Never Give Up Hope

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Thad Noles
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Never Give Up Hope

Post by Thad Noles » Wed Nov 27, 2002 10:34 am

I was idly cruising the Web and decided to scan the CPPS website since I had not checked it in several months. I was expecting some changes and new content, but I was shocked at what I found. The home page has a new look, new content, and some minor modifications to the interface but the forum blew me away. It has evolved into something truly useful from its original inception. This new format, along with the rest of the site, is in my opinion the premiere website for all things related to prostatitis - a one stop shop for sufferers old and new. I've watched the progress of this site and I give my sincere thanks to the skill and dedication of the developers.

As I scanned the various topics in the forum, I noticed that a "Success Stories" topic was included - an excellent idea. However, I only noticed two posts. I know this is not representative of the prostatitis community at large and I considered why there is a deficiency of posts for this topic and how this might influence new sufferers.

Obviously, this might generate an impression that there are just not that many people getting better. I don't believe this is the case. Why the small number of posts then? Unfortunately, those who get better have a tendency to move on without a thought for those that are to come and how despondent they will be. This is natural as no one likes to reminisce on painful times and, as they say, time heals all wounds. With the passage of time, some previous sufferers simply forget (or try to forget) just how terrifying those first few months can be. This is unfortunate, because an encouraging word is as important as oxygen to those newly caught in the grip of this affliction. I can remember how desperately I sought reinforcement that the pain would eventually end and life would return to normal. So here's my story for you guys. Warning: I have a tendency to be verbose, so bear with me. :lol:

To put things into perspective, let me give you some background information.

I am 31 years old and I acquired prostatitis approximately at the start of 2001. I firmly believe my case is of the genetic predisposition / immune system dysfunction type. I've never had a STD, bladder, or kidney infection. I have had horrific allergies to just about everything (many different grasses, molds, foods, animals, chemicals, etc.) with the associated hives, sneezing and asthma, though that was mainly when I was young and I'm not really bothered with them now. I am an identical twin and my brother has basically the same history. I can remember little "events" occurring with what I now think was my prostate, little muscle "flutterings" and such, since I was a teenager, but nothing symptomatic (i.e., pain, urinary or sexual problems, etc.). Consequently, I knew nothing about the prostate or where it was, only that it was something that bothered "old guys".

At the start of 2001, I decided to drop a few extra pounds as a new resolution and to help me with this task, I decided to take a shortcut and utilize a thermogenic. A thermogenic is basically an ephedrine / caffeine / aspirin stack designed to raise your metabolic rate and thus help you burn more fat. The one I decided to use was Xenadrine, though they go by many names - Hydroxycut, Diet Fuel, etc. Xenadrine prides itself on using herbal sources for its stack, namely Ma Huang, Guarana root, and White Willow bark. Hey, it's all natural and herbal, so it's OK, right? I checked it out extensively and the only side effects I could locate were heart problems in a few people and aggravation of BPH symptoms in some older men. (BPH is a benign increase in size of the prostate usually only affecting men past 40). The warning on the bottle said basically the same thing.

So I thought, "Great, I don't have heart problems, and I'm only 29 so no prostate difficulties either. And look at all the testimonials! I should have no problems." Thus, I began taking Xenadrine and imagining how great it was going to be having a six pack. I told my brother about this since I remembered he had taken it about two years ago, though he stopped after only a short duration of use. Alas, hindsight is 20/20.

He told me, "I don't think you should take that. I think it messed up my prostate." He said that after about two weeks of use he began to experience a painful cramping below his navel. My brother is a bit of a stoic, and I can remember during that time he would occasionally remark that "this cramping is bugging the #$@# out of me" but that was all. I didn't notice any real difference in his behavior. I convinced myself that either his problem was just a coincidence or it was something else besides his prostate. So I began taking it despite the small voice that said maybe this was a bad idea. I told myself that I would just try it and if anything begins to happen I'll just stop. The Xenadrine ads were convincing and my desire to drop the few extra pounds was strong.

