New to the forum, but have been dealing with CPPS for years

[Danosu92]

To start I want to thank everyone for reading this and/or participating in the forum. It is very helpful to read others stories and to gain support from here. I wanted to share my story and to explain what I am trying to improve my condition; any feedback would be greatly appreciated. My story is a little different from what I have read on here and I have not shared this with many people but here goes, I apologize if it’s a little long.


My story starts when I was in college, 22 years old, which was 9 years ago. I was first diagnosed with genital herpes at this age, and that is around when my pelvic pain started. At the time this news crushed me, being young and not really knowing all the facts on that disease I went into a deep depression, started drinking more and was really distant with my friends. This is when I started feeling pain in my penis and abdomen regularly. The pain never really seemed to go away, and with the new diagnosis I assumed my pain was caused by the Herpes. A year or two went by with constant pain, finally I got fed up, and everything I read was about episodes not constant pain. So I started with a infectious disease dr. who said I had 0 signs of herpes at the time I still had immense pain. So she concluded that my pain is coming from something else. Then to a dermatologist that agreed with this sentiment, and he thought I had some skin issue. 10 creams later still no relief. So then to the Urologist, who concluded I had prostatitis. So onto antibiotics, months and months of antibiotics. All the while I am not having any outbreaks but still constant pain, at the same time I am having issues with hemorrhoids and the usual symptoms which is pain in urethra, mostly after defecating and ejaculating. The pain can last a few hours to days and can be extremely painful. After the antibiotics don’t work the urologist tried me on some alpha blockers. This also did not work, now this was only a couple years ago and deep down I was still associating my pain with the Herpes that I rarely to almost never have outbreaks off.

It was only about 2 years ago that I started to truly believe that my pain was due to chronic pelvic pain. It really took me a while to de-associate the pain, and reading a headache in the pelvis really helped me in doing this. The symptoms described there and since I moved I had another Urologist suggest that was really going on. But while the Urologist suggested this they really didn’t do anything to help me. Just tell me to do some research and basically good luck. This really left me lost after years of constant pain.

About a year and a half ago I started meditating, and close to that I started doing some pelvic stretches on a regular basis. Now I found a physical therapist that I am going to start seeing, ordered the Theracane and I am going to try any accredited quercetin product all while continuing stretching and meditating. The whole time I have continued to lift weights which I am debating cutting way back on heavy weights, eating healthier and cutting back on my alcohol. This is pretty much my back story and what I am trying , being single when this whole thing started it has really hindered me from developing any real relationships and one day I hope to be able to share my success on this forum. Thanks for reading.
Dan

[webslave]

Hi Dan. You seem to be off to a good start with the strategies you've chosen.

[jcacciat]

Dan, welcome. I've been on the forum for less than a year and have obtained significant relief from doing the kinds of the things you are doing. I have no doubt that all of the anxiety and stress brought upon by your discovery of the STD is what triggered your condition. Then the onset of chronic prostatitis / chronic pelvic pain syndrome symptoms shortly after that discovery left you understandably confused for years. I would be willing to bet this is more common than anyone realizes. Good luck and godspeed.

[bobby]

Welcome Dan, like everyone has said, your off to a good start. Just stick to the protocol and in time I'm sure you will find relief.

[Danosu92]

Thanks everyone, jcacciat that was exactly what I was thinking, I have read that a traumatic event can start this cycle, and at that time it was quite traumatic for me. Something I did not include before that also links into this is I had a couple year bout with depression, anxiety and panic attacks between the ages of 15-18. My mother died when I was 14 and for a year or two after I was physically fine, then all of sudden I would have panic attacks where I could not breathe and thought I could not swallow, etc. etc. I went on anti-depressants and counseling for a little over two years until I was finally able to beat it. I get the same symptoms very sporadically but the history is still there. And actually it runs in the family my brother is going through it now, but luckily for him I know what he is going to and he has somewhere to turn. But like I stated before the history of anxiety and the discovery of the STD were all things that lead into the condition. I am just happy to actually know what is going on so I can finally focus on getting better. I will let everyone know my progress throughout time but again, thanks for the support. Dan

[Danosu92]

