Success with Botox (and other strategies)

[webslave]

I received this today. I shall move it to the Success Stories forum once you have all had a chance to comment.

Dear Webmaster,

This is an email from bti20 (remember me?!)

I am just emailing you say ask you if you would post this success story (see below) on the cp.com forum for me. I know we had our disagreements, and I'm sorry if I irritated you, but I felt that getting my opinion across was the right thing to do at the time. Anyway, I have written a "success story" below, because I no longer have CPPS. I want to thank you for all your answers to my questions over the years on this forum. You are totally right: this forum does save lives, mine included. I was desperate to get better and I believe that everybody can. I hope you will be able to appreciate my comments in this success story about chronic prostatitis / chronic pelvic pain syndrome and OCD. I hope they are valid. I really didn't enjoy writing this success story like I once thought I would. I have buried my experience with chronic prostatitis / chronic pelvic pain syndrome very deep in my past and I am not entirely comfortable thinking and talking about it now, for fear (irrational of course) that it will come back. If people want to ask me questions about my post then I will view all of them over a period of a few weeks and then write an another message for you to post on the forum. I admire your ability to support these people constantly: I can't do that. I wanted to do my bit to inform people that recovery is possible. I applied all my knowledge and effort to this condition and came up with hundreds of theories. Not all of them agreed with yours, but I am a bit worried that you might not print this success story. The only justification I can think for not printing it is that it would be DAMAGING in some way. That is certainly your judgement call: I don't think it will be, but you have the best view on this.

Thanks again Webmaster for all your help in the past, and I salute you for what you do.

Best Wishes
Ben

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I have been meaning to write this message for a long time now. The truth is that since making a full recovery from chronic prostatitis / chronic pelvic pain syndrome (yes, you just read that correctly) I have had so much to catch up on, so much to do, so much else to think about, that writing my own success story was the last thing I felt like doing. Yet, when I was in the midst of this dreadful condition, I had vowed to myself that I was going to get better one day, and that when I did I was going to write my own success story. So I guess I'm writing this partly out of allegiance to my old, sick self, but mostly because I want to tell every person on this forum that recovery is possible; full recovery.

From the beginning, then. I was 23, studying for a Master Degree, happy, fit and healthy with a beautiful girlfriend that I was in love with, when I developed chronic prostatitis / chronic pelvic pain syndrome out of the blue. The circumstances were unbelievably bizarre - I can hardly bring myself to think about it now - but the resulting chronic prostatitis / chronic pelvic pain syndrome was nothing less than brutal. I had been advised by a GUM clinician to use a needle to pick at some tiny little viral warts on my foreskin. So, I foolishly did this, and inevitably caused some discomfort which made me stop immediately. However, what happened next was nothing short of astonishing. As the hours went by, I started to develop a pain in the left suprapubic area. As this pain grew and grew other pains started cropping up all over my groin, until - and I don't know how else to describe this - all hell had broken loose down there. I have never known pain like it, all hopefully never will again. By that first evening I was in casualty in hospital (with my slightly bemused girlfriend) coiled up in agony on a chair, waiting to see an emergency doctor who - to my complete and utter disbelief - shrugged her shoulders and gave me some ibruprofen. It might as well have just drunk water for all the good it did.

Over the next few weeks, to my astonishment, the pain went on - unrelenting. From the first thing in the morning, to the last thing at night, it was there: intense, nauseating, dominating, excruciating pain in my whole groin and virtually up to my stomach. After about eight doctors visits I was stunned to encounter experienced practitioners engage in the art of professional shrugging, time after time. I finally came across a website about CPPS. My relief to have realised what was happening to me was obviously tempered by the fact that chronic prostatitis / chronic pelvic pain syndrome seemed to refuse to go away in most people. Still, I was so glad to know that there was an "explanation" for what was happening to me, and that I wasn't alone; and in any case: I was absolutely convinced that in this day and age the awful pain I was experiencing would be dealt with by the health services once they knew what it was.

