About webslave

All about UCPPS, prostatitis, IC/BPS
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About webslave

Post by webslave »

My Story
You can contact me directly by emailing support at ucpps dot men


My name is Mark, I’m the webmaster here, and I call myself “webslave” on the internet. I started this site in the late 1990s because there was an abysmal lack of information for men with chronic prostatitis/CPPS on the web. The only site was prostatitis.org, which was (until 2021 when it thankfully closed down) a confused mish-mash of cockeyed theories and misinformation, specifically that CPPS is an infection of the prostate (disproved again and again by modern research).

My own case of CPPS started in 1991. I was an IT consultant, a systems analyst, controlling a team of programmers in a large institution. The pressure was intense. I worked most weekends. I used to find myself sweating with stress on occasion, and I had to get up and pace around the office every half hour to control the tension. I was involved in building key systems for the corporation and if I made the slightest error, millions of dollars could be lost. My life was ruled by unrealistic deadlines. At the same time I had a minor infection, probably chlamydial, successfully treated with antibiotics. I had the most senior people in the corporation calling me several times a day for updates and the conversations were often tense. Long story short, I developed a bad case of CPPS that made walking difficult, such was the extent of the pain, and I found it harder and harder to do my work, even though my employers allowed me to work from bed at home. When I finally resigned they replaced me with four people, which made me realise I’d been pushing myself much, much too hard.

After several years of rest and a diagnosis of CPPS + CFS, I was still unable to return to full-time work without symptoms returning. I had resigned from work in my thirties. It was a bitter blow but I came to accept it. Fortunately I had other interests and hobbies, and other ways of making money.

Today I am retired, happy and healthy and totally cured of CP/CPPS (and have been since around 1999-2001). How did I get better? Well, after the usual run-around with doctors and urologists, begging for my prostate to be removed (!), I finally stumbled on my own form of treatment using a tool to massage my prostate and adjacent tense muscles. I’d already implemented a relaxed, stress-free lifestyle (thanks to my wife acting as breadwinner), and a few years later, using an improvised device, I was able to hit trigger points (much safer devices are available these days). The strategies I followed to get better are mirrored today in the Wise-Anderson Protocol. I was then 60-70% better! Then along came Quercetin, and that moved me to 80% better! It was like a miracle (thank you Dr Dan Shoskes for the discovery!). The final step was excluding gluten from my diet (a strategy that does not work for everyone), and that brought me to 100% better today. Those were the major turning points. There were a few other minor tricks and stratagems I used, but they’re discussed on the forum, along with many other life hacks men use to overcome this illness.

After receiving several emails from men telling me that this website is a “treasure trove” that had literally saved their lives, I decided to keep it open. But for me to put the effort required into it, a little sponsorship was needed. That sponsorship has dried up now (2021) and I shall probably have to close it before too long (if you are a wealthy person who has been helped by this site, send me a large donation and help other men by keeping this site around :clap: PayPal link at bottom of the page.)

My personal philosophy is:

"To move the boat, you must lift all the anchors"

You do this by attacking the condition from multiple angles, and by finding and removing all of the triggers and causative factors.

Achievements: wins, bright ideas and discoveries

Over the years I’ve had a few Wins, some Discoveries and a few Bright Ideas. On the Wins side:
  • I disrupted the rackets run by “doctors” in the Ukraine, Philippines, China and the US that were conning and defrauding CPPS patients and damaging their health. For that I received several death threats. By publicizing and exposing their scams, I stopped the flow of victims to their “clinics”. Details of these crooks and their schemes are available in our forum.
  • I exposed the official USA-based patient advocacy group, The Prostatitis Foundation, for the wrong-headed fools that they were, pursuing the wrong ideas, giving money to charlatans, and in bed with some of the crooks mentioned above. They ended up closing in 2021 with a very poor record (no achievements at all, and several scandals, including one involving allowing a criminal gang to take over their forum and recruit patients to a Chinese clinic where many were infected with Hepatitis C). Again, details elsewhere in the forum.
My big 'bright idea' was to put two and two together about the effect of antibiotics. When I came onto the prostatitis scene in the mid 1990s, nobody anywhere had concluded that antibiotics were actually having an effect because antibiotics are anti-inflammatories. But I thought long and hard about it, did some research, wrote an essay, and made the argument, for the first time ever. Within five years the anti-inflammatory effect of the antibiotics that are routinely prescribed to prostatitis patients was accepted wisdom, mentioned in published papers, conferences and medical texts. Not bad for a layman with no research budget!

