My Experience at the Stanford Clinic

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My Experience at the Stanford Clinic

Post by scoobysnacks » Wed Dec 13, 2006 10:11 pm

Hey Gents,

As I promised when I got a minute I would let you know how my trip to Sebastopol went to work with Dr. Wise and his professional team of experts.

To recap I have spent the last year fumbling through the SP. I have done stretches I figured to help, I have tried internal work diligently, though at times not directed, and tried to do relaxation. I cut out things that caused flares like weight lifting (much to my dismay), and playing soccer continually. Though I do play sporadically. I walk for my form of exercise. Over the course of the year I have seen inflammation in my LUTS go down quite a bit, and an easing of the spasm I experience when trying to first pee. It used to be a very tight tight contraction. There are some days when its non existent, but I always feel not quite right. So I finally got on the plane. Now to the good stuff.

First, Dr. Wise is a very mellow, kind, caring, and intellectual individual. Just being in his presence is calming. I think relaxation training is going to be great for me. Id like to be more of that type of person.

The clinic is in the forests of sebastopol, wine country. Red woods surround the property, the clinic is a new "house" that is beautiful and custom. Very rustic, and seems to fit Dr Wise well. He does not live in the clinic, but rather, in a smaller version of it over the hill. You can hear a stream running below from his cottage. Its quite surreal.

I'm not quite sure how to lay this out, but Ill just ramble then you guys can ask me questions.

On Friday morning at 8AM I had my first visit with Tim Sawyer. This cat is a cool as they come. He is an avid mountain biker, song writer, plays in a band, and just has a VERY GOOD bedside manner. Being an athlete we connected on that level, but he also connected with the creative people there too since he writes songs and is in a band, and tours around to I think he said 13 different states.

He first wanted my complete history, which I won't bore you with a repeat. He started on my abdomen, which I said I dont have TPs there. He found four. Two an inch on either side of my diaphram, and two in my quadratus (which actually runs from the spine to hip, but you get it by pushing through the obliques). These areas made me squirm off the table. Felt like his hands were cattle prodes, but he assured me he wasn't pushing that hard. I couldnt breathe when he dug into the diaphram ones, hurt like a bitch.

He told me I had the tightest diaphram of anyone he ever saw, including an olympic marathoner who had similar TPs. He had to use his elbow to get into them, and they still didn't break up, but they are much much better after five days treating. He also found TPs at my hip bone towards the butt, and on my sides, about an inch or two up from my hip bone. The final ones were on my lower spinal erectors, and these made me squirm like hell.

He said a diaphram that tight alone would pull on the pelvic floor. This all made sense to him and I since I told him how I used to hold my stomach in all the time. He also found two really bad ones on my adductors, these hurt like a bitch, but have subsided and are easy to work jsut about anywhere you are.

So then came the internal work. Since I dont have urge or frequency he figured most of mine would be in the back, especially since I told him I was a restless sitter.

He pushed up front but nothing to speak of, no TPs.

He then went middle left and right, and not much, but a mild spot on both sides, about a 1 or less.

He then went to 9 o clock and I about passed out. It felt like he had just ripped a big piece of muscle from the bone, it was flutteting and twitching, and my urethra started burning, it was all making sense in one visit. He then went to ten o clock, and again about passed out. The feeling was like 30 needles being pushed into one tiny area, again more fluttering and spasming. He said these were 3+'s, 3 being the worst, lol. He also said I was textbook, and my symptoms made perfect sense with the location of these TPs based on my "jump" test. Meaning if the patient jumps its a TP.

He then switched sides to my right. I figured the right would be worse, but they were a little less painful, still bad, he gave me a 2+, I felt better about that.

The first day you bust right into the relaxation training. And its pretty cool stuff. I read the 4th edition on the way home, and its pretty much dead on instruction how to do it, its just so obscure it almost has to be taught experientially. What I mean is, although the 4th edition lays it out nice for me, it only made sense after doing it hands on, prior to that I think it would have been greek. I know what I read in the earlier versions was.

