My progress (Calguy's Case)

[calguy]

If I had IC I would stop buying prostate support medicine, wouldnt need PT treatment as IC is in the bladder and would try different meds. That was what got me thinking as I spend money on all these natural herbs for prostate I was thinking I hope all this crap is really working.lol Thats funny you mentioned haemorrhoidectomy because I had PPH surgery for internal haemorrhoid where they staple inside to restrict haemorrhoid. That was about 1.5 years ago ago and I was thinking it may have led to this condition as I was squeezing my ass in pain for a while before and after surgery. Thanks guys I'm sure it is prostatitis and saw uro today and he assured me it was as he saw the inflammation. He said I'm crazy to doubt him.lol He did prescribe me some antihistamines so I will see how they work. I just had this vision of me stuck on a toilet with IC the rest of my life! And started getting paranoid it was going to get worse. I ve read a lot of guys get worried when things start to look up for them they just wait for a setback. Keep pushing forward and your right Richard I have to give this some time to see where I stand.

[kevin]

If I had IC I would stop buying prostate support medicine, wouldnt need PT treatment as IC is in the bladder and would try different meds.

That's not true. As has been discussed before, "prostatitis" is probably a misnomer, and so is "interstitial cystitis" (which implies an inflammation of a very specific part of the bladder wall). That's the reason for the new names: chronic prostatitis / chronic pelvic pain syndrome and PBS (painful bladder syndrome). In fact, most experts nowadays believe they are the same disorder.

Back in the 80s and 90s, people thought that IC was caused by glomerulations (lesions) in the bladder that can be seen upon cystoscopy with hydrodistension. However, 60% of patients with clinical symptoms of IC do not have these, and even more interesting, many people without clinical symptoms do have these glomerulations. Therefore, the experts have changed their thinking about IC. For instance, look at the new NIH grants, which are designated for Urologic Chronic Pelvic Pain Syndrome (UCPPS), a term designed to encompass IC and CPPS.

viewtopic.php?f=4&t=4999

In various places on the Internet, you'll still see lots of use of the old terminology and diagnostic criteria when discussing IC.

As for the part about not needing PT treatment, consider the following:
viewtopic.php?f=37&t=808&p=3954
viewtopic.php?f=7&t=239&p=1158
viewtopic.php?f=37&t=248&p=1214

There are studies published on the effectiveness of PT in IC. In fact, just go over to the IC network and just do a search for "PFD".

http://pubmed.ncbi.nlm.nih.gov/11696740

Pelvic floor myofascial trigger points: manual therapy for interstitial cystitis and the urgency-frequency syndrome.
Weiss JM.

Pacific Center for Pelvic Pain and Dysfunction, San Francisco, California 94109, USA.

PURPOSE: The effectiveness of manual physical therapy was evaluated in patients with interstitial cystitis and the urethral syndrome, that is urgency-frequency with or without pelvic pain. The rationale was based on the hypothesis that pelvic floor myofascial trigger points are not only a source of pain and voiding symptoms, but also a trigger for neurogenic bladder inflammation via antidromic reflexes. MATERIALS AND METHODS: From September 1995 to November 2000, 45 women and 7 men, including 10 with interstitial cystitis and 42 with the urgency-frequency syndrome, underwent manual physical therapy to the pelvic floor for 1 to 2 visits weekly for 8 to 12 weeks. Results were determined by patient completed symptom score sheets indicating the rate of improvement according to outcome parameters, including 25% to 50%-mild, 51% to 75%-moderate, 76% to 99%-marked and 100%-complete resolution. In 10 cases these subjective results were confirmed by measuring resting pelvic floor tension by electromyography before and after the treatment course. RESULTS: Of the 42 patients with the urgency-frequency syndrome with or without pain 35 (83%) had moderate to marked improvement or complete resolution, while 7 of the 10 (70%) with interstitial cystitis had moderate to marked improvement. The mean duration of symptoms before treatment in those with interstitial cystitis and the urgency-frequency syndrome was 14 (median 12) and 6 years (median 2.5), respectively. In patients with no symptoms or brief, low intensity flares mean followup was 1.5 years. In 10 patients who underwent electromyography mean resting pelvic floor tension decreased from 9.73 to 3.61 microV., which was a 65% improvement. CONCLUSIONS: Pelvic floor manual therapy for decreasing pelvic floor hypertonus effectively ameliorates the symptoms of the urgency/frequency syndrome and interstitial cystitis.

[neis]

On the subject of a LOT of second guessing...I emailed my Urologist about my condition after getting a 1 year PSA follow-up(1.6). He knows my history(which I'll briefly add at the bottom), and had these comments on my condition. I think he's on the money with my diagnosis, though for a long time I was convinced it was caused by an infection, since it started after a UTI from a BJ. I was seriously considering Dr. Song, but the weight of scientific opinion(not forum) gave me second thoughts.

My Urologists thoughts:
"Yes, an interesting problem. Prostatitis in a "classical" sense is an inflammation or infection of the prostate and you would therefore expect perineal pain, urinary symptoms, and a rise in the PSA (and often quite a large rise). This all gets better with antibiotics or time, anti-inflammatories, hot baths etc- like we discussed. There are other forms of "prostatitis" which are not infections or inflammatory conditions, rather, they are due to pelvic floor muscle spasm. We label this type condition "prostatodynia". Same basic treatments, but in this situation since it is not inflammatory, there is no rise in the PSA. It is often quite hard to know which is the correct. I have suspected that you have prostatodynia type symptoms so I would expect your PSA to remain in this low, stable range. I hope that helps...."