My Discoveries were the following:
  1. Ejaculation is the classic pain trigger for men with CP/CPPS, and post-ejaculatory pain is the hallmark of the condition. I discovered that if a man deliberately relaxes the muscles of the pelvic floor during orgasm, the pain aftermath is much diminished. This was also a clue that the condition is partly neuromuscular in origin. Many men have confirmed that this ejaculation-relaxation technique has helped them avoid some of the pain of this condition. But doctors are still ignorant of the technique.
  2. I discovered that gluten can trigger pelvic pain in a subset of men. It is a nerve poison for a subset of men. Ever since I recovered around the year 2000, the only return of pain I have had was linked to gluten consumption. I now avoid it completely and have no symptoms at all. This is still not acknowledged by urologists or mentioned in medical research or textbooks.
  3. In 2020, I discovered that Coenzyme Q10 (CoQ10) can resolve or greatly lessen trigger points, especially in older men (older people produce a diminished internal supply of CoQ10). I suffered from intractable and disabling trigger points in my shoulders that mostly resolved when I started a course of CoQ10. Again, this information only appears on this website and nowhere else on the internet, as of 2020.
  4. Also in 2020, and building on (3) above, I postulated a connection between CPPS and genetic errors in the basic energy mechanisms of cells, based on my own growing exercise intolerance as I age. I call on researchers to investigate the possible connection between genetic mitochondrial disorders, such as mitochondrial myopathy, in mild form, and CPPS. Some people have small, inherited defects in the chemistry of their mitochondria, in the complex ATP environment, and since ATP is the energy currency of cells, this could make individuals with such defects vulnerable to pelvic pain. Whereas a normal person, under stress, can tolerate tensing his pelvic muscles for many hours a day, someone with an ATP-related abnormality would accumulate lactic acid and develop myopathy. If correct, my theory would also explain the mysterious comorbidity links between CPPS and Chronic Fatigue Syndrome, and CPPS and Fibromyalgia. CPPS patients may trial of a course of Coenzyme Q10, available without prescription, for a few months, to test the effect.
The future

I keep the site going now because I have an interest in medicine (I attended Medical School in the 1970s), and I have a real dislike of scammers who take advantage of CPPS patients. And they keep popping up like gophers or moles in a lawn, so I have to keep playing whack-a-mole.

But recently I was saddened to see that many men are now turning to social media (Facebook) and Reddit to discuss this problem, and after visiting those venues I was appalled to find all the old thieves, scammers and crooks are back at work again, their lying representatives working the groups and forums to lure men to distant clinics, and most of the men are obsessively talking about microbes, just like back in the 1990s ... it's as if this site never existed. In some ways I feel I have failed.

My only patient-run competition on the internet is a website aimed mostly at women, not men. It’s quite unlike this site. Very commercial, wannabe-corporate atmosphere, full of slogans and ways to spend money, no clear advice, and even (in my opinion unethical) invitations to pay for unnecessary and misleading urine tests. So I think ucpps.men is unarguably the best site on Earth for men with UCPPS / chronic pelvic pain syndrome.😃

I want to thank all the people who have helped me maintain this website and the forum over the years: Mike Kavanagh, Chris, Kevin, Richard, Matt, Danny, David, Fred, Alan and Mike. There are others and if I have not mentioned you, it’s not because I’ve forgotten you -- thanks one and all.
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