In a nutshell paradoxical relaxation teaches you to "feel the feeling" of tension, and then to be okay with it, dont fight it, dont push against it, just "be with your tension", and "relax what will relax, around it." He is teaching you to be okay with the pain, embrace it, and relax around it, and in doing so you will eventually undermine the tension by not fighting it. I believe the relaxation will be the final piece for me to this, plus knowing exactly where my TPs are instead of searching for them aimlessly.

While there my symptoms were almost non existent, still havent had a huge flare, but Tim said it will come, and when it does, just go with it as we are taught. Do my stretches, get a back, walk, light job, and do TP work.

Dr Wise doesnt want you to do battle with this thing, but rather embrace it and apply the tools to work it out.

For instance when I did the squat stretch I used to push down a bit, he said, no, no, no, just be, get in the postion and relax around it, relax your face, stomach, pelvis, and just sink into it.

I found that I was getting to the point during relaxation that I was on the verge of peeing, but I didn't allow myself. Dr Wise explained that that was what moment to moment relaxation is, and that I was progressing.

We probably did 20-35 relaxation sessions; I didn't count.

I should also mention Tims wife Sarah and her twin sister Dara then instruct you through TP release of external TPs, teach you the stetches that will help you most, and teach you skin rolling which helps loosen the fascia that covers your muscles, and tightens as the muscles constrict as TPs.

I believe it will be another long year of devotion, but I truly feel empowered and accept this challenge head on to rid myself.

I should comment just meeting other men with this was comforting. There were two athletes in attendance, myself and a football player. Another guy that I connected with was in Investment banking in New York, but most recently getting ready to start with a hedge fund, all stressing work, very young guy. And the other guy I connected with is a professional photographer in New York with a pretty impressive resume of models he has shot. Most people seemed to fit the type A.

You could spot the Type A go getters and the more withdrawn and probably on the nervous, social anxiety, side of things. Seemed most fit into two categories, with probably a little crossover to both. All in all, it was good to meet people with this, discuss it. We actually did quite a bit of laughing about it. We termed PT, "AM" [ass massage]. Not very creative, but funny to us nonetheless. We even had a gentlemen from Spain travel all that way, and he said he was feeling much better after battling this for 17 years.

One young man had spent the last 5 mos bedridden under the advise of a physician, those type of stories just get you. He was so tight and soar just from getting up a moving around again, much less having TP release work done.

I believe the oldest gentlemen there was 67, and suffering for 40 years, wowza, gotta feel for someone like that. Though he has had periods of no symptoms.

I'm sure I've left something of value out, if you have questions please let me know.

Regards,

SS
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex

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Post by scoobysnacks » Wed Dec 13, 2006 10:33 pm

Something that just came to me, that I thought was indicative of the people who come down with this conditions; Tim Sawyer told me the first day the following:

"If I was going to start a company I would make having CP a prerequisite"

It didn't need explaining, but he followed it up with the fact that the achievements, drive, and positions of esteem that most CP'ers have you could make the most profitable company in the world.
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex

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Post by webslave » Wed Dec 13, 2006 11:02 pm

There's a post you don't often see!

:laughing:

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Post by carld » Wed Dec 13, 2006 11:16 pm

Most people seemed to fit the type A.

"If I was going to start a company I would make having CP a prerequisite"

Hey Scoobs, those comments right there explain it all. I once told my wife that I have the go getter personality to fight this wretched thing, the irony is, it's my type of personality that may have caused this in the first place. :wink: I had to just laugh and I can hear my Wife giggle as well. How true.

So then do you feel you are on the mend and in the right direction? It seems you are. Glad to read your words.

Regards, Carl...
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.

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Post by scoobysnacks » Wed Dec 13, 2006 11:26 pm

Yes in the right direction.

I now feel I have the proper roadmap AND compass to follow it.

Before I felt I was navigating the roadmap only using the sun as my guide. Sometimes I was on, but mostly, I was in a general direction, but missing the exact aim. If that makes sense.

I still have a long journey ahead.

