This forum is a godsend! (davyboy)

[webslave]

Gluten directly affects nerves in people with celiac disease. You can read about it on many sites.

[davyboy]

Quick Little update here:

So I've relocated to a new city and I was a bit concerned that I'd have a difficult time finding a new PT that understood pelvic pain.

I found one immediately. Had my first appointment yesterday. She is very knowledgeable and I actually think shes a little more holistic than my previous PT. She noticed I tend to stand with my pelvis too far forward. It seems I've gotten into this habit from clenching buttocks (which I do to compensate for the lower back pain I get from flat feet). Crazy how the body works. Anyways... She immediately went to work internally. Very gently, essentially providing me with biofeedback, palpating the internal muscles and showing me how to relax them. I was very pleased with the session. If anyone in Vancouver is looking for a PT check out Synergy Physiotherapy.

I am feeling pretty well these days. I'm off dairy and gluten. Eating tons of vegetables. Regular, light exercise. I still have terrible discomfort post sex. I usually throw some heat on my abdomen after and it seems to help. I'm still hyper sensitive in that area. Pants sometimes can irritate me. Urination is still frequent but I no longer have the constant need to go. I also have occasional discomfort in the penis and in the area generally but I'd say its like 2/7 days.

One particular question - A lot has changed down there for me. I'm noticing a lot of buzzing and fluttering feelings in the perineum, my buttocks and kinda in my genitalia. Is this a good sign? (According to what others on the forum have reported it seems to be).

[davyboy]

Sorry I don't know if it actually is a "fasciculation" because its tough to observe it to actually see if the twitches are happening on the surface. Lots of activity down there though. Buzzing, fluttering and tinglings, nothing painful. I noticed that my abs started doing this crazy spasm every once and a while. Almost bouncing up and down. Its not painful just really bizarre.

[davyboy]

Webslave & Company,

I was tested for Celiac's disease today and the test came back as negative. Now I understand that there is a difference between gluten intolerance and Celiac's disease.

Any suggestions how to proceed?

[webslave]

If the only symptom you have after eating gluten is fasciculations, then it may be coincidence and not causation. Look up the symptoms of gluten intolerance and if they fit, continue avoiding it.

(BTW, the fact that you have largely avoided gluten recently may have invalidated your celiac disease test, so don't be too confident of that result.)

[davyboy]

Oh, I ate a TON of wheat the week before the test.

[davyboy]

Has anyone here sorted out which is the most comfortable pair of underwear? I find that that can be my greatest irritant at times.

Suggestions?

[dvdx2]

Sloggi's!

[webslave]

I suggest dressing the penis in a loose bandage. This prevent unnecessary friction with underwear and allows nerves to settle.

[davyboy]

Feeling 90% these days, aside from mild irritation. I can sit again without too much difficulty. I can actually have sex again. Sex no longer causes a flare up.

Hi Everyone,

I know that it is a common thing on this forum for men to post a lot when suffering and then just disappear. I don’t think I had it as bad as some of the men on the forum, but I’ve had it bad enough that it caused me to radically alter my life. I thought I would update everyone on my progress for those of you out there who are still suffering...

I am basically at the point now where I live my life comfortably 95% of the time. I have made some drastic alterations since my bout with chronic prostatitis / chronic pelvic pain syndrome began. Here are a couple of things that have helped me

1. Yoga/ Stretches / Deep Breathing – This seems to be huge for me. I actually find yoga above all to be a great weapon in the battle against CPPS. I do stretches every morning. I do stretches every night before bed. I ALWAYS stretch after sex.
2. Find a good PT - Mine has helped me a lot. She realized there are muscles outside the body to target and release. Do not neglect the external stuff / symmetry is super important!
3. Proper Exercise – I do cardio nearly everday but I always balance it with proper stretching and yoga. I take very good care of my muscles now. I usually sit in the bath tub daily (sometimes before work and after work). I avoid squats and exercises that target the abdomen specifically.
4. Sexual abstention – During my dark days with chronic prostatitis / chronic pelvic pain syndrome sex was uncomfortable and impossible. It would provoke a flare. Now I’m at two times a week, so usually a 3-4 day break in between. ALWAYS STRETCH AFTER, follow the protocol Webslave has suggested with relaxing during sex.
5. Diet/Supplements – I have done my best to adhere to a Paleo diet and avoid gluten. I avoid alcohol / smoking too. I take garlic/fish oil/ Quercetin/magnesium supplements. I try to consume a ton of vegetables and anything that is anti-inflammatory in nature.
6. Mindset/Perspective – I think this above all is the biggest thing. My chronic prostatitis / chronic pelvic pain syndrome began when I was severely depressed and anxious. I began to focus my energy on new things and stopped dwelling on my symptoms. I think depression ushered it in. I wasn’t managing my emotions and stress well. I was exercising hard and not stretching too. This has helped me hugely. I have noticed a strong connection between my thoughts and my symptoms. I have OCD and that can cause me to obsess about my problems. I noticed that my chronic prostatitis / chronic pelvic pain syndrome has been literally non-existent while I have other things to worry about. Try to channel your thoughts and energy into positive things. To me this attests to the power of the mind in shaping your symptoms. Stop worrying and dwelling on CPPS! Move on with your life. Don’t identify with it or let it shape who you are.

