Hi all,
Just a couple of questions for sufferes if you could offer your opinion please
1. Do you believe that you'll ever be completely free of the fear of CPPS even if you are symptom free. I notice that even the most successfull of us at beating our symptoms hold this fear to some extent.
I personally find that accepting that you may always fear chronic prostatitis / chronic pelvic pain syndrome goes a big way towards dissipating the fear somewhat. Like anyone who may have suffered loss or major illness I think you have to try to accept as a human being that you are vulnerable to fears, doubts when difficulties arise in life. That way they do not have such a hold over you!
2. What have you gained from having CPPS? I'm not going to qualify this question but I do appreciate that sufferers in the first years or so may still be in the territory of "absolutely nothing" !
Thanks
Greg
Two questions
Two questions
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
Re: Two questions
After having this so long on and off I refuse to live in fear of it as I've come through very bad times before including a remission for 4 yearsGP2 wrote:Hi all,
Just a couple of questions for sufferes if you could offer your opinion please
1. Do you believe that you'll ever be completely free of the fear of chronic prostatitis / chronic pelvic pain syndrome even if you are symptom free. I notice that even the most successfull of us at beating our symptoms hold this fear to some extent.
I personally find that accepting that you may always fear chronic prostatitis / chronic pelvic pain syndrome goes a big way towards dissipating the fear somewhat. Like anyone who may have suffered loss or major illness I think you have to try to accept as a human being that you are vulnerable to fears, doubts when difficulties arise in life. That way they do not have such a hold over you!
2. What have you gained from having CPPS? I'm not going to qualify this question but I do appreciate that sufferers in the first years or so may still be in the territory of "absolutely nothing" !
Thanks
Greg
Accepting was big thing for me at first but I suppose I eventually gave in after docs told me to live with it and it usually gets better in my case they have been right even though it always comes back .If you had athritis or another disease you would except it so why not this one.Accepting this is the way you are for now can stop unwanted stress and anxiety.
I have not learned much from this apart from every pain killer etc on the market
I wish I never had it but I do and try to make the most of everthing and look at someother diseases and think well maybe I'm lucky
Last edited by graeme on Tue Nov 27, 2007 12:59 pm, edited 1 time in total.
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
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1. I only fear when I'm flared up (like now). When it's in abeyance, even though it's still palpable (my 1-5%), I really don't think about it at all.
2. I'd be really scraping the bottom of the barrel to find positives in this. If I got a cut of my urologist's pay for doing his job I'd be happier ;->
2. I'd be really scraping the bottom of the barrel to find positives in this. If I got a cut of my urologist's pay for doing his job I'd be happier ;->
Richard
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
I no longer fear this condition because that only will feed into this. If I'm having some discomfort, I now know it will pass as long as I avoid the things that can irritate like diet and stress.
What I have learned....To much to go over in a thread so I will try to be brief.
I learned a lot about the prostate gland and a lot about medication
I learned that what I have is my body and mind at dis-ease not that I have a disease. So taking care of my self and doing the right thing for my self and my family is my focus.
I have a greater appreciation for all things in life that mean something to me.
Days that I feel normal and I have many of those days now, allows my self to be grateful and in the moment of now more. I try not to think about the future of my condition and just be in the power of now. Flow with feeling great and flow with not feeling so great.
In the end, we are all in control of this dis-ease in our mind and body and work twards easing the mind and body. The rest will follow.
What I have learned....To much to go over in a thread so I will try to be brief.
I learned a lot about the prostate gland and a lot about medication
I learned that what I have is my body and mind at dis-ease not that I have a disease. So taking care of my self and doing the right thing for my self and my family is my focus.
I have a greater appreciation for all things in life that mean something to me.
Days that I feel normal and I have many of those days now, allows my self to be grateful and in the moment of now more. I try not to think about the future of my condition and just be in the power of now. Flow with feeling great and flow with not feeling so great.
In the end, we are all in control of this dis-ease in our mind and body and work twards easing the mind and body. The rest will follow.
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.
I have accepted this condition as part of me, really. Like others on the forum, when it doesn't hurt I don't think about it much. Actually, when it hurts moderately, I don't think about it much. Its only when it really hurts and I have to lie down for awhile or sleep that I get bummed out about it. I can live with it and that's OK. I have also learned a lot about the limitations of doctor's knowledge, a lot about medications and how to avoid them if possible, and I have learned to appreciate a good stiff drink.
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
Thanks all. Some good stuff there!
Something I think we all have gained surely is a resilience in our character?? Dont you find that having chronic prostatitis / chronic pelvic pain syndrome makes other events in life less fearful? Dont you feel like you can handle tough times after surviving so long with this and not ending up in a funny farm?? I mean most of us work, have good relationships, have children, play sport despite CPPS. Isn't this to be applauded?? Particularly as being males in a driven, competitive, at times unfair world where our masculinity prevents us from being depressed about something that by all accounts is one of the worst conditions one can suffer from!