First I will go over what I am doing and where I am at. Really brief I have had pain after ejaculation, going to the bathroom and occasionally sitting for the last 10 years. And the occasional frequency urinating, my biggest complaint is after ejaculation, I have pain in the genital region, especially the urethra, and the pain is very intense and can shoot down my legs. It can last for a couple of hours to a couple of days. So after reading a headache in the pelvis I started doing to stretches this past July. Towards the end of July I started seeing a physical therapist that was doing internal trigger points with me. Next week is my last week seeing her and then she thinks I can do everything she does on my own. My daily routine is meditation a half hour to an hour, about an hour of stretching and internal/external trigger point work. I also noticed that when I walk I tend to suck in my abdominal, so I am focusing on some breathing techniques trying to relax my stomach as to not pull up my pelvic floor. Other than that I am taking probiotics to help regulate my stomach.

Since I started I have less pain if any pain after going to the bathroom so that is a plus.

I have been doing some quick trigger point work right after. My ejaculation pain is still the same; I have had about 2 times without pain which is very rare for me. I am trying to be as patient as possible with my progress and not set deadlines to feel better, but as anyone who has this knows when you have a bad day its extremely tough. One other thing, I have read about using a tennis ball to roll on, I have used a Theracane instead to do really work deeply in my buttocks, perineal area.

1. I was just wondering what people’s thoughts on how I am doing and if I am missing anything that I could use to help?
2. I have also read about taking saw palmetto, has anyone had any luck with that or any other supplement?
3. I was also wondering if anyone has used any type of massager for external work?

Some other quick notes I have tried to cut back ejaculation to about 2 times a week, pretty much cut back all of my weight lifting to once a week and only about 3 exercises with very light weights so now I mostly do cardio, and cut back my alcohol consumption to about 2 days a week and less when I do drink.

Thanks for reading, Dan

[webslave]

Have you tried the technique of relaxing the pelvis during ejaculation? viewtopic.php?t=627

Saw Palmetto is not useful. It's used for BPH, not CP/CPPS.

When you say "massager", do you mean an automated device? (If so, I haven't seen anyone report using one internally.)

[sufferinginpain]

I know this post is long, but I think I hit some good points, I'd love to get everyone's feedback

I also noticed that when I walk I tend to suck in my abdominal, so I am focusing on some breathing techniques trying to relax my stomach as to not pull up my pelvic floor. Other than that I am taking probiotics to help regulate my stomach.

This is exactly my problem I think! I am very ashamed at the weight I've gained, and I constantly feel the need to hide my stomach. I was always a hard worker at the gym, and constantly was dieting (healthy) and felt really good about myself.

Suddenly, I had an upset. I thought I had an STD - EXACTLY what you went through. I thought I had genital herpes / HIV, you ask me why? Do not know.. Honestly.. I was with a girl and after being with her gave me pain in my testicles, after that continuing to pain in my rectum now. Undoubtedly this is our problem. We really took into ourselves that we have something that (even if we do have) is the end of the world. It is not the end of the world. And honestly.. Herpes? Come on... it's bad, but things can be worse. I went through a stage where I was constantly checking my privates for sores and bumps, its been 1 year now and I haven't had a single sore, I STILL went to the doctor to ask him, and he said "Why are you here? What other tests do you want? I think you're fine, stop worrying so much, the muscles in your rectum are starting to tighten because you are anxious." I then repeated, are you sure I don't have an STD? he replied - "Yes, there is nothing there, what do you want check for HIV?"

Once he said that, I started to think I have HIV. I went on COUNTLESS websites thinking I had HIV - why? God knows.. really.. the mind plays crazy games with us. The funny part is I was never even at risk to get HIV. long story short, I refused (and still do actually..) to get a test, because I know that if I found out it would ruin my life. I know that this is stupid, but I am really trying hard to get to a center and just get it over with.

Anyway, I've put my head to rest on all that crap - try to do the same. ok?

Dan, welcome. I've been on the forum for less than a year and have obtained significant relief from doing the kinds of the things you are doing. I have no doubt that all of the anxiety and stress brought upon by your discovery of the STD is what triggered your condition. Then the onset of chronic prostatitis / chronic pelvic pain syndrome symptoms shortly after that discovery left you understandably confused for years. I would be willing to bet this is more common than anyone realizes. Good luck and godspeed.

