Anyone come across this site? http://home.swipnet.se/isop/fallbeskrivningar.htm#C
I read it just now, and oh my god, I am shaking with fear about this condition. I'm in the early stages of this thing, and if I have that ahead of me then I'd rather slit my wrists now! That is some scary stuff on that page.....
This is some scary stuff
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garyholc
- Old Hand
- Posts: 408
- Joined: Sun Jun 24, 2007 12:11 am
- Location: Cardiff, South Wales UK
This is some scary stuff
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
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webslave
- Maintenance
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- Joined: Wed Oct 30, 2002 3:18 pm
- Location: Please give your location so we can help better
That website is run by an old Swedish pensioner. Trying to put it politely, I'll say that he is one of the "old school". To put it more bluntly, he is an old fool who steadfastly refuses to listen to anything I have tried to tell him for many years, perhaps because he is a staunch ally of the other dinosaur in this field, who runs prostatitis--dot--org. 
A few years ago the Swedish Luddite had one of his readers come to this forum and try to disrupt conversation, for which he was paid back in kind. The fact that I retaliated is frequently used against me in his editorial tirades.
If you take your advice from websites like that, you will not make any progress.
A few years ago the Swedish Luddite had one of his readers come to this forum and try to disrupt conversation, for which he was paid back in kind. The fact that I retaliated is frequently used against me in his editorial tirades.
If you take your advice from websites like that, you will not make any progress.
Last edited by webslave on Sun Jul 08, 2007 6:18 am, edited 6 times in total.
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rider fan
- Veteran
- Posts: 204
- Joined: Sat Feb 11, 2006 8:46 pm
- Location: Canada
Re: This is some scary stuff
Wow. All I can say is, thank god for this site so that we can all realize that prostatitis isn't a death sentence, and that there is treatment and hope.garyholc wrote:Anyone come across this site? http://home.swipnet.se/isop/fallbeskrivningar.htm#C
I read it just now, and oh my god, I am shaking with fear about this condition. I'm in the early stages of this thing, and if I have that ahead of me then I'd rather slit my wrists now! That is some scary stuff on that page.....
What is the point of that site anyway? To make the suffering even more depressed?
Age: 32 | Symptoms: Twingy pain/muscle spasms in groin area (gone), tingling sensation at tip of penis (has resolved as of now), urinary frequency (resolved as of now), thicker/decreased amount of semen (resolved as of now). Makes better: Stretching, Relaxing pelvic muscles, moment to moment relaxation, not sitting with legs crossed, Elavil, quercetin. Makes worse: Sitting, stress, more than one orgasm/day, constipation, manual labour
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Paso
- Old Hand
- Posts: 325
- Joined: Fri May 23, 2003 11:34 am
- Location: Sweden
Webslave is right,
I am Swedish and when I got this crap 4 years ago, that website was my first point of contact. I also spoke to the guy who runs it and that just made things far worse. I then found my way to this site...3,5 years later I do not know what would have happened if I had not found this place.
Stay here, all the info you need is here. Do not wander around on the internet searching for a cure (cause you will find none), when this site and the Stanford/Wise-Anderson Protocol has proven to be the way out for most of us.
I am Swedish and when I got this crap 4 years ago, that website was my first point of contact. I also spoke to the guy who runs it and that just made things far worse. I then found my way to this site...3,5 years later I do not know what would have happened if I had not found this place.
Stay here, all the info you need is here. Do not wander around on the internet searching for a cure (cause you will find none), when this site and the Stanford/Wise-Anderson Protocol has proven to be the way out for most of us.
Age:34 | Onset Age:29 | Symptoms: Suprapubic burning on and off, frequency on and off, Dribbling, | Helped By: PT for sure has helped me, stretching, Baking Soda, drinking lots of water, Omega 3 | Worsened By: Concentrated urine, Coffee, Stress...
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adrianclark
- Beginner
- Posts: 26
- Joined: Tue Jun 19, 2007 8:30 pm
- Location: London
I'm glad I came here first!
My Swedish isn't as good as it used to be (especially on medical topics) but the recommended solutions seem to extend only as far as warm underclothing and special inserts for car seats. Wow.
Absolutely no mention of muscular problems, as far as I can see so far...
