Sort of a success story...

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Sleeper Service
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Sort of a success story...

Post by Sleeper Service »

I say 'sort of' because I'm not 100% cured but, to be honest, my symptoms are generally pretty minimal these days. Sure, I get the odd bad day now and then but these bad days are equivalent to my good days when this condition was at its worst - or even when it started getting better a couple of years ago. Overall I'd say that I'm about 85-90% there and my symptoms don't interfere with my day to day life.

I won't go through my case history as my post history kind of covers it off. Suffice to say that my circumstances were slightly different from the usual chronic prostatitis / chronic pelvic pain syndrome patient and that I needed surgical treatment to start getting better. This may not - and in all honesty probably will not - be the case for you. Now, over two years after the operation, I've found a process of stretching, relaxing and getting fitter (over the last year I've lost 22 pounds) have really helped. My remaining symptoms are a slightly raw feeling at the tip of the penis and sometimes the feeling of a slightly full rectum. My frequency and sex drive are back to normal.

What helped besides relaxation and stretching? Well, I found Quercetin, Fish oil, Glucosamine and Chondroiton and MSM to help although I couldn't quantify how much. Time, of course, is also a great healer as is getting back into a routine. I particularly found I improved when I started exercising again and this remains the case today.

Will I ever get to 100%? Don't know. Does it bother me that much? Not really because, you see, life is actually pretty good. I go out, I go on holiday, I cycle, I drink, I play drums and it's great. Three years ago when this disorder really kicked in all I could do was to lie flat on the floor for 16 hours a day before going to bed, constantly felt I needed to pee, had various pains and discomforts and was off work for 14 months. After my operation the implementaton of the stretching and relaxation regime prescribed by Dr Wise and the use of the supplements recommended by Dr Shoskes seemed to do the rest. That and - as mentioned - time.

I'm writing this to illustrate three things:

1) Everybody is different. You really need to follow every avenue to find out what works for you.
2) When you find something it's not an instant fix. It takes time and effort and that's going to be measured in months and years, not days.
3) Your odds of getting better are very, very good. Stick in there. It'll happen.

I'd like to thank the administration and moderation staff. Although we have not always seen eye to eye I appreciate the existence of this site and the wealth of reference material within. For many frightened and confused men this site offers an oasis in a desert of despair. I was one such man.

I tend to visit here every few weeks to see how things are going. Hopefully I'll continue to have good news to report and will continue to notice the gradual impovements of those who take heed of the advice offered. Gentlemen: it's in your hands! :)
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
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carld
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Re: Sort of a success story...

Post by carld »

Sleeper Service wrote:
Will I ever get to 100%? Don't know. Does it bother me that much? Not really because, you see, life is actually pretty good. I go out, I go on holiday, I cycle, I drink, I play drums and it's great. Three years ago when this disorder really kicked in all I could do was to lie flat on the floor for 16 hours a day before going to bed, constantly felt I needed to pee, had various pains and discomforts and was off work for 14 months.
Hi Sleeper,

Good to hear from you again my friend...Excellent post, I could not agree any more than the above statement. This encapsulates all that I feel about UCPPS...we have spoken many times and I'm very happy to read this post... :)

Be well and keep in touch! :-D
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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graeme
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Re: Sort of a success story...

Post by graeme »

Great news sleeper I'm not to bad myself, as it goes, as long as I stick to rules. Big test for me in 12 weeks time — new one due. 2 years ago I flared out of remission after my first was born. Stay with the board sleeper you helped me at times. :wink:
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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Sleeper Service
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Trigger point?

Post by Sleeper Service »

As some of you know, I'm doing pretty well these days. Still some minor symptoms and the odd flare (but never to more than moderate and never long lasting) but pretty happy with things in general.

One thign that I've noticed over the last few months - since I started exercising again and lost some weight - is that I get a tight feeling in the right hand side of my lower abdomen. Difficult to describe but it feels sort of restricted.

Anyway, there's nothing obvious down there and I've tried the areas suggetsed in A HEADACHE IN THE PELVIS so any suggestions welcome.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
coppertop
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Re: Trigger point?

Post by coppertop »

I had that too. Since my PT showed me some skin rolling techniques near there, the pain is mostly gone. I do it every night before bed as part of the relaxation protocol.
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
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Sleeper Service
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Re: Trigger point?

Post by Sleeper Service »

Cheers. I'll give that a go.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
torontomale
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Re: Trigger point?

Post by torontomale »

How do you find the trigger point. Is it possible to find it yourself??
Age:27 | Onset Age: 27 (Not yet confirmed, but all symptoms point to it). | Symptoms: Low back pain, tingling/picking sensation in testicles, burning scrotum, burning thighs, erectile dysfunction, fatigue | Helped By: Warm bath, mild exercise, PT massage | Worsened By: Not sure
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Sleeper Service
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An update...

Post by Sleeper Service »

...nothing much to report. Still at the 90% or so mark, still pretty happy with life, still have some minor symptoms that get slightly annoying when I have a cold.

Just back from a week in Lanzarote. Great time there and virtually no symptoms. Came back and had minor grumbles for a day then back to normal.

