Need Some Serious Help (GARYS case)

Male pelvic pain, prostatitis, IC
GARYS
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Post by GARYS »

Thank you Webslave!!
Age:33 | Onset Age: 20 | Symptoms: burning urethra after urinating, followed by rush to urinate again, rectal pain after a bowel movement sometimes, frequency. | Helped By: Pyridium and Ativan | Worsened By: stress, sitting and unknown reasons.
GARYS
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Decongestants?

Post by GARYS »

I seen my doctor taday for this spaced out feeling in my head and she looked in my ears and said she did see some fluid that she said is probably causing my symptoms. She gave me some sample of a nasal spray called Nasacort AQ (triamcinolone acetinide). I told her before she went and got these samples for me that I wasn't comfortable with any type of decongestants. Does anyone know if this is one? She also switched me from Atarax to Clarinex. I'm unfamiliar w/ both and wanted some advice.
Thanks
Gary
Age:33 | Onset Age: 20 | Symptoms: burning urethra after urinating, followed by rush to urinate again, rectal pain after a bowel movement sometimes, frequency. | Helped By: Pyridium and Ativan | Worsened By: stress, sitting and unknown reasons.
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carld
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Re: Decongestants?

Post by carld »

GARYS wrote:I seen my doctor taday for this spaced out feeling in my head and she looked in my ears and said she did see some fluid that she said is probably causing my symptoms. She gave me some sample of a nasal spray called Nasacort AQ (triamcinolone acetinide). I told her before she went and got these samples for me that I wasn't comfortable with any type of decongestants. Does anyone know if this is one? She also switched me from Atarax to Clarinex. I'm unfamiliar w/ both and wanted some advice.
Thanks
Gary
Nasacort is a corticosteroid and should be fine to take. I take it everyday with no ill effects to my condition.

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 kevin »

Yeah, corticosteroids are different from the typical decongestants that are warned against.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.

Not medical advice. Consult your doctor.
GARYS
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Abdominal TPs / Again?

Post by GARYS »

I was seeing a massage therapist about 5 months ago and she said I had some pretty bad TPs in my abdomen and started treating them. At first I thought it was helping, but stopped when she said she no longer felt them. (I think she backed off because I told her after the last couple of treatments it felt like my colon or intestines were irritated). Anyway I have been under a lot of stress lately w/ my construction business (most recently we have been hanging a lot of siding, not that its heavy work, but we havent had any walkboards so its been up and down the ladders w/ a lot of stretching and reaching in odd positions) and I think those abdominal TPs are worse now than ever, I can feel sore/hard spots there and I am getting what I think is similar to what Scoobysnacks talks about w/ hiccups before urinating except mine come at the end of urinating and cause my urethra to burn and feel like I need to constantly urinate. I also ordered cystoprotek today. I've been taking BPQ and before that Quercetin w/ no effect except in my wallet. Does this sound like what I did w/ the work and should I call this girl back or try to find someone in St. Louis w/ more experience if there are any?
Thanks
Age:33 | Onset Age: 20 | Symptoms: burning urethra after urinating, followed by rush to urinate again, rectal pain after a bowel movement sometimes, frequency. | Helped By: Pyridium and Ativan | Worsened By: stress, sitting and unknown reasons.
GS
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Post by GS »

Don't waste your time and money on supplements. Call Dr. Wise and enroll in one of the Stanford clinics. They can refer you to a local PT following your clinic. I tried everything else and nothing but the Stanford/Wise-Anderson Protocol worked for me. Get yourself a Theracane to treat the abdominal trigger points yourself. Valium helps for flareups.
Age: 39 | Onset Age: 32 | Symptoms: urethral burning, increased urge to urinate, pain after sex, rectal fullness, now much better 6 years into Stanford/Wise-Anderson Protocol | Helped By: PT(trigger point therapy), paradoxical relaxation, valium, hot bath, stretching, Theracane | Worsened By:too vigorous sex, skipping stretches and daily relaxation
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Post by webslave »

GS is right.
Good News! The great ProstaQ is BACK at last! You must try it.

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GARYS
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Post by GARYS »

I would be on the next flight to see Dr. Wise, but to be honest I'm scared because in the past when I would get internal PT done it would cause such horrible flare ups that I wanted to die and that was just one treatment every 2 weeks. I couldnt imagine going in and being treated every day for a week. What if things flared up so bad after my first session that I couldnt do it the next day? Now I can deal w/ pain but the urethral thing is unbearable. Has this ever happened to anyone?
Age:33 | Onset Age: 20 | Symptoms: burning urethra after urinating, followed by rush to urinate again, rectal pain after a bowel movement sometimes, frequency. | Helped By: Pyridium and Ativan | Worsened By: stress, sitting and unknown reasons.
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Post by webslave »

Call David Wise and ask him that question directly, is my advice. He's very approachable.
Good News! The great ProstaQ is BACK at last! You must try it.