My Swedish isn't as good as it used to be (especially on medical topics) but the recommended solutions seem to extend only as far as warm underclothing and special inserts for car seats. Wow.
Absolutely no mention of muscular problems, as far as I can see so far...
Age: 38; Onset: 38; | Symptoms: the famous "golf ball" sensation, irrational feel of needing to urinate, feeling of "fatigue" in pelvic floor, general lack of energy... all symptoms fairly mild and isolated; | Helped By: relaxation, stretching exercises, (possibly) alcohol, hot baths, sleep; | Worsened By: over-exertion (suddenly running without warming up), possibly excessive sedentary work
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Sleeper Service
- Sage
- Posts: 617
- Joined: Tue May 02, 2006 3:49 pm
- Location: Edinburgh, Scotland
A lot of those case histories seem to be from people who are only a few months to a year into their condition and who have tried nothing except antibiotics and perhaps some phytotherapy. Sure, there are a few long term cases and relapses but they seem to be ones who are stuck on the antibiotics route.
Gary, I've told you this before: If you continue to browse the net looking for horror stories then you will find them. So let's put things in perspective here:
1) There are 91 comments on that web page the vast majority of whom are early cases. That's 91 out of millions who get CPPS.
2) There are some long term cases there. These are the exception, not the rule.
3) Any web based forum is going to be composed of a disproportionate number of severe and long term sufferers. This is because people who are no longer bothered by their symptoms very rarely post in these groups. That's the real reason why it looks like no-one's getting better. However, very often you will read someone saying "Hey! I'm feeling better" and then they stop posting because it no longer rules their lives. This forum is the exception to the rule but all of the longer term users will tell you that people fade away when their problems resolve.
4) A number of these people almost certainly do not have chronic prostatitis / chronic pelvic pain syndrome but some other complaint.
5) Whilst no-one can guarantee that you will get 100% better it is likely that you will get your life back. You may have to settle for 90% or so and make some changes but tough s**t. That's just the way it is.
6) The more you worry about it, the longer it will take to get better.
Now do the following:
a) Close your browser.
b) Stand up.
c) Take a deep breath.
d) Slap yourself.
e) Repeat "I must stop looking for worst case scenarios on the net" a hundred times.
f) Relax.
You WILL get better. I can't guarantee it'll be 100% but you will be able to live a full and happy life but it's going to take time and effort. Now go and read the success stories and stop worrying.
Gary, I've told you this before: If you continue to browse the net looking for horror stories then you will find them. So let's put things in perspective here:
1) There are 91 comments on that web page the vast majority of whom are early cases. That's 91 out of millions who get CPPS.
2) There are some long term cases there. These are the exception, not the rule.
3) Any web based forum is going to be composed of a disproportionate number of severe and long term sufferers. This is because people who are no longer bothered by their symptoms very rarely post in these groups. That's the real reason why it looks like no-one's getting better. However, very often you will read someone saying "Hey! I'm feeling better" and then they stop posting because it no longer rules their lives. This forum is the exception to the rule but all of the longer term users will tell you that people fade away when their problems resolve.
4) A number of these people almost certainly do not have chronic prostatitis / chronic pelvic pain syndrome but some other complaint.
5) Whilst no-one can guarantee that you will get 100% better it is likely that you will get your life back. You may have to settle for 90% or so and make some changes but tough s**t. That's just the way it is.
6) The more you worry about it, the longer it will take to get better.
Now do the following:
a) Close your browser.
b) Stand up.
c) Take a deep breath.
d) Slap yourself.
e) Repeat "I must stop looking for worst case scenarios on the net" a hundred times.
f) Relax.
You WILL get better. I can't guarantee it'll be 100% but you will be able to live a full and happy life but it's going to take time and effort. Now go and read the success stories and stop worrying.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
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garyholc
- Old Hand
- Posts: 408
- Joined: Sun Jun 24, 2007 12:11 am
- Location: Cardiff, South Wales UK
Lol Sleeper, have taken your advice. :)
I've also started swimming again, and trying to relax more, and start doing yoga on Friday.