Well, I was wrong. Like all "newbies" I soon hit the antibiotics trail. My life was absolutely in tatters - my girlfriend and I were both in tears almost every day and the strain was beginning to show - and I was taking an antibiotic a day in response. For two and a half months I took Cipro, until the notorious side-effects hit. I can honestly say that when they did, it was the worst week of my life - even worst than that terrifying first week. The drugs had caused some sort of central nervous system reaction, and my arms had begun to throb with pain as well as my prostate. It was the most surreal feeling: like my bones were on fire. That's the only way I can describe it. I was convinced that chronic prostatitis / chronic pelvic pain syndrome was spreading (which, for the record, it never does). The Cipro had also turned me into a total insomniac - I hadn't slept for a week. And I had this feeling of steadily growing panic that never seemed to peak. Like one of those pitches you get in psychology experiments that seem to rise and rise forever. I had returned home from my studies to my parents' house, leaving my girlfriend and my friends back at university.

Luckily my mum is a pharmacist and she decided to investigate the side-effects of Cipro. Three days after stopping the drug, the insomnia and the added arm pain of the side effects disappeared. I was relieved to say the least, but also faced with the bleak realisation: after nearly three failed months on one of the strongest antibiotics around, I had realised that drugs were probably not going to save me. And, as you all probably realise by now: there were no other candidates being offered by the health services. I realised that I was totally on my own.

From this point on, the story gets a bit blurry for me. The only constant was the pain, but apart from that I tried just about everything. I managed to get back to university and complete my masters degree - basically by rehashing stuff I had written in my first degree. I was in no fit state to work. However, soon after that, my girlfriend left me. There was no chance of me continuing with the studies because sitting was far too painful, not to mention the impossibility of concentrating with a never-ending blast of pain running through my mind. I really didn't know what else to do, so basically I started getting drunk every day to numb the symptoms.

By now, I was about a year and a half in to chronic prostatitis / chronic pelvic pain syndrome and I was on the dole and feeling pretty much defeated. As it happened, I met a girl who suffered from bad IBS, and fell in love with her. We supported each other, and I was lucky to have her, to say the least. I vowed to myself I would marry her once I got better and got back to university to do a PhD. In the meantime, I was trying everything: you name the herbal remedy, and I tried it. I was also circumcised in a futile attempt to trick my brain into thinking there was no pain any more. It didn't work. By about two years in, though, I had undoubtedly got a bit better. I could now go for jogs and play football without being in severe pain for days afterwards. And I had my sex life back. Sure, the prostate was cramping and throbbing all day long, and some days it was in really sharp pain and totally unpleasant; but on the whole I was becoming more normal. However, my total recovery didn't come in time, because in the end my second girlfriend left me because she said my illness was screwing up her life too. At the time, I was utterly devastated. But thinking back now, I think her leaving me was a crucial step in my recovery.

I decided to defiantly return to my studies - to start a PhD - even though chronic prostatitis / chronic pelvic pain syndrome was still there. But I was so upset at losing this second girl before I got a chance to get better and propose to her, I found myself thinking about chronic prostatitis / chronic pelvic pain syndrome less and less. I was thinking about it enough, however, to decide to try - almost as a last ditch - a Botox injection in my bulbocavernosal muscle. But a day after the injection I realised it had only made things worse. Instead of a nagging pain in my groin, I developed an intense and even more annoying need to urinate. I soon began to look forward to the two months time when the Botox wore off. But as the Botox wore off something incredible was happening. The need to urinate was disappearing, but the pain wasn't coming back. About three months after the injection, a thought occurred to me one day. I thought: "I haven't needed to urinate all day, and I haven't felt pain all day. I haven't even thought about my prostate all day. Maybe it has gone?". After three years of incessant pain, however, it takes a person a while to truly believe they are cured. But as the weeks wore on, and I experienced hardly any pain or need to urinate, I began to believe it: chronic prostatitis / chronic pelvic pain syndrome had gone. Soon I started telling people I was better, until at some unspecifiable moment, the truth was confirmed in my mind: I was cured, totally cured: I was normal again.

