Stanford/Wise-Anderson Protocol never diagnosed with anything specific..

[gifford]

I see from reading AHIP that Stanford does a lot of tests to determine what one's problem is in their their normal treatments program to determine if it is CP,CPPS, IC etc. But they do none of that in their 5 DAY SP seminar as I see..

I had prostatitis symptoms and tremendous pain later on following a cystoscopy but I was never examined or diagnosed for any of these things- CP,CPPS,CI, etc. . My uro just gave up when my urine would not grow a culture and said it didn't indicate prostate problems. I have already seen all the uro in the area and none wanted to do any more tests. Since I was in pain, they did not want to deal with me.. I do have tremendous constant, chronic pain without.. Would it be important to get a diagnosis from from Dr. Anderson first before attending or trying the protocol.. I read the whole book and this point was not clear other than that they seem to treat CP,CPPS,CI, etc. sufferers the same.

If its not important that I locate the cause, why is it that Stanford does so many tests in their normal treatment options (not SP) to do exactly that??

[webslave]

Your post is a little confusing, but you seem to be very concerned that you may have something other than CP/CPPS (pelvic myoneuropathy). Firstly, may I ask what the exact findings of the cystoscopy were? Secondly, since your pain came on after the cystoscopy, I suspect that the pain we all get after a cystoscopy, especially a rigid one, started off a severe "guarding" pelvic spasm in your case. You may also want another (different) uro to give you another cystoscopy to see if the first one resulted in a stricture. See https://ucpps.men/prostatitis-cystoscopies-and-urethral-strictures

[gifford]

I did. No obvious strictures other than mild BPH which my first uro disregarded. But if it is nerve pain caused by the cysto, it would not show in a cysto. Also I understand this const deep burning usually indicates nerve pain. I see no one else on this site who talks about burning as one of their symptoms other than burning during urination and ejaculation. My burning pain and penal tightness started the next day may have set off my chronic prostatitis / chronic pelvic pain syndrome which I would not have otherwise. It is awful coincidental that my chronic prostatitis / chronic pelvic pain syndrome pain just happens to be in my urethra in the exact location. If it did set off CPPS, it seems like there are at least 27 places the pelvic pain could be.

[webslave]

To be honest, I've never come across a case like yours, where the pain starts directly after a cysto and keeps up chronically. I can only assume that something untoward happened during the cysto. I suspect some samples were taken.
https://ucpps.men/pros ... trictures/

[Astrotitan]

Gifford wrote

I see no one else on this site who talks about burning as one of their symptoms other than burning during urination and ejaculation.

I had the constant burning which lasted for two weeks. It eventually went away after taking antibiotics, this could have been coincidental since no bacteria was found in culture. Massaging trigger points more likely helped me.

[LightningTree]

Both my twin brother and I had the constant burning for a few months.
Then it came and went over the next 6 months.

I think lots of people here have that uro burning. Some, including me, even got very red at the tip of the urethra. The whole thing was inflamed. No clinical signs of infection, however.

p.s. See my initial symptoms at the bottom of my post.

[NoMoPain]

Back in my horror days I had constant burning all the time. It felt like someone stuck a lighter up my ass and kept the thing lit.

I strongly suspect you simply have trigger points in your pelvic and\or surrounding muscles just like most of us.

The only effective treatment that I am aware of is the Stanford/Wise-Anderson Protocol but you do not have to fly out to Stanford to do it. Find a PT, order the Byron Katie tapes, practice abdominal breathing and relaxing the pelvic floor and reading the AHIP book are all standard advice.

[robertpagen]

In the 1990's when I had burning come and go constantly, the prevailing thinking was that there was an infection. we all know now that was simplistic nonsense. the burning sensation is is felt because the nerve which goes through the pelvic muscles out to the tip of the penis is so irritated.
That was a terrible time Every time I had sex with a nice woman, I would get electric burn sensation and accuse her of giving me an STD. Don't blame your partner for how you feel. I lost a good woman this way, but that's all we knew at that time.

[gifford]

Just want to clarify.
My burning felt like it was in my prostate area, not the tip of my penis.
It was constant night and day for about a month. Whether or noyt I urinated made no difference. I had mostly penile base pain which I assume was also in the prostate area.
Curious if others experienced this type of burning.

[gifford]

To be honest, I've never come across a case like yours, where the pain starts directly after a cysto and keeps up chronically. I can only assume that something untoward happened during the cysto. I suspect some samples were taken.