About 2-3 weeks later, on a Friday night, I knew something was wrong. It seemed as if an itch was beginning to build somewhere deep inside that I couldn't really locate. I immediately stopped the Xenadrine but the damage was already done. Over the night the itch progressed to a burning and I began to have a little difficulty urinating. Nervous, I went to the emergency room, saw a doc, and gave him my story. He cryptically diagnosed me with "chemically-induced BPH", which I now know was a completely insane diagnosis, a prescription for Flomax, and a referral to a urologist. Oh, he also performed a DRE (Digital Rectal Exam) and said that, while my prostate was normal size, he "felt something strange" and that I should make sure to schedule an appointment with the urologist. Since I didn't know anything about prostate diseases, I went home with mounting fear that maybe I had prostate cancer. Thanks, doc.

Over the next few days my world was basically shattered into a thousand pieces. The pain ramped up to levels that I didn't think were possible for a person to experience and it never let up. Ordinary painkillers couldn't touch it - it was like throwing a few drops of water on a firestorm. I was experiencing an overwhelming need to both urinate and ejaculate at the same time that nearly drove me insane. However, when I tried to take a leak only a few drops would come out and I wasn't about to try an ejaculation. Then the actual prostate spasms began that felt like the Hand of Satan just reached inside me, grabbed something, and was trying to rip it out or someone was attempting to shove a red hot spear up my rear end. I was experiencing pain in all areas - suprapubic, perineal, and rectal. I couldn't sit, couldn't really walk, had difficulty eating, couldn't sleep and could barely lie down, and then only on my side with a pillow between my legs. Naturally, I couldn't work (thank God I had a boss who was also my friend).

This went on for about 5-7 weeks during which I learned a little more about what was going on. I had experienced bad pain before, but it seemed to fluctuate. This was an absolutely unrelenting pain that never abated, night or day. And the nights were the worst. After being in this state for several weeks, I think I went a bit insane. I eventually sank into a black depression and despair and was prescribed Zoloft which didn't do anything except cause erectile dysfunction which I though was being caused by the prostatitis. I was also experiencing retrograde ejaculations thanks to the Flomax, which I again thought was somehow related to the prostatitis. I eventually saw that urologist (it took several weeks to get in) and he basically told me, "You certainly don't have prostate cancer, but there's nothing that can be done. You have non-bacterial prostatitis. You'll have to just live with it. Here's some antibiotics you can try." Why he was giving me antibiotics for a non-bacterial condition crossed my mind, but I was in no mood to argue. At least he didn't try to BS me, I thought. So, after seeing no end in sight and obtaining absolutely no help from doctors, I was convinced that my career was destroyed, I would never have sex again, the pain would never end, I was an invalid at 29 and my life was over. As much as I didn't want to, I seriously began to contemplate ending it.

Fortunately for me, my brother was there. Had he not been there, I most likely would not be here, if you get my drift. He elaborated on his situation from about two years ago regarding Xenadrine, none of which I was aware of at the time. He did a good job of concealing his problem back then since his only real symptom was some cramping. But it was enough for him to run the circuit of multiple doctors trying everything - antibiotics, anti-fungals, low sugar / carb diet, prostate massage, no spicy food - without success. He even mentioned he thought about going to see Dr. Feliciano in the Philippines, quite the rage at the time. Luckily he didn't. He mentioned that after about two years, he was fine. It just seemed to very slowly abate over the course of two years to the point where he couldn't notice it anymore. My first ray of hope. If he took Xenadrine and acquired prostatitis but was OK two years out, maybe I will follow the same pattern.

