Hi Everyone,
I'm new here and I've been dealing with chronic prostatitis for about four years now. I've done the whole urologist thing: antibiotics, cystoscopy, prostate massage, etc. None of it worked. Then I found this website and read AHIP. My symptoms have improved about 30% just from paying attention to my floor muscles and trying to keep them relaxed. I still get severe flare-ups, so I need to seek further treatment. I have read through a lot of this forum and it seems that the general consensus is that the best treatment is to go see Dr. Wise at Stanford. My question: is going to see Dr. Wise still the best option or have I missed any other good options. Also, I just recently moved to the New York City area, so maybe there are some people in this area with treatment methods.
On another note, thank you so much to the people who designed this website and to everybody who helps keep it going. I have had many awful days, as I'm sure you all have had, and this website has been a huge help. I'm sure in the end this website will be responsible for allowing me to live a pretty normal life. Thanks again.
Wishing you all the best,
Kevin
Is Stanford Protocal The Best First Step?
Is Stanford Protocal The Best First Step?
Age: 32 | Onset Age: 19 | Symptoms: "Golf ball" in butt rectal pain, nerve pain down back of legs, recent urethra pain | Helped By: Pelvic PT, relaxing, low stress, diet | Worsened By: diet (fruit, vegetables, sugar, spices), stress, ???
Hi Kevin - welcome to the forum.
If you can afford to go to Stanford then personally that's the approach I'd take - as you'll get so much out of it. I'd also recommend taking your significant other with you so they can continue triggerpoint therepy when you get back to NY. If I live in the US then I'd definately have visited Dr Wise.
If you can't afford the costs then I believe there are physios in NY that could help with the triggerpoint element of the treatment. Perhaps others might be able to reply to this thread with names (also do a forum search).
Richard.
If you can afford to go to Stanford then personally that's the approach I'd take - as you'll get so much out of it. I'd also recommend taking your significant other with you so they can continue triggerpoint therepy when you get back to NY. If I live in the US then I'd definately have visited Dr Wise.
If you can't afford the costs then I believe there are physios in NY that could help with the triggerpoint element of the treatment. Perhaps others might be able to reply to this thread with names (also do a forum search).
Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Kevin, you can see Marilyn Freedman in Great Neck, if that's not too much of a trek for you. She was recommended to me by Dr Wise as the 'most experienced PT in the Protocol'. Her number is 516 - 829 -0960. I've been a couple of times when visiting family in NY, and although can't be sure she helped me, she's a very kind, understanding woman who will try to put you at ease. Fyi, in NY, you'll need a prescription for PT work.
I've also seen the name Stacy Futterman (sp?) cited, but I don't have her contact info.
As for Dr Wise's relaxation protocol, give it a shot yourself. The one (relatively) good week I've had in the past 7 months or so was when I would do my own relaxation at night listening to classical music on headphones for 20 minutes or so. I'd feel almost normal for the rest of the night, and then breathe deeply when sitting at work during the day. But that takes discipline and time.
But definitely check out Marilyn. You don't have much to lose, and it could help you. I didn't get the soothing reaction from trigger pt release that others seem to get, but Marilyn thinks they're just more moderate in me. The perineal pain sure as heck doesn't feel moderate.. I'm actually thinking of agreeing to do the cystoscopy my uro had urged me to.. not sure it'll show anything though so why go through such an invasive procedure.
..but this is about you - good luck and keep plugging away.
Hope this has been helpful.
- Michael
I've also seen the name Stacy Futterman (sp?) cited, but I don't have her contact info.
As for Dr Wise's relaxation protocol, give it a shot yourself. The one (relatively) good week I've had in the past 7 months or so was when I would do my own relaxation at night listening to classical music on headphones for 20 minutes or so. I'd feel almost normal for the rest of the night, and then breathe deeply when sitting at work during the day. But that takes discipline and time.
But definitely check out Marilyn. You don't have much to lose, and it could help you. I didn't get the soothing reaction from trigger pt release that others seem to get, but Marilyn thinks they're just more moderate in me. The perineal pain sure as heck doesn't feel moderate.. I'm actually thinking of agreeing to do the cystoscopy my uro had urged me to.. not sure it'll show anything though so why go through such an invasive procedure.
..but this is about you - good luck and keep plugging away.
Hope this has been helpful.
- Michael
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
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robertpagen
- Old Hand
- Posts: 316
- Joined: Thu Mar 18, 2004 4:51 pm
- Location: Beijing, China
Marilyn freedman is good
Another vote for Marilyn freedman.