See what I mean? I completely agree with you Dan! We google too much, and we look for problems or think we have problems that don't exist and end up giving ourselves horrible anxiety and depression. The googling MUST stop. I caught myself googling today and automatically just because I have pain after a bowel movement I thought I have IBS. I had some chest pain on my left side (heart side) and I automatically thought I was having a heart attack, I starting googling.. going to justanswer.com and paying doctors to comfort me SEVERAL TIMES A DAY EVEN!

I have to admit that we as humans, and the savvy generation of googlers need to know that google isn't true. There are so many factors that go into a disease or a condition, yet alone a simple infection. We are not doctors and we must never diagnose ourselves, because out Type A personality kicks in and makes us anxious.

I firmly believe that the methods of relaxation are not just for your body, but for your mind. We all have a typical type A personality where everything needs to be perfect. I know this, I look at my actions and I see how bad it really is. I guess we really need to work on ourselves to be like the others, and "not give a crap" about everything, I noticed this as a little kid. Being overly cautious and anxious about things will just turn us into chronic prostatitis / chronic pelvic pain syndrome patients forever.

With that being said, CPPS, for me, is not a disease, and its not a condition - therefore there is no "cure" for this. The real cure lies in your mind - free it, let it go, just be ok with things in life that happen that you cannot control. I think this will help us all. My opinion only :)

(this goes to say that you should definitely practice all the methods Dr Wise has suggested, which btw he does mention that this condition sometimes comes from a regretful sex act, hence fearing about a disease?)

I also think that why there was a post on here about an "Unconventional cure" which involved Jesus/God or whatever... Religion can make you feel very good about yourself, studies show that religious individuals who practice their beliefs (at the time they are practising) have a different body chemistry - I will try to find the study. I'm not saying go out and be religious, but what I'm saying is that we need to start focusing on OURSELVES and not everyone else!

Put yourself in front of others, I know it's against all our personality traits, but try it

May God bless us all with a speedy recovery, and with the help of each other, may we be successful in overcoming our road blocks in our lives

[webslave]

That's a good post, sufferinginpain!

[carld]

If I can share my starter list that's in my signature...

Also try standing legs spread a bit...relax the belly and let it hang like a Buddha belly and put you hands together and point to the sky and slightly lean back dropping the pelvis muscles as if to pee...you will feel a deep stretch of your abs...it's a wonderful stretch!!!

[Danosu92]

Thanks for the reply's. Carld I am on a very similar protocol and have been for a few months. The only difference is the anxiety medicine, even though I have a history of panic attacks and anxiety. I was on medicine for years and now only take medicine as needed. I know I shouldn't focus on how long it will take to make a notice but about how long did it take for you to notice a significant difference? And one thing you said that I completely agree with is trying not to focus on it. But when you are doing a daily program it gets kinda hard, and of course staying positive can be tough during the tough times. But I am working on both and am hoping that with breathing exercises and meditation I can get both down.

[carld]

At 2 years after the protocol... Now it's just minor discomfort from time to time and I don't react to it.

[Danosu92]

Is there anything special I can do to alleviate the pain after ejaculation? I already do some internal work, meditate and such. The pain afterwards is sharp burning in the tip of the penis, in the urethra. It can hurt for a few days and if I ejaculate again it only makes it last longer so it can really build up. I also sometimes feel it shoot down my legs, which usually is sporadic. I try to relax my muscles after ejaculating and try to limit the number of times and how close it happens. But really haven't found much that helps yet, I already take clonzapam for anxiety but haven't really tried to use them afterwards. I have tried some basic NSAID meds but haven't had any luck. I haven't been on anti depressants since before this whole thing started, when I was younger I was on antidepressants because I would have severe panic attacks. I eventual got over them and stopped taking them, which makes me curious that they might help again, even though I was not fond of the side effects. Any suggestions would be awesome, I've had a few bad flare up lately, with the holidays and I haven't taken to good care of myself including sticking to my protocol. Time to get back to work.

Thanks,
Dan

[webslave]

I try to relax my muscles after ejaculating

No, during ejaculation relax all pelvic and leg muscles.
viewtopic.php?t=627

[Danosu92]

ahh that might help, as you know you make a few steps forward then a few back. But this def. seems to be my biggest problem, but I will try that.