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Finally Some success

Posted: Fri Jan 31, 2003 3:03 pm
by Carlton Higgins
Well, it has been over 6 weeks since my symptoms stopped completely, so I feel it is safe to write a success story....

I came down with full-blown Chronic Prostatitis in September of 2002. Interestingly enough, I had "odd symptoms" here and there, before the disroder fully manifested itself; some pelvic pain. A lot of urination. When it finally did take hold, I had urgency and frequency from hell. Urinating 10-14 times day, waking up a night, and having pain-discomfort in the penis and occassionally in the testicles.

I went to the doctor, and he did a digital rectal exam and asked me a bunch of questions. He then prescribed Flomax, which I have been on ever since (.4mg). Initially, the Flomax helped increase the volume of urine I could pass, but seemed to do little else. I wasn't until 4 weeks in, that urgency/frequency began to go down dramatically. I still had some annoying pain and discomfort in the penis.

Soon after the disorder set in, I quit drinking alcohol and caffeince completely. I haven't had a drink in over 2 months. I also cut down on spicy food. I tried to sit less and be more active. Here is my regimen:

1. Take Flomax at night before bed
2. Take Prosta-Q and Algonot twice a day.
3. Avoid alcohol and caffeine, and even chocolate
4. Avoid spicy food
5. Exercise every morning; running for 20 minutes, lifting wieghts, situps, etc. Follow this up with swimming and a session in the hot tub. I do this 6 times a week.
6. Ejaculate once every few days.

I also went on Effexor for anxiety. While the drug helped with anxiety and depression, it had horrible side-effects. Fatigue (I couldn't stay up past 9pm), constipation from hell, and some major withdrawl which included vertigo, blurry vision, etc. I don't recommend it, even though it didn't seem to impact my Prostatitis.

Hopefully I have this thing licked, but it is still pretty early. I sleep through the night now (for the first time in about 10 years), and urinate about 5-6 times a day, which is normal. I haven't had pain in over a month. The only thing I am unclear about, is what will happen when I go off the Flomax.

Posted: Tue Feb 18, 2003 8:08 pm
by Bill in NH
When did you start taking Prosta Q and Algonot relative to when you started on Flomax? Do you have a sense for their effectiveness relative to that of Flomax? My symptoms, which are nearly identical to what yours were, started in early January 03. They are better now than they were initially, but still very bothersome (persistent pain in penis). I have eliminated alcohol, caffeine, chocolate, and spicy and acidic foods from my diet, maintained exercise, started taking Prosta Q 3 wks ago, and have Algonot on order. My urologist wrote me a prescription for Flomax, but I have not yet filled it (still hoping to get better without it).

Have you stopped taking Flomax? Are you still symptom free?

Posted: Wed Mar 05, 2003 1:28 am
by Carlton Higgins
Hi Bill,

I went off the Flomax a couple weeks ago and am still symptom-free. I've even had some alcohol and spicy food in the last couple weeks, and neither caused a problem (I was basically trying to see if one or the other caused irritation).

I'm still taking Algonot and Prosta-Q, but I may go off those as well -they are expensive. I can get glucosamine and quercetin at the health food store.

I still exercise on a regular basis. I don't eat red meat, and I totally avoid caffeine and artificial sweetners.

I recommend Flomax -it has few side-effects, save for drowsiness (you just take it at night) and occasional retrograde ejaculation (usually only in the beginning).

The toughest thing to get rid of was the pain in the penis. I abstained from sex for a month or so because I thought it would make it worse. Totally the opposite. Regular ejaculation actually made it better, until it went away altogether.

Strange disease indeed.

Flomax

Posted: Thu Mar 13, 2003 2:55 pm
by Bill in NH
Hi Carlton,

Thanks for your response and encouragement.

I still haven’t yet tried the Flomax because I still seem to be improving without it. In fact, I was just about to start drafting my own success story recently after three nearly symptom-free consecutive days. Unfortunately, my urgency returned yesterday and now I have a steady discomfort - not quite pain - in my penis again. If it’s not better in a day or two I think will start the Flomax.

For how long did you take the Flomax?
How long after you started did your symptoms finally disappear?

I have also recently found - much to my relief - that ejaculation no longer seems to make my symptoms worse, although it sure seemed to in the beginning. In fact, my very first symptoms, which occurred only sporadically before my full blown presentation in January, occurred only after ejaculation. Perhaps in cases like ours, the quercetin decreases the oxidative stress in the semen so that it is no longer irritating and possibly soothing to the mildly inflamed urethra.

Posted: Tue Mar 18, 2003 6:38 pm
by Carlton Higgins
Bill,

I took the Flomax for 3 months. For the first couple of weeks, it seemed to have no effect. After 3 weeks there was a decrease in urgency and an increase in urine volume. After 4 1/2 weeks, there was a significant reducation in urgency, and I could sleep through the night. I have been off the Flomax for about 1 1/2 months, and I have been fine.