My Story per PM to Administrator:
"So glad I finally joined. Reading your thread on Dr. Song was very "balancing" after too much exposure to the other site. I've spent the last couple of hours exploring all the research and treatments and am blown away at your dedication and the amount of work you've done. My chronic prostatitis / chronic pelvic pain syndrome began after an infection I got from oral sex in July, 2006. I had a green discharge, but tested negative for chlamydia and gonnorhea. I was treated for both as a "public safety" precaution, and also with 4 weeks of Cipro after my chronic prostatitis / chronic pelvic pain syndrome symptoms came on. I saw Stephanie Prendergast for 6 sessions, and got no improvement. Currently I have perineal aching and burning, shock impulses through my penis when my perineum is stressed such as when I cross my legs in jeans while sitting, pains/cramps in my perineum when I pee, especially when I try to add a little force to the stream via whatever muscles control this mechanism. Also, I have a vibrating prostate massager that I used for a while, abandoned, then began again last week. While using it, I decided to vibrate the upper inside of the perineum, and in half an hour I was having many of the bad perineal symptoms I had at the beginning of my CPPS, especially the painful shocks/inpulses through my urethra, and nighttime awakening with severe perineal aching. You can see from the origin of my condition how interested I was in the Song discussion. My intuition guided me properly despite my feelings of desperation at times. I was not getting sufficient responses to my questions, and was routinely deleted for asking pointed question about Song, Rob, Debbie, and Cooper. Today it all ended, and believe it or not I was still open to the idea of seeing Song. Today that too has ended."

[ramana]

Is this vibrating prostrate massager a way to treat the trigger points then?

[superuse]

Avoiding the trip to China sounds like a good call.

--jjf

[calguy]

Well this thing finally effected my job performance. My supervisor at work pulled me to the side and let me know that lately I have been giving off a really negative attitude and has been going on for a while. I guess people have noticed I am just not as enthusiastic about being there and kinda of a not give a shit attitude. This made me think and I have to be honest with myself and realize that over the last year I have been in kind of a strange place and that maybe I have been internalizing a lot of stuff and really not at peace with where I am in life, even before this. My girlfriend even noticed some changes in me. I have great job and pretty good life but maybe I was a lot more anxious than I realize if I really look at myself. I guess this makes you examine every aspect of your life and I think stress may have ben a big factor in this coming on. Anyways I think I need to really work on being positive and relaxing more. hopfully in the long run this may help me change in a positive way. Just something I thought I would share as I feel it ties into my condition.

[carld]

Well this thing finally effected my job performance. My supervisor at work pulled me to the side and let me know that lately I have been giving off a really negative attitude and has been going on for a while.

Bingo.... Let the healing begin....Now you are on the path to recovery.... Once you make the decision to change your worry and outlook on life

The exact same thing happened to me about 4 months into my onset. I got the call in the office and etc...I remember wanting to tell the bastard let me put a lighter to your crotch and see how you do at work. Oh the good times...

[garyholc]

Same with me mate, its difficult to be happy and jolly and your normal self when inside you are hurting, and mentally you are going through hell wondering if you will have any quality of life in the next few months and years - like you, the last place I want to be is sat at my desk in work.

[calguy]

does moving forward in relaxed way mean you have to walk arond like a 60 year old man or is this more a state of mind thing.
i have been babying my body at work and scared to push it as i dont want to cause everything to flare up. i know you have to listen to your body and of course there are going to be some pains but should we just push through sometimes and trust we are healing, i feel that i am.

[carld]

I would....Charge hard in a relaxed way I say...

[calguy]

Went and saw PT today and had to tell you guys about it. First anyone who says PT doesn't work and this thing isn't muscle related is crazy. PT said internally I feel much better and don't need as much work in there. She did some external work around bladder and wow did it hurt. She could recreate all the problems I was feeling around bladder, testicles and urethra. After she was done I felt great and no tightness around bladder. She feels I need to do more stretching and incorporated some yoga moves into regiment to help strengthen and stretch muscles. I really do feel much better after 2 months of PT and now I think this external work is really hitting some key trigger points for me. Just wanted to encourage anyone who hasn't seen qualified PT to get to one as soon as possible. Going to go and enjoy a day of no discomfort!

Side Note: My PT just gave lecture to group of urologists last week and said a lot of them are finally willing to except that PT could help many people. One guy said she finally got him away from the bladder as a cause for some of his patients pain. So the word is continuing to spread and hopefully more people can find some relief from PT treatment.

[carld]

[rider fan]

Excellent! Keep up the good work!

[calguy]

Muscles burning sore down front of legs and inside too I guess. Also on the side of pubic area. Just wondering if this is a nerve condition. I didn't think muscle could burn like that so figure it maybe be something else. when I do a lot of walking it or push my body too hard is when it fires up. Stretching helps too

[webslave]

Sounds like nerve cross talk.
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