Just saw your response from January..
I am sure that is true that you have not heard about anyone like me.
No, samples were never taken. Urologist was looking for a kidney stone in my bladder at the time. I urinated around/ during the cysto and had terrible desire to pee afterwards for about 1/2 hour. Pain at base of penis began next day and lasted 24/7 for months. After not finding kidney stones, no help from 3 antibiotics, and a PSA of 0.9 , that uro gave up . .Unfortunately second urol said it was BPH even though my prostate was mild and only in nodes.. Recommended Greenlight Laser. Unfortunately he must have wanted success because he opened up my bladder neck . Now I have retro so EPS can't be done .. It ended my hesitancy and urgency but did not do anything for frequency and urgency but that did improved some over 4-5 months. Unfortunately did not learn about this web site until after my surgery. I went to PT who did find trigger points -mostly inactive- except on each side of my prostate which duplicated my penile base (prostate?) pain. . I bought AHIP and trying to follow it. Wife has learned to to some therapy from my PT. Penile pain is down but have some kind of discomfort ever since the start. Now it is mostly testicle pain and bladder pain and/or constant urge to urinate even after doing so. Not urine retention the way the Greenlight opened my bladder neck.. Unlike others who have "flare-ups" (and I assume) flaredowns. I always have had something discomfort of some kind.. Had an MRI but never had an TRUS or EPS. Unfortunately the Greenlight surgery just complicated things. Now no urol will touch me. They just as soon that I try therapy for chronic prostatitis / chronic pelvic pain syndrome just to get rid of me. Perhaps the SP effort has helped my penile pain since it is mostly gone but it has done little for the symptoms I have now. Hope they were not from the Greenlight otherwise all the SP work may do nothing more.. I am getting depressed just thinking about that possibility and loosing motivation to continue PT, exercises,relaxation, etc. . I will probably ask my MD for an antidepressant . I have been nearly useless for 10 months now. Thanks for listening.

[HelpADude]

They way I understand the Stanford stuff is that regardless what you call the symptoms, the treatment is the same and IC is caused by the same mechnism as other chronic prostatitis / chronic pelvic pain syndrome symptoms and IC is part of CPPS.

I am really curious if there are anyone who had the classic IC symptoms such as bad reaction to coffee, fruit juice, spicy food, etc that are now able to have those foods without aid such as Prelief, etc, after doing the Stanford Protocal. Anyone?!

Back to your condition, if I get the timeline correct;

-You had "prostatitis symptoms" which prompted a cystoscopy.
-After cysto you started having non-stop acute pain.
-Had a "greenlight laser" to stop the pain

The I wonder if you had chronic prostatitis / chronic pelvic pain syndrome type condition even before the cysto and that the pain of the cysto caused a major flare up (happened to me).

So what's your original symptom like, before the cysto?
Does IC diet help?
Does any pain medication help?

[Sleeper Service]

Gifford - perhaps I'm being overoptimistic but I'm seeing signs of progress:

It ended my hesitancy and urgency but did not do anything for frequency and urgency but that did improved some over 4-5 months.

Perhaps the SP effort has helped my penile pain since it is mostly gone but it has done little for the symptoms I have now.

SP and other methods are not overnight fixes and we have to keep working at them to get where we want to be. Keep going and if you need an AD then get one - there is no shame in finding ways to cope with this condition.

[gifford]

Wrote a long reply to Helpa a Dude but never made ithe board for some reason. Perhaps was "filtered".
Frustrating

May have beeen predisposed to chronic prostatitis / chronic pelvic pain syndrome and systo set it off.
Still wish I never had the thing.
Maybe I would not be dealing with all this.
Think my waking up with urinary problems started off from BPH effects from taking too much Sudafed for sleep and alergy. Did not realice it could bring on BPH symptoms.
After that I had cysto then pain + urinary symptoms.

[gifford]

Unfortunately it was the surgery that " ended my hesitancy and urgency".
Before I knew about SP..

[webslave]

Wrote a long reply to Helpa a Dude but never made ithe board for some reason. Perhaps was "filtered". Frustrating

Gifford, shape up please. You comments are relentlessly negative, you do not reply to my PMs, your spelling is atrocious and I'm sick of fixing it, and now that you're suggesting that we are censoring your posts, you are sailing close to the wind.