The pain in the penis was very strange. It came on well into my bout with CPPS, and after I started taking the Flomax. It lasted for about a month, to no avail. During that time, I didn't have any sex or ejaculate. Finally, one day I said the hell with it and had sex. While the initial ejaculation was a bit uncomfortable, the pain in the tip of the penis began to subside. I had also started taking Algonot and Prosta-Q, and these supplements may have helped.

I occasionally have alcohol now, and it doesn't seem to bother me. I have completely ruled out caffeine though. I had some salsa the other night, and didn't have a flare up -I was thrilled!

The theory about Quercetin sounds interesting -quite possible.

It should be noted that ever since I was a teenager, I always urinated more than the next guy. It wasn't until CPPS appeared that it became a real problem. I wonder how many other guys had frequent urination before CPPS ever appeared?

Flomax, etc.

Posted: Tue Mar 18, 2003 10:03 pm
by Bill in NH
Carlton,

Thanks for describing your experience with Flomax. I finally started taking it (0.4mg at night) last Friday night after a brief exacerbation of my discomfort and urgency. The Flomax immediately increased my flow rate, which wasn't bad to start. Although I haven't had any decrease in discomfort or urgency yet, I won't expect any for at least few weeks.

I'm still taking Prosta-Q and Algonot and staying away from caffeine, spices, chocolate and most forms of alcohol. However, I don't seem to have any problem with red wine and my discomfort and urgency often seem to significantly abate after just 2 or 3 glasses.

I'm also still exercising 4-5 times per week. My main activities are 30 minutes on the elliptical trainer or running at an easy to moderate pace (my two worse flares to date occurred after hard runs). Curiously, I almost always feel much better during and immediately after my workout -often symptom free -but almost always have an exacerbation of discomfort and urgency a few hours later. I suspect that this exacerbation is caused by a decrease in urine pH and a marked increase in potassium concentration, which have been shown to occur with exercise. Good hydration helps but doesn't eliminate the problem so I'm currently experimenting with various dosages of alkalinazing agents, such as Alka-Selter.

I also had some bouts of discomfort and urgency when I was younger -back to my 20s -but the bouts were so infrequent and short-lived that I never thought much about them at the time. I wonder if I was destined to eventually develop full blown CPPS or if I only did so because of three other factors this January - some emotional stress, drinking tons of cranberry juice and tea, and severely cold weather, even for NH.

Re: Flomax, etc.

Posted: Tue Mar 18, 2003 10:24 pm
by webslave
Bill in NH wrote:I don't seem to have any problem with red wine and my discomfort and urgency often seem to significantly abate after just 2 or 3 glasses.
You may benefit from Benzodiazepines, which can relax you (and your muscles) even more deeply than alcohol.
(after excercise I)always have an exacerbation of discomfort and urgency a few hours later.
Excercise is a mast cell trigger, and this could be the cause.
I also had some bouts of discomfort and urgency when I was younger -back to my 20s -but the bouts were so infrequent and short-lived that I never thought much about them at the time. I wonder if I was destined to eventually develop full blown CPPS or if I only did so because of three other factors this January - some emotional stress, drinking tons of cranberry juice and tea, and severely cold weather, even for NH.
Yes. A set of triggers (all mast cell trigers that you name, interestingly), could have set it off and running.[/quote]

Posted: Tue Mar 18, 2003 10:45 pm
by Bill in NH
[You may benefit from Benzodiazepines, which can relax you (and your muscles) even more deeply than alcohol. ]

Yes, in fact I do. I take Valium 2mg at bedtime prn, about once per week. However, I prefer the red wine with dinner and company!

[Excercise is a mast cell trigger, and this could be the cause. ]

Can you give me a reference? I don't have nearly the side effects I had at first, so I'm not sure if I'm improving or exercising and hydrating more wisely.

Posted: Tue Mar 18, 2003 11:25 pm
by webslave
Exercise-induced asthma is well known, as are other exercise induced mast cell degranulatory disorders such as Hives.

You can find the list of known mast cell triggers all over the net. Here is a short version of that list (not all people react to all triggers. Most normal people react to none, and some of us to just one):

Medications - such as antibiotics, aspirin and codeine.
Foods - such as shellfish, eggs, nuts, chocolate, cheese, tomatoes, soy products and strawberries.
Some food additives.
Infections - including bacterial, viral or parasitic.
Certain underlying conditions - such as systemic lupus erythematosus, rubella and hepatitis.
Emotional stress.
Certain plants.
Sunshine and heat.
Cold temperatures.
Exercise and sweating.
Bee and wasp stings.

Posted: Sat Mar 22, 2003 6:39 pm
by Carlton Higgins
I occasionally get a little discomfort after eating chocolate, milk, and soy products. Decaf coffee is also a problem. Caffeine is a BIG no no for me, virtually at any level. Strangley enough, alcohol does not seem to be a problem. I had a few beers last night, and had no discomfort.