Life still pretty good coming up for four years in. I do everything I want and even played my first game of rugby (well 20 minutes! :-D ) for four years a couple of weeks ago. God, I'm unfit so it's back to the gym again!

I guess I'm trying to say that things get better. It requires effort and it takes time but they do. Hang in there.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
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graeme
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Re: An update...

Post by graeme »

Great to here off you sleeper I'm pretty much the same, can't touch alcohol though which I find hard :- (
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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Sleeper Service
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Four years later...

Post by Sleeper Service »

...and still doing pretty well. Minor symptoms that flare to the level of slight annoyance every now and then but no biggie.

I lift weights, cycle and play rugby and drums and enjoy a full social life. Sex life is Ok but getting older so slowing down a bit anyway! :-D

Continuing to stretch, relax and just take it as it comes. I've accepted that I may never make 100% but to be honest I don't really care because it's not that much of an issue anymore. Life goes on and is enjoyable.

So... uh... yeah. Keep working at your thing - I had 18 months of hell followed by a year of recovery followed by a year of stabilisation. You can get better too.

Cheers all. I'll pop in from time to time.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
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Re: Four years later...

Post by d_man »

Sleeper,

Thanks for the update, means a lot. Being a 33 year old dealing with this for 3.5 months, my symptoms mirror yours kinda.... I have mainly burning in right side of the penis. Before this happened whenever I was anxious I always felt I had never had a full bowel movement before I had to do something like a date, gig a lot, travel etc... I am a musician as well. Used to be a guitar teacher. Started playing again!

Yesterday was my first pain free day. No symptoms at all. At night when going out with my friends for the first time in months, I cut the night short ( midnight) just over nerves because I was so glad I was pain free that I wanted to go home and end the night on a high note. Anyway, I have been doing Physio and following HITP. What methods have you used?
33 M. Healthy Diagnosed Jan 11, 2010. 28 Days Cipro. Main prob was 24/4 Penis burn on right side of shaft and some pain between scrotum and anus. Peeing like an old man. Did a week of Broccoli treatment, and Aleve (naproxen) and now started as of Feb 18, 2010 Prosta-Q, D-Mannose and waiting for my Swedish flower pollen.
we.the.hulk
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Re: Four years later...

Post by we.the.hulk »

Sleeper.

I've got this constant irritation in urethra (burning/ache etc) also. PT said I have no trigger points internally. What helped your symptoms most do you think?
Happy to hear you are done with this monster.

Thanks
Age: 40 | Onset Age: 40 | Symptoms: burning urethra at first / now just urgency/frequency. tingle at penis tip inside urethra. | Helped By: running / stretching / good nutrition / vitamins /urelle /Xanax | Worsened By: stress/anxiety
DMcU
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Re: Four years later...

Post by DMcU »

d_man wrote: I have mainly burning in right side of the penis.
Hi! Sounds like the dorsal nerve of the penis which runs down the penis, which also indicates that this is a neuromuscular condition as this pain would probably most definitely be referred from another area, most likely in the pelvis.

We'll all get there eventually!!
Age: 25 Onset: 23. | Symptoms: Burning in urethra, urinary frequency/urgency, 'golf ball' in butt syndrome, muscle tension form pelvis to calves, constipation, IBS, testicular pain/inflam, bladder pain when nearly full, difficulty relaxing muscles (coccygeal, levator ani etc.), pain and muscles tension in anus/perineum. Helped by: quercetin, relaxation, baths, heat packs applied to perineum. Worsened by: Stress, driving, sitting, jogging, caffeine etc.
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Sleeper Service
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Re: Four years later...

Post by Sleeper Service »

My symptoms were derived from constant overexertion of the pelvic musculature due to an obstructed bladder neck. I had a small procedure to widen the neck and then relaxation, stretches and time took care of the rest.

I should point out that I'm the exception here - I had a clear physical obstruction demonstrable by a full videourodynamic test (this is not just a cystoscopy, it's a lot more involved than that) which was corrected surgically. This is extremely unlikely to be the root of the vast majority of patients' issues.

However, the chronic prostatitis / chronic pelvic pain syndrome symptoms came about from years of overcompensating for this abnormality. I guess that's one of the reasons why recovery is quite lengthy - you can't expect to unwind ten, twenty or thirty years of destructive behaviours overnight.

My main symptom is still a bit of irritation on the penis tip - it feels like I imagine having a piercing there would: not painful but you notice it from time to time. When I flare I get a bit of frequency - maybe peeing every hour to hour and a half during the day (although not all day and at nights I'm fine) and sometimes the feeling of a full bowel. These have steadily improved - I tend to find that when I flare and come out of it I feel a bit better than I did before the flare.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
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carld
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Re: Four years later...

Post by carld »

Hi Sleeper!

Good to hear from you my friend!Love to read that your slamming the drums again...Charging hard in a relaxed way...Your post was perfectly said on the 100% issue...I feel the same way. I don't care to even bother reaching it...What's the point, as long as we are enjoying life again.

Keep in touch :-D
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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