Regards,

SS
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex

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Post by carld » Wed Dec 13, 2006 11:53 pm

I'm going tonight to see my PT and my Wife is going to meet me there to learn to do the internal work.

Question Scooby, If I feel a tightning around the prostate and LUTS syptoms, it would make sense that She (PT) should really work the muscles around the prostate to loosen that area up?

Also I think this is important, If I press 1 inch above my anus twards my scrotum, the feeling I get mimics my main complaint of discomfort or a feeling of having to urinate, and I get this feeling after a large bowel movement. So could this be my sphincter that's clenching down and causing this?
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I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.

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Post by Clay » Thu Dec 14, 2006 2:34 am

How many people attended total? How did Sawyer find time to work on everyone? It must be intense.

Great post, thanks for the info.
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Age 64, sudden onset 5/06 during bout of flu, colitis, lung and liver problems. Pain in penis, then moved to rectum. No urinary symptoms. Use Lyrica, Elavil, paxil, Xanax, morphine, vicodin, relaxation, pads for sitting, 100+ PT sessions. Sensitive to gluten, milk protein, soy. I have CFS, anxiety, GERD, Barrett's, colitis, kidney stones, one of which referred pain to penis.

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Post by GP2 » Thu Dec 14, 2006 9:52 am

Boy would I like to so to Stanford!
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better

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Post by scoobysnacks » Thu Dec 14, 2006 3:17 pm

carld wrote:I'm going tonight to see my PT and my Wife is going to meet me there to learn to do the internal work.

Question Scooby, If I feel a tightning around the prostate and LUTS syptoms, it would make sense that She (PT) should really work the muscles around the prostate to loosen that area up?

Also I think this is important, If I press 1 inch above my anus twards my scrotum, the feeling I get mimics my main complaint of discomfort or a feeling of having to urinate, and I get this feeling after a large bowel movement. So could this be my sphincter that's clenching down and causing this?
Do you have AHIP version 4? The best thing about that book are the pelvic floor diagrams showing exactly where the TP would be, and the symptoms associated therewith. If you have it, study it, and take to the PT with you. I wish I had my copy in front of me right now, but yes, from what I learned your TPs would probably be up and around the prostate, but you can have them further up on the left and right, just in my case nothing hurt up there at all, it was healthy tissue.

However, this doesnt mean you dont have them in the middle to rear areas. Every area should be checked if she is doing her job, and your abdomen, too.

The other soar area you speak of leads me to believe you have a TP either in your external sphincter or in the pelvic floor leading towards the prostate. She should definitely palpatate the area and see how you respond. I had some TPs in my external sphincter and I worked those out before attending Stanford. They are now just a little soar, but nothing like the ones in other areas.

I should caution, I saw two PTs before Tim, and they all couldnt find a damn thing, it took Tim no time it all to make me jump out of my skin just from examining my abdomen.

Let me know if you need anything else.

Regards,

SS
Last edited by scoobysnacks on Thu Dec 14, 2006 3:26 pm, edited 1 time in total.
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex

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Post by scoobysnacks » Thu Dec 14, 2006 3:20 pm

Clay wrote:How many people attended total? How did Sawyer find time to work on everyone? It must be intense.

Great post, thanks for the info.
There were 15 plus wives, so it was a packed house.

Tim gets little to no breaks. He sees people every 30 mins, gets it appears 30-45 mins for lunch, and back at it.

Funny, I asked him about this. He had a Theracane out in the PT shack and said in between people he uses it to hit his lats and chest which get a good workout. Then he hits trigger points in his forearms with his hands, he showed me these points cause my hands hurt sometimes from typing.

He also showed me the TP areas in my calves as I've had shin splints and bad feet for a long time. He immediately found two areas on my calves that referred pain directly to the bottom of me feet. Just got out the textbook, showed me the areas, hit them, and the pain referred. This is some amazing stuff and a huge light bulb going off for me. Now I work those too, so I can get back to playing soccer pain free.

