early days in your condition, but I believe chronic prostatitis / chronic pelvic pain syndrome sufferers who engage the problem early recover faster than guys who've had it untreated for years.

You've made a great move in choosing to see a psychiatrist. While chronic prostatitis / chronic pelvic pain syndrome most certainly is physically real, we've observed a distinct mental component in the form of anxiety and/or OCD. The folks who panic the most tend to have the worst problems.

I'm afraid I don't immediately recall any noteworthy physical therapists in the Boston area. However, if you are in a position to attend the Stanford clinic, then seize the opportunity! It's really the best place in the country for men who choose to pursue the muscular/psychological treatment approach. Call Doctor Wise (he's really nice) and get his opinion. He'll ask you some questions about your symptoms, and if you fit the bill, invite you to attend the clinic.

[gmccormack]

Thank you Jay, Webslave, and Carl for welcoming me.

I was truly in a bad place just weeks ago and even reading the success stories sections gives me hope that I can beat this.

I do plan to call Dr. Wise next week to discuss the possibility of visiting the clinic. I agree it does appear to be the best route. My urologist insists on prescribing more antibiotics and presribed Levofloxin today, don't know if I should even give it a try.

Again, thank you all.

[Silas1066]

I just finished a round of Doxycycline--it didn't do a thing. The only reason I did it was to say to the urologist that antibiotics have been tried.

I doubt your problem is bacterial. Levaquin has nasty side-effects, so I don't recommend taking it.

Have you tried alpha-blockers? (Flomax, etc.).

[Silas1066]

I should also add that I had this in 2002 for something like 4 months. It was brutal, but it eventually went away. I went on Flomax, quit caffeine and alcohol, exercised, took supplements (Algonot and Quercetin), and eventually things got better.

I am hoping that this time around it goes away again.

The thing that bothers me the most is not the symptoms (pain in the penis, dripping, frequency, urgency), but the anxiety that goes along with it. I worry about more serious medical conditions. If a doctor were to tell me that this is simply CPPS, or chronic prostatitis, my anxiety would go down 80%. This would then reduce some of the symptoms.

So work on the anxiety--I am finishing my Ph.D. right now, and stressed out. That doesn't help.

[gmccormack]

Hello Silas,

Much like you , I am finishing my MBA which I am going full-time but also working full time. I had been getting about 4 hours sleep and extremely stressed as I am recently engaged and buying a house. I believe that stress is the main cause of this, I may have had asymptomatic CP before but the stress caused the onset. This appears to be inline with the Stanford/Wise-Anderson Protocol. As I mentioned I have two family members who have had this, both while in med school.

The fact that it went away the first time in 4 months for you is already relieving some of my anxiety.

I have had a CT scan which showed nothing out of the ordinary. I have "The Headache in the Pelvis" on order and look forward to trying some the techniques.

I look forward to hearing about you progress, Congratulation on your PhD, I will search your name for the new posts you make.

[carld]

I always say..Charge hard but in a relaxed way...

[webslave]

We, as a group, are susceptible to this condition when subjected to stress and anxiety. This is a genetic weakness, an inbuilt proclivity. We often cannot change the external stressors that affect us, but we can change our attitude to the stressors and so not allow them to have the disease-inducing effect on us. So as Carl says, charge hard in a relaxed way, or live to the full but let the problems slide off your back (as much as you can). Wise's method for doing this is Paradoxical Relaxation.

[gmccormack]

Hi All,

Does anyone know a good PT in the Boston area. I believe that it is a muscular issue for a number of reasons:

1) I press down on an area on my pelvis and I feel it in my urethra
2) Power lifted for the past 10 years
3) After I urinate it feels like my lower abdomen is squeezing/clenching
4) Even before symptoms got blown out of control, after I urinated my lower abdomen was sore for about 30 seconds
5) When I wake up there is NO pain, this must be because the muscles are relaxed.

My initial symptom was pain in a small area on my pelvis which I had thought was a kidney stone, guess again it then exploded all over my pelvis. The pain isn't as bad as bad as the at onset but unlike many of you I am still in a lot of pain almost all day.

[webslave]

viewtopic.php?f=45&t=5617&p=31868

[gmccormack]

Thanks Webslave,

I have made an appt with Ann Lavesque PT, she knew a lot about the Stanford/Wise-Anderson Protocol and has treated "numerous graduates" of the program. She said she has also spoken with Tim Sawyer on a few occasions. She did say that the psychological factor is at least 50% of getting well and still recommended I head to the Stanford Clinic.

I have called and emailed the clinic and am waiting for a response as to what they need from me and if there is availability for February.

Thanks for all your help and support

[tascam]

The combination of Librax and valium has worked well for me. Read my story and see if your case is similar.

[gmccormack]

I have been taking Elavil for 3 days and pain has seriously subsided, I still have a relatively weak flow but a lot of the pain has disapated, to the point I am no longer obsessing over the issues and haven't thought about it for a few hours which is a record for me while I've had it.

Do you think this a placebo effect? think that Elavil (10 mg) is strong enough to cause this kind of relief? or my symptoms may be getting better?

Carl - I know you have been using this for awhile and now take 5 mg, do you see big time results?