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
kdow,
I answer a resounding YES to your question. For the most part, the SP is FREE. You can do it all on your own once you get the initial hang of it (stretching, massage, relaxation, therapy). Don't discount external trigger points. For internal stuff, have an expert help you if you can afford it, and after you have experience with them, you can continue on your own confidently.
But the SP can't hurt, and is good for you. So why not do it why you investigate all options?
Mike
I answer a resounding YES to your question. For the most part, the SP is FREE. You can do it all on your own once you get the initial hang of it (stretching, massage, relaxation, therapy). Don't discount external trigger points. For internal stuff, have an expert help you if you can afford it, and after you have experience with them, you can continue on your own confidently.
But the SP can't hurt, and is good for you. So why not do it why you investigate all options?
Mike
This is NOT medical advice. I am NOT a doctor.
Age: 43 CPPS: 10+ Yrs Recovery Status: 80-85% Symptoms: Pain in testicles, scrotum, rectum, prostate, perineum Makes Worse: Anxiety, Tension, too much Nookie Makes Better: Stretching, Abdominal Massage (Go Theracane!), Relaxation
Age: 43 CPPS: 10+ Yrs Recovery Status: 80-85% Symptoms: Pain in testicles, scrotum, rectum, prostate, perineum Makes Worse: Anxiety, Tension, too much Nookie Makes Better: Stretching, Abdominal Massage (Go Theracane!), Relaxation
Good point on the external triggerpoints Mike.
A Theracane is a must buy imho.
Richard.
A Theracane is a must buy imho.
Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Thank you all very much for replying so quickly! And I'm glad to be apart of this forum. I will be sure to provide positively to the forum, updating my condition and sharing my experiences to help answer others' questions. You all have been great.
Thanks again,
Kevin
Thanks again,
Kevin
Age: 32 | Onset Age: 19 | Symptoms: "Golf ball" in butt rectal pain, nerve pain down back of legs, recent urethra pain | Helped By: Pelvic PT, relaxing, low stress, diet | Worsened By: diet (fruit, vegetables, sugar, spices), stress, ???
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LightningTree
- Sage
- Posts: 623
- Joined: Sat Jul 03, 2004 6:50 pm
- Location: San Francisco, CA, USA
- Contact:
I'll second Mikes assertion that you should start doing the self-maintained stretching, moment-to-moment-relaxation, and relaxation sessions right away.
This is not medical advice, and I am NOT a doctor of medicine or a related field.
* Age:33 Onset: February 2004.
* 99.9% IMPROVEMENT in 2.5 Years with the first year being the really hard part
* Current Symptoms: Mild irritation of perineal muscles on occasion. Relieved for days at a time by a specific stretch (see below).
* Initial Symptoms: Terrible penile, urethral, rectal, and perineal burning/aching with addition afferent sensations.
* Current Treatments: Deep stretching of the legs and pelvis. Most effective: Deep psoas and levitar ani stretch using the first phase of the "pigeon pose" from Yoga. When a deep pulling is felt in the middle of the pelvis next to the upper rectum, symptoms are completely alleviated for several days.
* Past Treatments Hyperprotection of the perineum for 1.7 years, Walking, Rectal biofeedback, Stanford/Wise-Anderson Protocol, Conditioned deep relaxation practice, Men's Multi-Vitamin and an Extra B-complex pill, all seemed to help.
Hey Kevin.. I've been seeing Stacey Futterman, she is on 12 East 46th St.. She is very good, and I've already been seeing a lot of improvements.. The phone number there is 212-499-0848.. You should definitely take everybody's advice though, and start doing the relaxation, and the stretching right now..
Age 21.. | Symptoms: Extreme discomfort in bladder, and lower abdomen.. To the point that I can't sit still, and sleep, can't do anything.. The only that will help is getting into the bath... Urinary frequency, Urinary hesitancy, sometimes taking a few minutes to get just a little bit out.. Sometimes lower back pain when I lay down at night.. Never have the golf ball feeling everybody talks about, and never have a problem sitting down.. Helps: Hot baths, Xanax (but makes me extremely tired), stretching (it seems like only sometimes), pain killers (ex: Percocet, but if I take them, they end up making me worse the next days following, probably due to the urinary retention they cause).. Makes worse: Stress is the main main thing, caffeine and spicy foods too, but not really a whole whole lot.. only a moderate amount..