Thus began my journey during which I learned more about the prostate and prostatitis than I ever wanted to know. Through this trial I've tried things that really helped (sitz baths, boiled broccoli broth, quercetin pills, donut cushions) and a lot that didn't. I've seen the shenanigans of the Prostatitis Foundation and various quacks and idiots (NSMG springs to mind) trying to take advantage of sufferers, and I've seen guys rise to fight them on the sci.med.prostate.prostatitis newsgroup. I've even engaged in some of the battles. And I've witnessed the final blow to their ignorance and deliberate misinformation with the creation of this excellent web site.

So what are things like for me today, almost 2 years from the initial onset?

Fabulous. Thought there are little things to remind me that I am not "cured" in the traditional sense of the word (i.e., I can never take Xenadrine again even though some can with no problems), I have no real difficulties - no pain, no sexual or urinary problems, etc. The only lasting effects are a psychological "scar", an unreasonable "what if" fear of a return to those days, quite understandable under the circumstances, and a case of "prostate consciousness" - I know exactly where "Mr. P" is located and how he's doing. Oh, and a bit of residual anger at the medical establishment and doctors (except for Drs. Dimitrakov and Shoskes, of course! :lol: ). If they couldn't have helped the prostatitis, they could have helped with the damned pain besides "Oh, just take some Tylenol" when asked for something stronger. Other than that, no real problems.

The whole point of this rather long post is this: there is HOPE. I know there are those who say they've had this condition for years and years with no respite. I believe them and my heart goes out to them, but that doesn't seem to be the typical progression. The key factor seems to be time, about 2-3 years, and that requires patience, especially when pain is involved. And you absolutely MUST educate yourself about your condition until medical science can shed more information on the disease and possibly a cure. But if you can pull through to the other side, you will have, in my opinion, conquered one of the worst trials a man can face. And then you can come back and write your own "success story". That is my sincere hope for all sufferers of prostatitis.
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alprost
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Post by alprost » Wed Nov 27, 2002 11:28 am

Thanks for posting this - it couln't have come at a better time for me personally. I saw my Uro today and he basically told me that my prognosis is pretty negative. It is heartning to see that some people do get better.
This is not Medical advice - Consult your Doctor!

Age:39. Age at onset:31. Symptoms prior to treatment: Golf ball in rectum, severe urinary frequency (2-3x/hr; 5-10x/night); weak stream; painful ejaculation; coccygeal pain; tip of penis pain; general pelvic pain on left; testicular pain; supra-pubic pain. Current | Symptoms: Urinary frequency 1x every 2-3 hrs and 1-2 x a night; mild pelvic pain on left hand side (all symptoms still improving!)
Helped by: Trigger point release; avoiding exercise; pelvic floor relaxation; Neurontin decreased bladder sensitivity somewhat. Worsened by: Exercise; frequent ejaculation; ibuprofen irritates bladder. Made no difference: Diet; biofeedback; quercetin; Steroid anti-inflammatories; Elavil.

****UPDATE*** I am now able to sit again at work all day, and can perform moderate aerobic exersise again for the first time in 8 years!!!

Please read:
viewtopic.php?f=37&t=808&p=3954
viewtopic.php?f=7&t=239&p=1158
viewtopic.php?f=37&t=248&p=1214

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J Dimitrakov
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Re: Never Give Up Hope

Post by J Dimitrakov » Wed Nov 27, 2002 1:28 pm

Thad Noles wrote: The whole point of this rather long post is this: there is HOPE. I know there are those who say they've had this condition for years and years with no respite. I believe them and my heart goes out to them, but that doesn't seem to be the typical progression. The key factor seems to be time, about 2-3 years, and that requires patience, especially when pain is involved. And you absolutely MUST educate yourself about your condition until medical science can shed more information on the disease and possibly a cure. But if you can pull through to the other side, you will have, in my opinion, conquered one of the worst trials a man can face. And then you can come back and write your own "success story". That is my sincere hope for all sufferers of prostatitis.
Thanks, Thad for posting your update. We are all happy that you are doing good.
This communication provides general information, and is not a substitute for face-to-face medical care. A doctor-patient relationship should not be assumed by the reader.
Jordan Dimitrakov, M.D., Ph.D.

