Is PT or Stanford right for me?

[motorman]

I'm new here looking for advise on my chronic prostatitis. I couldn't find anything similar to my condition in the archives. I'm 54 years old and first got prostatitis in 1980. 2 weeks on floxin gave me a full cure. I got it again in 1985, 1990, 1995, and 2000. Floxin gave me a full cure each time except in 2000 it took 7 weeks instead of 2 or 3 weeks. In April of 2004 I got it again and floxin and other antibiotics no longer worked. I was on them for 2 years and mostly in bed and severely depressed. I went to USC, UCLA, and Loma Linda and was told nothing could be done. Last year Dr Scott Zeitlin from UCLA called me and if I could join his Lyrica study. I'm glad I did because it helped me tremendously. It didn't help on my inflamed prostrate that much, but it took away my depression and enabled me to get back to work. I now have energy to go out and do things. I was wondering if my next step toward a cure would be PT or Stanford since I've built up an immunity to antibiotics. My pain is an inflamed golf ball in the rectum which never goes away after more than 4 years. Pain is most intense 12 hours after ejaculation. Semen is a bright yellow which I've read is a seminal vesicle infection. Every time I got prostatitis it was caused by anti-anxiety meds that stopped up my urine flow. Could urine backflow into the prostate have caused this?

[garyholc]

Hi

Have you previously tried any PT, any stretching or relaxation techniques. These help many of the guys on here, including myself in particular the internal PT working the trigger points. My first step would be to go and see a PT and be checked out, you might be surprised just what they come up with, and the benefit you might find from having a few sessions with them. By the way, would help us all if you fill in your signature so we can all familiarize ourselves with your condition when reading your posts.

As for using the word cure, in the chronic prostatitis / chronic pelvic pain syndrome world, the word isn't used as such, but we look more upon making this condition so negligible in its effects on us day to day that we no longer think about it. Maybe the word "manageable" would be better, i.e. having the knowledge and skills to self treat ourselves when suffering from a flare. When people start to become lazy, go back to their old habits, usually the symptoms start to come back.

Regards
Gary

[webslave]

2 weeks on floxin gave me a full cure. I got it again in 1985, 1990, 1995, and 2000. Floxin gave me a full cure each time except in 2000 it took 7 weeks instead of 2 or 3 weeks.

It's not a full cure if the condition keeps returning. Have you ever had a culture done?

In April of 2004 I got it again and floxin and other antibiotics no longer worked. I was on them for 2 years and mostly in bed and severely depressed.

That's not the picture of chronic bacterial prostatitis. So even if you once had a bacterial condition, it's no longer bacterial. It's now CPPS.

[Lyrica] helped me tremendously.

That proves my point.

I was wondering if my next step toward a cure would be PT or Stanford since I've built up an immunity to antibiotics.

If you can do it, Stanford is a no-brainer. It's far and away the best solution for someone in your position.

Could urine backflow into the prostate have caused this?

If you have the sort of malformation of the urethra or a stricture that can cause backflow, your uros would have found it by now.

[superuse]

Every time I got prostatitis it was caused by anti-anxiety meds that stopped up my urine flow.

Obviously if you've had an anxiety disorder or problem (which chronic prostatitis / chronic pelvic pain syndrome is heavily correlated with) since 1980 or so that has been treated with meds that would seem to triple confirm webslaves point. OCD is the most common.

Any correlation with my signature at the bottom, (long hours of sitting at work, a relationship with a bike, motorcycle,running shoes,weight plates) would quadruple confirm such a diagnosis. Do a search on "golf ball" for that symptom on the site and spend a week reading the messages.

[motorman]

Thanks for replying. I do have anxiety problems from mild autism (Aspergers) which has caused me to freeze up during first time sexual encounters. I had abnormal(delayed) ejaculation which did not feel normal. I would wake up in the morning with an inflamed golf ball in the rectum and much pain in the tip of the penis. This is how I got it the first few times. The more recent times came from not being able to urinate. One time it was 2 days on Effexor, another time it was ephedrine, another time it was hydroxyzine (Vistaril, Atarax). If I ever get better I will never take anti-anxiety meds again. I have had a urologist give me a massage for fluid and the count was 35 under a microscope, but no cultures. All the uros I've seen don't want to go any further. I would like to be checked for seminal vesicle infection, ejaculatory duct obstruction, chlamydia, etc but no uro ever suggested it. How do you go about getting it done? No, I've never seen anyone for PT, hoping to get info here. I see some of you guys are taking Elavil, I took it for 18 years as a sleeping pill before bedtime. It made me too tired if I took it during the day. Don't remember the dosage, but I remember cutting them little green pills in half. Thanks for trying to help me

[Jay]

Hi motorman,

The majority of people who end up on our boards do not ultimately show any evidence of infection. However, if you feel that you have been inadequately treated by your urologists, my best suggestion is to keep searching until you find one who'll listen to your concerns. Some people very understandably can't commit to certain causes or treatments (like those promoted on our site) until they 'clear out the cobwebs,' so to speak, and check for other issues on their minds. However, I would urge you to not let yourself panic or worry too much about the possibilities, as that won't do you any favors.

If you're asking how to go about having physical therapy for this, it's just a matter of finding a PT with knowledge of pelvic pain and pelvic floor dysfunction. The best options are those who can do myofascial trigger point release therapy. You can find some recommended people in the Therapists section of our forum, or someone may have ideas if you tell us where you live. Of course, there is always the Stanford/Wise-Anderson Protocol clinic, but that's not an option for some (including yours truly) due to distance or financial constraints.

Generally speaking, a good PT will probably be able to tell within the first visit whether or not you've got something they can help with. Therapy for this involves external and internal work on the pelvic floor muscles and related anatomy. It's aimed at resolving areas of restriction (trigger points) and lengthening tissue chronically shortened by tension.

Regarding Elavil, it is a popular drug among our members for a few reasons. It's a muscle relaxant, a mast cell protector, it helps with anxiety, and it can also help with frequency issues and neuropathic pain. As well, it's useful in getting a full night's sleep, which is a problem for some CPPSers. However, most take only very low doses of about 5mg or so. I took 25mg (did not titrate up) and ended up having urinary retention.

I'm not a doctor, merely a patient, but your story suggests to me that physical therapy might be something to consider. An examination by a qualified PT will do you no harm, but may open doors for you in terms of treatment.

[motorman]

Thanks for replying Jay, it's exactly what I was looking for. I live in southern Calif. so Stanford is a real possibility. If I go there would I need follow up treatment by a PT for the rest of my life? Also, what is meant when you guys have a flare-up? My pain is an unbearable hot poker in my butt that hasn't increased or decreased in pain level for 4 years.

[garyholc]

Motorman

Once you are on your way with understanding your body and what areas need work, you will find that you won't need to see a PT as regularly, and many men here find they can control their own symptoms, the longer you spend doing it, the better you get, the more the symptoms reduce, and some guys only have to do PT maybe once every 2 weeks or so. The change of attitude, lifestyle etc. is for life if you dont want this to return.

As for a flare up, in my personal experience, imagine having a month or so with very little or no pain, then all of a sudden, wham, lots of pain comes one day for no reason, lasts a few weeks, and then goes again, this is what I would call a flare up.

Gary