If you want my honest opinion how it happened, the truth is I don't know. Maybe it was the Botox. Probably it was the Botox. It must have been the Botox. But there is this nagging voice in my head telling me that the medical intervention wasn't enough. I needed to simultaneously believe that I was better. An element of OCD had probably crept into my daily behaviour (understandably - three years of pain would make anyone go a little bit insane) so that in order to get better I had to truly believe that it was happening.

So here is my moral. You are going to need to discover a cure for this condition, and it will almost inevitably be totally idiosyncratic to your own particular case. My case was unique and bizarre in the extreme and I had to research into every last detail of it: even the exact muscle to insert the Botox into was my own idea, based on the complex neurology of the penis and my last remaining symptoms (the most annoying of which was a left-sided pinching sensation running down the side of my penis). But, you need to ask yourself very single day (every day!!): could I be better? Am I ready to be better? chronic prostatitis / chronic pelvic pain syndrome is NOT in the mind. I am not saying that: but the tense disposition which causes people to focus on their pelvic muscles and exacerbate the problem is in the mind. Every once in a blue moon, when I am incredibly stressed I get that tense feeling back in my muscles and if I didn't know better I might think chronic prostatitis / chronic pelvic pain syndrome was coming back. But now I do know better: it has gone, and so I ignore the tension and it goes away. I don't need to do relaxation tapes or anything like that. In a way I think these tapes actually might make things worse for some people, by encouraging introspection. You need to IGNORE chronic prostatitis / chronic pelvic pain syndrome - not lie on a bed neglecting what you would otherwise have been doing because you've got it. You need to act like it isn't happening on a daily basis. You need to try to trick yourself into thinking it has gone. Because I believe there are medical windows of opportunity with this self-perpetuating condition and you need to be ready to be better when these opportunities arise. Don't spend all day thinking about CPPS, don't "fiddle" with your testicles or penis to see if it the pain has gone or not. Don't have an "exploratory" masturbation to see whether it will hurt or not afterwards. Believe me: it will, and it would hurt for a normal person too if they messed around that much with their delicate organs. In my case chronic prostatitis / chronic pelvic pain syndrome started with an appalling, devastating cycle of brutal pain and dysfunction. There is no question that I was suffering - just like you all are - from a genuinely awful medical condition. But in the end, I think I needed a bit of faith that recovery was possible and that just maybe I was on the way there. I got there in the end; slightly dazed, confused and none the wiser: just three years older, and relieved to have my life back.

So my point is this: no-one knows what chronic prostatitis / chronic pelvic pain syndrome is. But the fact is: it might be the case that it starts out as a genuine medical condition but then it blends after a few years into a sort of obsessive compulsive disorder. chronic prostatitis / chronic pelvic pain syndrome might end up as OCD, even though it obviously starts out in most cases as a brutally painful inflammatory/neurological condition. If you want to recover from this inexplicable condition then, in the same way that you experiment with all sorts of herbal remedies etc., you owe it to yourself to 'experiment' with a psychological remedy of sorts. In other words: just in case chronic prostatitis / chronic pelvic pain syndrome ends up in its natural progression as a form of OCD, even though it doesn't start that way, you should act to counter the symptoms of OCD. To do that you must stop thinking, probing, worrying, focusing your attention on your pelvic area. You have to stop all the regretful thinking. And stop thinking that women give a damn that you have this condition. THEY DON'T. They will admire you more for your honesty and stoicism, if anything - as long as you don't let the condition take over and alienate them. Of course all this 'positive thinking' applies only to people for whom chronic prostatitis / chronic pelvic pain syndrome has stabilised and diminished from its early massive onset; I mean it applies to prostatitis in its chronic state. But unless you try to live a normal life and try to overcome this condition psychologically you will be depriving yourself of the chance to recover from a sort of obsession if it turns out that OCD is involved in CPPS. I emphasise: my cure might have been effected by the Botox alone - it might have been an entirely physical cure. But it also might have been a sort of psychological white flag-waving. As if my mind might have said: I just can't handle this self-scrutiny any longer, this searching for impossible answers - and so I simply unconsciously abandoned all the negative behavioural patterns of CPPS. Either way - physical or mental - it is best to cover all the bases with CPPS: you must counteract a possible obsessive element, even if it might turn out that chronic prostatitis / chronic pelvic pain syndrome has nothing to do with OCD.