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webslave
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Post by webslave » Wed Nov 27, 2002 4:03 pm

Thank you for the kind comments! Appreciation is always nice :smile:

Looking at your case, the latest theories would say that the thermogenic substance insulted your prostate in some way (maybe through the drying out effect of the megadose of caffeine, who knows), and this minor injury provoked a neural wind-up to which you are genetically prone. Eventually you took steps to interrupt the feedback loop, allowing the nerves to return to normal, the inflammation to subside and the mast cells to become unstimulated.

Perhaps interrupting this cascade and the associated feedback loop could be the key to ending flares.

bti20

Post by bti20 » Wed Nov 27, 2002 6:24 pm

Thank you so much for that post. It means a lot to here some positive experiences. I can utterly empathise with the 'terrrifying' first few months that you described, and yes, one year in my symptoms are a little bit better than they were. If I was told by a CPPS soothsayer that my symptoms would be gone on day x at some time in the future I would take it like a shot, no matter how far away. I guess you have to keep believing that that day exists.

Clark

Post by Clark » Wed Nov 27, 2002 11:13 pm

Great post :)

My story is somewhat like yours, similar symptoms and I respond to broccoli and quercetin. Luckily I too am getting better as time goes on, and although I am only 5 months down the line I would be very happy if I was 'in remission' after 2 years :smile:

Good luck and stay pain free :)

Thad Noles
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Post by Thad Noles » Fri Nov 29, 2002 1:52 am

webmaster wrote:Looking at your case, the latest theories would say that the thermogenic substance insulted your prostate in some way (maybe through the drying out effect of the megadose of caffeine, who knows), and this minor injury provoked a neural wind-up to which you are genetically prone. Eventually you took steps to interrupt the feedback loop, allowing the nerves to return to normal, the inflammation to subside and the mast cells to become unstimulated.

Perhaps interrupting this cascade and the associated feedback loop could be the key to ending flares.
I think you may be correct. I think this is actually the mechanism by which my (and my brother's) problem occurred, particularly regarding mast cell activation and secretion. I read something today which I believe could be the answer I've been looking for. I've always been trying to figure out exactly what happened - I knew it was related to the thermogenic but I never read anything explicitly tying one to the other until today.

I was reading Dr. Theoharides' paper on the website titled "Mast Cells in Allergic Inflammation and Arthritis". This doctor and his colleagues are experts on mast cells according to the website. In the paper, I noticed the following quote regarding mast cell triggers -

"There have been very few studies on the effect of food supplements on mast cells. A prime example of products that could activate mast cells is those containing Ma Huang extract that is rich in ephedra alkaloids."

:shock:

If you noticed in my previous post Ma Huang extract is one of the three main components of Xenadrine. I believe this was the primary culprit that contributed to my descent into hell. :twisted:
Of course, this is just a hypothesis and I'm not about to engage in a test by taking it again, but I think it makes sense given the evidence / situation. This could certainly bear looking into because if it holds true, there needs to be a warning on the stuff. I know not everyone is susceptible but for those who are the effects can be devastating.

So much for taking shortcuts. :roll:
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AR

Post by AR » Sat Nov 30, 2002 12:14 am

Thanks Thad I am pleased for you.(pepe jafa)

tractor316

Update

Post by tractor316 » Tue May 27, 2003 7:10 pm

Thank you for your update . I have had prostate pain for about 2 years. Antibiotics did nothing except give me a yeast infection that went untreated for about a year and a half . Luckily one of the many Drs. I went to noticed it and treated it . Yeast infections are as painfull as prostate problems and sometimes maybe part of the problem . I am almost pain free . Cut out all alcohol and caffeine . Lots of rich foods with sugars seems to upset my prostate. I try to watch my sitting . I,m going to try the stretching excercises and see if that helps . I'm not pain free but it sure is a lot better.

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