Regards,

SS
Last edited by scoobysnacks on Thu Dec 14, 2006 3:27 pm, edited 1 time in total.
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex

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Post by scoobysnacks » Thu Dec 14, 2006 3:25 pm

GP2 wrote:Boy would I like to so to Stanford!
Well, I wanted to go three years ago, but was in school, I've been socking away money for it for some time.

GP2, look at it this way. How long would it take you to save just 2,000 or even 2,500? Could you cut out alcohol, eating out, going out as much. Just save half, and charge the rest, which would be about 2,500; the whole trip, hotel, clinic, eats cost us about 5K, and that was taking my wife too.

If you took the 2,500 that you saved, even if it took one year, and then charged 2,500 to a credit card, your monthly payment on such a small amount would be probably 15-20 bucks a month.

Last night I peed normal for the first time in 3 years, trust me I wish I went sooner.

There will be roadblocks, so I told my wife I can't get too excited about the results so far, but its been pretty incredible.

If you think TPs and tight pelvic floor is truly your problem, Id devise a plan to get your butt to Stanford.

I did overhear that their are about 5 areas across the country interested in setting up clinics, but they havent bought into the relaxation side of things, so I'm not sure how Dr Wise is going to proceed about this, nor do I know when this might occur.

Regards,

SS
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex

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Post by carld » Thu Dec 14, 2006 3:38 pm

Thank you scooby, my PT so far every time she does the internal work, it mimics my discomfort feeling the need to urinate which is my main complaint. 10 O clock and 4 O clock were painful areas. But I don't have any pain. Dr. wise knows of my PT, so I think I have an expert PT because the main PT they do is pelvic work for Females and Males.

I was glad my wife was there. She's a trooper and has no problems learning and willing to do this for me. I just told her she can't be pissed at me when She is going to do the internal work. :lol:
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.

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Post by GP2 » Thu Dec 14, 2006 3:40 pm

Cheers Scooby

My profile needs updating as it doesn't list my location as the UK. So theres another cost implication!

I'll stick to my protocol at the moment and try my best to find TP's myself externally (with the help of guys like yourself on this board) and internally (with my PT).

Its all a matter of severity I think with CPPS. I could have as many TPs as you scooby no doubt. I could also be like many guys who are doing really well with their own version of the SP if you like.

But you're right with my new promotion in the New Year (I'm not in a majorly stressful industry thankfully) I'll save a little each month.

Thank God (I've found him again in a big way since all this guys & in a good way not a desperate way) that we have options to us that keep symptoms low even if we can't get to sunny California.

I do believe that one day a SP style treatment centre will be set up in the UK / Europe.

Greg
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better

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Post by scoobysnacks » Thu Dec 14, 2006 3:44 pm

Greg,

That make sense! There was one gentlemen from Spain, but he suffered for 17 years, and I guess he finally said screw it, he is now 41. I wish I would have asked him if he was glad he came. But, he told me he was definitley feeling better.

Whatever works for you my friend. You may have access to a better PT, I simply could not get anyone that could help me. They just never found anything, which added to my depression, because in my heart of hearts I felt that this is what I had. I even went to a PT that trained under Tim, and she found nothing. When he heard that, he shook his head, and said I'm going to have to make a call. He seemed serious when he said that.

Good Luck to you my friend,

SS
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex

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Post by GP2 » Thu Dec 14, 2006 3:53 pm

Thanks buddy

Luckily my PT in Scotland although perhaps not of the same standard as Sanford PT's can and has found many internal TPs for me. He's learning all the time too. I figure that if some guys can get a loyal (she'd have to be) wife / girlfriend with the help of AHIP diagrams to get those internal TPs then my physio & I can work together to do the same. I've started seeing a girl recently but I can't quite figure out how to start the conversation..

" So Nicky you know I've been seeing you for 2 weeks & I like you a lot - well I was wondering if you could get some gloves and...." :oops: I jest of course!)

Good luck mate - you'll get there because its pretty obvious to me that you're one of the many persistant take on any challenge guys I see on this forum!
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better

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