So it begins...

[Sleeper Service]

Well, how to start...

I tried to go back to work on Thursday but didn't last more than three hours before breaking down. Had to go to the toilet every ten minutes and the constant nipping in my penis just made it impossible to concentrate. End result was floods of tears - my boss was good about it - and sitting in my parents' house feeling the most depressed I've ever felt.

Bottom line is I think that my job is out the window although I have five months more sick pay until it reaches crunch point. To be honest, I can't help but think it's been contributing to things for a long time now. I manage people and it can be stressful.

Was a bit better yesterday but had a crying jag again today. In a way this was good because I sat with my wife and we talked through what we could do. Financially we can manage - we have enough to pay off the house and more plus she gets a reasonable wage and with any dole money I would get we would be OK. That's one less worry.

We talked about what would happen if I had this for ever - the main symptom is a constant pain/urge in the tip of my penis but I also have groin pain and discomfort on the right side of my abdomen and just above the pubic bone in particular - and we agreed that it's better to start working towards managing this than lying around feeling depressed.

So: Today I ordered AHIP (I got a deal on Amazon with another book on Trigger Point Therapy) and started thinking about how I can manage my life better. Yes, I dare say I'll break down again, yes I will get the blues but, yes I'll soldier on and I'll try to beat or at least moderate this illness.

All I can say is thank God this site exists because I felt so alone and I can see I'm not. That's a blessing in itself.

It's very easy to look inside and focus on despair because things have changed but we can't do that, can we? We need to move onwards and upwards and hopefully, with your help, I can do this.

Let's see what's out there, eh?

[scotsman]

Reading a A HEADACHE IN THE PELVIS gave me the biggest boost and I've found that actively and aggressivly trying to beat this condition gives me the strength to fight on through it. Every month I try something different and I see little steps forward - so it's important you keep a weekly/monthly log of where you see your condition being. Write down all the symtpoms and mark them out of ten. Improvements tend to happen pretty slowly so it's important to keep a note of where you are so you can measure the improvement over time.

My urinary symptoms were resolved mainly by external triggerpoint work so I'd recommend that once A HEADACHE IN THE PELVIS arrives you read it cover to cover (I did it in one sitting the moment it came through the door!) and then consider doing some external triggerpoint work yourself and think about seeing a physiotherepist.

Plus read these forums as much as you can, post as often as you can - this place gave me a real lifeline.

Richard.

[Sleeper Service]

Thanks Richard. My name is Mark for future reference.

I read your history and it did give me some hope the urination urge can be beat. I have good days and bad days and today has been a b*tch. Ironically, the pain is bad just now but I actually feel better mentally having had the chat with my wife and having ordered the book. Of course, I'm not naive enough to believe in instant wins and miracle cures but I'm willing to try something that has worked for others.

The worst thing about this condition is its variability - some days I feel almost normal and other days it's an intense pain. It can vary throughout the day as well. I've tried to link it to triggers in terms of diet but there seems no reason to it so far. Can diet run two days behind maybe?

As I mentioned, I've yet to see a Uro although we may go private if we can't get the NHS one quicker - I'm back to the docs on Monday to get signed off and will push a bit harder then.

My prostate is larger than it should be but I hear that this can be a symptom of chronic prostatitis / chronic pelvic pain syndrome rather than a cause - I imagine if one's tensing the wrong muscles and squeezing the life out of the poor thing it would get p*ssed of pretty quickly!

Just have to take it one day at a time I suppose. I will take your advice and keep a pain and symptoms diary though to track progress as this sounds like a cracking idea.

[chewymix]

and be grateful if you can that, perhaps, the PT who knows most about this condition in the UK is in your town. If your biggest issue is frequency as opposed to pain then from my point of view abdominal massage has helped greatly. I am fortunate that the only frequency episodes I have had I have been able to rid myself of them with abdominal Theracane work.

Go see Bill and don't start catastrophic thinking about having this for the rest of your life. Hang in there!!

[CppsDad]

Sleeper,

First off, glad you found this site, glad you ordered the book, glad you talked to your wife, and glad you are ready to start taking charge. This condition beats you up, but the best thing you can do at this point is to start fighting back rather than waiting for the next pain cycle to hit you. You'll struggle with it for a little while, attempting therapies that don't seem to be working, but you have to trust that they are. At some point, you'll find some progress, small or otherwise, and that will have to be what you use to keep going. You aren't alone, and you have tools to help you. If you haven't tried AHIP, you haven't tried the single best set of tools out there from what I've seen and read. So stay positive, because help is on the way.

And remember - there is NOTHING you can't do in AHIP if you have a willing partner. She might be the most important person you have right now, because she can help you (and she WANTS to help you I am sure). Let her learn how to do therapy, and you can have free sessions for the next 5 years. It is worth it to pay the best to teach her - it only takes a few sessions, and she'll become competent enough.

Read my success story, it has a lot of pointers that I'd want to tell you, but there's no reason typing it again:

viewtopic.php?t=3281

Good luck! And stay active here while you are recovering. There's a lot of knowledge and support on this site!

Mike

[LightningTree]

Hi there,

I'm glad you found this wonderful site.

This is tough thing to go through, and I had plenty of crying spells myself. Having a twin brother who also had this helped me a great deal, but so did sharing with the people on this site.

I'm glad you have figured out that your future is stable financially and emotionally. This will help you relax. I realize this is not what you envisioned for yourself, and you probably had never thought pain of this form with no clear solution even existed.

But know this: It can be relieved and you can go on with your life without pain.

Its just going to take a while. Its going to take you learning new ways to treat your body, new ways to interact with the world, etc. But it is worth it.

Know that you can beat this by doing things in the Stanford method. I also recommend, personally, avoidance of sitting on your buttocks for at least a year.

Yes, that's right, I avoided sitting for two years and have done the Stanford/Wise-Anderson Protocol this whole time.

I have not had any pain in 2 months, and only rarely get slight niggling feelings that do not impede my life.

For my twin brother and I, combining the Stanford/Wise-Anderson Protocol with avoidance of sitting has resulted in complete remission of pain.

But progress is slow and symptoms come and go in waves, so it can be very discouraging for a long while. Talking on this site can help with that.

Keep talking to folks here, get down to learning a new way of interacting with your body through the Stanford/Wise-Anderson Protocol.

A little over two years ago I was lying on the floor of an apartment, crying, my muscles twitching every which way, terrible pain in the penis, groin, etc.

Just this week, I attended business meetings and even sat, with little discomfort, for 3 days straight, one day of which was 10 hours long at a conference table.

You can do this.

Hope to see you write some more.

[Sleeper Service]

Thanks all. A HEADACHE IN THE PELVIS has arrived so I will read it tomorrow and Monday.

My doctor has managed to get the Uro to push my appointment forward to June 1st so this is positive too. In addition, although the constancy is there, I've been taking Cardura, Quercetin, Zinc, Saw Palmetto and Mulit-vits and they appear to be helping with the pain - particularly the Quercetin.

I am looking forward to working on this and undertand that time, discipline and change will hopefully bear fruit.