And surely chronic prostatitis / chronic pelvic pain syndrome has taught us to handle our stress and anxiety better as well as to listen to our body when it screams at us to stop and slow down??
Something I think we all have gained surely is a resilience in our character?? Dont you find that having chronic prostatitis / chronic pelvic pain syndrome makes other events in life less fearful? Dont you feel like you can handle tough times after surviving so long with this and not ending up in a funny farm?? I mean most of us work, have good relationships, have children, play sport despite CPPS. Isn't this to be applauded?? Particularly as being males in a driven, competitive, at times unfair world where our masculinity prevents us from being depressed about something that by all accounts is one of the worst conditions one can suffer from!
And surely chronic prostatitis / chronic pelvic pain syndrome has taught us to handle our stress and anxiety better as well as to listen to our body when it screams at us to stop and slow down??
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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Difficult to say. I was a fit and active guy before this and am only just starting to take steps back towards that - I'm doing light training and socialising just now.
My symptoms aren't fantastic but, frankly, they just don't bother me as much as they did because they're a lot better than they were. Of course I hope they continue to improve but it's just a relief to have my life back to a large degree.
Thing is, if I felt like I do now at the start I'd probably be quite down. It's just that after a year and a half of continuous discomfort and pain this is miles better.
My symptoms aren't fantastic but, frankly, they just don't bother me as much as they did because they're a lot better than they were. Of course I hope they continue to improve but it's just a relief to have my life back to a large degree.
Thing is, if I felt like I do now at the start I'd probably be quite down. It's just that after a year and a half of continuous discomfort and pain this is miles better.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
After my original 3 years with chronic prostatitis / chronic pelvic pain syndrome I'd agree with the resilience. However, my coping skills vanished when I didn't have to cope with it any more; so now when I get a flare I am actually less resilient and more fearful than I was at the end of the 3 years.GP2 wrote:Something I think we all have gained surely is a resilience in our character?? don't you find that having chronic prostatitis / chronic pelvic pain syndrome makes other events in life less fearful? don't you feel like you can handle tough times after surviving so long with this and not ending up in a funny farm??
I've never let my masculinity hold me back from being depressedGP2 wrote:our masculinity prevents us from being depressed about something that by all accounts is one of the worst conditions one can suffer from!
Again, at the end of 3 years I was very 'down shift my job/don't get stressed/listen to your pelvis' - but then I wanted to buy nice things and not be managed by incompetents, so I had to get some responsibility again. It's rubbish.GP2 wrote:And surely chronic prostatitis / chronic pelvic pain syndrome has taught us to handle our stress and anxiety better as well as to listen to our body when it screams at us to stop and slow down??
Richard
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
Yeah Rich after pain free periods a return of symptoms is hard to bear. I have found this also. I do believe though, that just because you're in a stressful job again (as I am) that much can be done to keep pain down. I am an arrest offiver for the immigration arrest team in Birmingham. Wearing stab vests into addresses and the works. 
I have stress in my job but there's a multitude of things I can do to releive the pain caused by the stress
I have stress in my job but there's a multitude of things I can do to releive the pain caused by the stress 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
Bloody hell. That does sound stressful.GP2 wrote:I am an arrest offiver for the immigration arrest team in Birmingham. Wearing stab vests into addresses and the works.
I can see now why you made the comment about masculinity and not being allowed to show depression. I work in a university where it's practically de rigueur to be a bit upset
I don't claim to have a stressful job per se, but I know that above a certain level of responsibility I can't handle the stress.
Richard
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
It is yes but in a way that I like. It doesnt effect my pelvis (worrying about nasty individuals and officer safety) as public speaking situations would.Bloody hell. That does sound stressful.
I can see now why you made the comment about masculinity and not being allowed to show depression. I work in a university where it's practically de rigueur to be a bit upset
I don't claim to have a stressful job per se, but I know that above a certain level of responsibility I can't handle the stress.
Its interesting that you say that above a certain level of responsibility you can't handle stress. I think most of us including "healthy" individuals have an "anxiety neurosis" when it comes to responsibility and promotion on the workplace.
Personally, I know that if I were a manager or in public speaking situations every day then my pelvis would be in trouble. In fact although I like my current job I won't do it for long because I dont fancy being a guinea pig for the government - basically a glorified policeman!!
Ultimately the day my pelivic pain goes for good is the day I truly follow my heart and my greatest loves - books and the outdoors. A writer living in the lake district perhaps
But I'm not naieve and we all know that its easier said than done not working for the dollar and paying those bills 
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
Great goal. Live the dream!GP2 wrote:Ultimately the day my pelivic pain goes for good is the day I truly follow my heart and my greatest loves - books and the outdoors. A writer living in the lake district perhaps
Richard
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.