So, anyway, I hope that this message can give people enough faith to believe that recovery is possible. Don't let any doctor EVER EVER tell you this is an incurable condition. I would say that almost everyone gets better from it, and that you will recover too. I simply cannot find the words to convey how awful my case of chronic prostatitis / chronic pelvic pain syndrome was, but I got better in the end, and now it feels like a distant nightmare. So hang on in there. Get through the awful first few months or years, and then: tell yourself every day that you are on the road to recovery. Explore medical solutions, but don't put pressure on your recovery. Don't test yourself: don't test the pain every ten minutes to see if it is still there. Just keep believing that there is a day in the future when you will be cured, and that every single minute you get a bit closer to that day. That is the truth, and you will have your life back in the end, I promise.

[robertpagen]

To do that you must stop thinking, probing, worrying, focusing your attention on your pelvic area. You have to stop all the regretful thinking. And stop thinking that women give a damn that you have this condition. THEY DON'T. They will admire you more for your honesty and stoicism, if anything - as long as you don't let the condition take over and alienate them.

I found this post to be very frank, and that is good. I regularly see men on this site explicitly or implicitly criticizing the woman they are with or no longer with as not caring enough about their condition. The above makes the point that women need whole, strong men in this society.

Unfortunately this condition seems to produce severely disabled and confused men (sometimes temporarily but apparently some for open ended extended periods) who take out their complaints on the only people who will listen to them.

Now I have been there and I know what it is like to lose a good woman to this and then blame it on the condition. But lets be honest, women stay with men who have had some bad stuff happen to them. As long as the men stay mostly level thinking and optimistic I am amazed what a good woman will go through. I lost mine because I let the condition hijack my mind and common sense and I lately in my readings get the feeling that this is still happening here in 2006, in spite of all the info now available to you. I agree with the writer that at some point the physical morphs into the mental.

I agree with the writer that this site saves lives, but I wonder if we have any way of knowing if we have lost any of our posters over the years to suicide, as several have spoken about it.

What I am saying is that at some point a man needs to take the cards he has been dealt and play them the best he can. I am sometimes puzzled when I read a post by a man who has been symptomatic for a year or two and he seems at the edge of sanity. Yet there are men who lived with worse for ten times that and they are living a life.

Be well,
Robert

[CppsDad]

What I am saying is that at some point a man needs to take the cards he has been dealt and play them the best he can.

This is very true. I try to apply this to my condition too. Everyone has stuff they have to deal with. chronic prostatitis / chronic pelvic pain syndrome is just ours. And in some strange way, I think beating chronic prostatitis / chronic pelvic pain syndrome will actually make me a better person for having had it.

Mike

[fjt]

Easier said than done

I've not been able to get down the stairs for the last 2 weeks (this happens often). Makes living a life slightly difficult. Simple things like going out to get groceries becomes a real big deal.

Perhaps when I am 50% - 100% better I will agree with you. Perhaps not. Who knows?

It is very common for sufferers to have a real hard time coping with this condition.

I'm not saying you should sit around going out of your mind. All I'm saying is that chronic crippling pain is likely to drive most people a bit insane until you learn how to deal with it and figure out some kind of way forward.

We're only human after all

[Richie]

http://ucpps.men/1/docs/j ... 2.2004.pdf


See page 47 on Botox.