I read somewhere on this forum a comment which really made me look at this condition in a different light. can't remember who made it but it said that they were glad to get this condition because it made them realise their pace of life was too fast and their body couldnt cope, and now they have changed their lifestyle because of it they are much happier. Certainally gave me a bit of inspiration.
I've also started swimming again, and trying to relax more, and start doing yoga on Friday.
I read somewhere on this forum a comment which really made me look at this condition in a different light. can't remember who made it but it said that they were glad to get this condition because it made them realise their pace of life was too fast and their body couldnt cope, and now they have changed their lifestyle because of it they are much happier. Certainally gave me a bit of inspiration.
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
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adrianclark
- Beginner
- Posts: 26
- Joined: Tue Jun 19, 2007 8:30 pm
- Location: London
I'll be interested to hear how you get on with the yoga, Gary... there's a little studio just round the corner and I'd been half-thinking of giving it a try. I think I just have an irrational fear of being the only bloke in a room of middle-aged housewives... 
I definitely agree with what you were saying/quoting about making lifestyle changes. It might not take much of a change, either... having learned how much all this stretching and relaxing has helped me, I'm now finding I can go back to a few things I'd been avoiding for fear of worsening the symptoms.
Without being completely daft, I've upped my alcohol and caffeine intake (close to what I'd consider my "normal" levels) and started running more at the gym, without any obvious negative effects. As long as I do the regular stretching and deliberate relaxing, it seems to keep the symptoms at bay.
I definitely agree with what you were saying/quoting about making lifestyle changes. It might not take much of a change, either... having learned how much all this stretching and relaxing has helped me, I'm now finding I can go back to a few things I'd been avoiding for fear of worsening the symptoms.
Without being completely daft, I've upped my alcohol and caffeine intake (close to what I'd consider my "normal" levels) and started running more at the gym, without any obvious negative effects. As long as I do the regular stretching and deliberate relaxing, it seems to keep the symptoms at bay.
Age: 38; Onset: 38; | Symptoms: the famous "golf ball" sensation, irrational feel of needing to urinate, feeling of "fatigue" in pelvic floor, general lack of energy... all symptoms fairly mild and isolated; | Helped By: relaxation, stretching exercises, (possibly) alcohol, hot baths, sleep; | Worsened By: over-exertion (suddenly running without warming up), possibly excessive sedentary work
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garyholc
- Old Hand
- Posts: 408
- Joined: Sun Jun 24, 2007 12:11 am
- Location: Cardiff, South Wales UK
Yeah ok, I go on Friday, been told there are 2 other blokes in the class, so I won't look a complete prat. Am a little worried though. I have started drinking wine again, and havent really had any major effects from it. Apart from a headache the next day. Also had a curry last night and feel fine today. I have been riding my motorbike and finding that it really helps take my mind off things.
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
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Gettingbetter
- Intermediate Member
- Posts: 72
- Joined: Thu Jan 29, 2004 8:48 am
- Location: Sweden
yeah he is a fool alright who doesn't listen to anyone but himself! I tried to help several people on the forum on that page by telling them to read the success stories on these pages. When he saw that he immediately banned me from the forum 
Age:33 | Onset Age: 18 Old | Symptoms:Tight feeling in the pelvis and abdomen, burning in urethra and tip of penis,perineum, discharge from penis when it was the worst
Current symptoms: Mild discomfort in perineum, sometimes stomachaches
Helped By: Relaxation,breathing exercise, stretching,positive thinking, internal/external massage | Worsened By:Stress, too much sex/masturbating, Eating to large meals, Alcohol(day after)
Current symptoms: Mild discomfort in perineum, sometimes stomachaches
Helped By: Relaxation,breathing exercise, stretching,positive thinking, internal/external massage | Worsened By:Stress, too much sex/masturbating, Eating to large meals, Alcohol(day after)
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carld
- Retired Mod
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- Joined: Mon Aug 21, 2006 11:49 pm
- Location: Newbury Park
I sure don't miss those days of searching the net and reading only how painful and not curable Prostatitis is and the missery behind it.
This site is the only one any man should depend on to get cutting edge info and help themselves by empowering through knowledge, proactive involvement and dedication.
This site is the only one any man should depend on to get cutting edge info and help themselves by empowering through knowledge, proactive involvement and dedication.
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.
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.