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Post by scoobysnacks »

GARYS wrote:I would be on the next flight to see Dr. Wise, but to be honest I'm scared because in the past when I would get internal PT done it would cause such horrible flare ups that I wanted to die and that was just one treatment every 2 weeks. I couldnt imagine going in and being treated every day for a week. What if things flared up so bad after my first session that I couldnt do it the next day? Now I can deal w/ pain but the urethral thing is unbearable. Has this ever happened to anyone?
DW tells a story of a guy that was so bad all they could do at first was simply touch the sphincter, any insertion was unmanageable. They will go at your pace.

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
GARYS
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4 months good/ today not?

Post by GARYS »

I havent posted for a while and I have been doing pretty good, until today. This will probably sound pretty dumb but back before this all started one thing I really enjoyed doing was going out with friends and drinking some beer. Not and alcoholic, but I really enjoyed it. Anyway about 10 years ago I gave it up (also started a family 7 years ago), but I have always missed that relaxing feeling, not to mention all of the other things I gave up like caffeine, spicy foods etc.. I have always been very tense and I guess this helped. A few months ago I decided to try having some beer and it felt great although I was so scared about doing it but I noticed I had no symptoms at all, even this weird feeling in my head cleared up for the following days. As things would start again I would drink some beer again and things would be good again. I have been doing this for the last few months. The last time I drank was Thursday because I stayed out a little late and my wife was furious and actually took my children Friday night and didn't come home until Saturday. Anyway not sure what happened but today things returned. I have always had a large supply of valium or Xanax but I never take them because even at large doses they have no effect on me. I would like to say the alcohol is relaxing my muscles, but why wouldnt the other meds? I really hope this only lasts today and I will be ok again tomorrow. Make any sense? One other problem I have been having is a lot of rectal itching (feels right inside the rectum so I have been applying this cream. Anyone know what causes this itching? I was thinking maybe the cream could possibly be helping or maybe not.
Age:33 | Onset Age: 20 | Symptoms: burning urethra after urinating, followed by rush to urinate again, rectal pain after a bowel movement sometimes, frequency. | Helped By: Pyridium and Ativan | Worsened By: stress, sitting and unknown reasons.
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Post by webslave »

It is possible that you are resistant to some benzodiazepines like valium and Xanax. Alcohol could be the one thing that relaxes you, unfortunately, because it looks like either the tension caused by the marital stresses are provoking a relapse OR your intolerance of the alcohol, or the gluten in beer, is slowly re-emerging as you consume more and more of it, flaring the CPPS.

In your shoes, I'd —
  • stop drinking and save the marriage
  • ask your doctor for different types of benzos; just because you have not reacted to the ones you have taken does not mean you won't react to all of them
  • when you do take benzos, do so only occasionally and not for more than a day or two
Good News! The great ProstaQ is BACK at last! You must try it.

HAS THIS SITE HELPED YOU?
Say Thanks by donating. Keep the
Forum alive on the Internet!
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GARYS
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A year better, but...

Post by GARYS »

For about a year I have been about 80% pain free after suffering for over a decade. Over the past few weeks I have been very stressed out but still seemed alright, then I came down with some kind of cold. It all seems to be returning, a flare up I guess, but I can't get the thought out of my head that its back and I cannot deal with that and all the strain it puts on my mind (makes me crazy). I know flare ups are normal, but I need some convincing that this will pass again. Any advice would be appreciated. Thanks
Age:33 | Onset Age: 20 | Symptoms: burning urethra after urinating, followed by rush to urinate again, rectal pain after a bowel movement sometimes, frequency. | Helped By: Pyridium and Ativan | Worsened By: stress, sitting and unknown reasons.
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Jay
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Re: A year better, but...

Post by Jay »

Hi Gary,

Congrats on a year of 80%! That is a great accomplishment.

Unfortunately, we have a condition which is always with us, even when it's quiet. Sometimes it rears its ugly head and gives us a good slap, if only to remind us of that fact. If you had a year of such good relief, then I'm sure you can nip this in the bud and get back on track.

What did you do to recover the first time around? Think back on the process you went through and consider retracing those steps. If you were helped by PT, this also sounds like a good time to go in for a check up.

Don't panic, and don't let that disaster spiral get into your thoughts. It'll only hurt you. :smile:
I am not a physician. This is not medical advice. Consult your doctor!

Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
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Re: A year better, but...

Post by carld »

GARYS wrote:Over the past few weeks I have been very stressed out
Hi Gary,

Your stress has just put you in a flair so control the stress and anxiety as best you can and quiet the mind's catastrophic thinking you are in right now. :-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.