[wrcftw]

Glad to hear it buddy...I'm very well again. Let it give you confidence that you were able to beat something so difficult! And remember, if it comes back, you now have the tools to quiet it down quickly and no be paranoid that it will never go away, as you have evidence that it can!

[davyboy]

So I was diagnosed by my doctor yesterday with an inguinal hernia.

I remember when this whole thing began it started with me feeling a popping sensation and pain referred to my penis.

Anyways, I'm not sure what came first the chronic prostatitis / chronic pelvic pain syndrome or the hernia - but I will be having surgery on it soon and I hope that it will help correct other issues I have (I still can have some strange discomfort during sex occasionally). I will continue with my stretches and relaxation because they seem to provide me with benefits in other areas of life too.

[painman]

Hey davyboy, glad to see you're recovering! I have to say that you're case sounds remarkably similar to mine with the exception that you addressed the underlying cause of your issue much sooner after it developed than I had. Like you, I had been incredibly physically active before developing CPPS. I followed a fitness program called Crossfit for years before developing chronic prostatitis / chronic pelvic pain syndrome and looking back on it now I realize that all the high-intensity exercise done on a daily basis was doing much more harm than good to my body than I had realized. In fact, I now believe that all that extreme exercising is actually what directly caused my initial dysregulation of the HPA-axis and the chronic prostatitis / chronic pelvic pain syndrome and other symptoms that came along with it. Exercise is healthy, but taken to the extreme the way many fitness buffs tend to is clearly very detrimental the long-term (and probably even short-term) health and longevity.

The program that I'm currently using for treatment is actually quite similar to yours and has been providing slow but consistent results so I think we're on to something here. I plan to post a detailed description of what I follow and what I've found helps the most and what was a waste of time. I think a major take-home message here is that awareness of the underlying mechanisms and proper treatment of chronic prostatitis / chronic pelvic pain syndrome needs to become more widespread in both the medical profession and the general public. If I had known all of this information about proper treatment when I first developed chronic prostatitis / chronic pelvic pain syndrome symptoms I truly believe that I would would be pain free and 100% healthy today. Instead, I continued on with my excessive exercise routine even after the chronic prostatitis / chronic pelvic pain syndrome began, thinking that it was actually going to help the condition. In reality, I believe it made it much worse and only delayed recovery. So glad to see things are going well for you, please keep us posted on your progress and let us know if anything else helps out!

[davyboy]

Hi Painman,

Thank you for your comments and well wishes.

Yes! It seems like there are parallels between our experiences with CPPS. I essentially was following a similar exercise routine as you. I was partaking in intense/strenuous at home workouts (P90X and Insanity). Anyways I believe that the intensity and my lack of stretching + not alternating my diet played a big role. I was training like a pro athlete but not taking in the proper foods. As well, by nature I have an anxious disposition and I was entering a stressful / depressing period of my life. Anyways, not sure if it was the depression or the exercise, not sure if it matters. My mental disposition has improved since my early days and I am feeling better since I removed the crazy workouts. When my pelvic pain first began my Doc told me to have "lots of sex and continue to work out hard", giving me 50 days of Cipro. I knew something was fishy! My prostate was inflamed but this all began with a painful sensation in my penis when having an erection. I immediately suspected my exercise routine and felt as though I was on my way to developing a hernia or something...

It was too coincidental I felt strange sensations in my abdomen and groin when I was exerting myself during exercise. I never paid any attention to this and I was terrible at taking care of my muscles. I never stretched properly.

I find most relief from good sleeps, baths, relaxing, yoga, staying active (lightly) and an anti-inflammatory diet. The yoga seems to be helping so much. All those stretches and deep breathing. I do 45 mins before work everyday. Honestly, the only thing that really really seems to bother me is the sexual aspect. Something still isn't right 100% down there. I am hoping that my hernia surgery will fix that up. I'm trying not to obsess about it too much. I'm pretty lucky, I see very little relationships between my symptoms and coffee/alcohol. I can drink beer, I can drink coffee and I don't feel any sort of exacerbation in my symptoms.

Anyways, enough ranting. I feel for you man! I was super upset when this all began and I am doing much better but I'm not out of the woods yet.I'm so grateful for this forum, Webslave and the AHIP authors - without it I would be lost and still living my life the same way, trying to figure out why Cipro wasn't curing me.

[Wolfcub]

Davyboy, glad to hear about your progress. I've also started to get interested in Yoga for stretching and relaxing.

About your inguinal hernia - is it direct or indirect? Please bear in mind it might not be directly related to the CPPS, yet in my opinion it's a good thing to get it fixed.

Mine caused me symptom throughout the years, but they were more acute in nature and not related to my CPPS. Nevertheless, it might contributed to the CPPS, who knows for sure (my hydrocele first appeared in 2002, in 2004-2005 I was in a stressful period mentally speaking, in 2005 the hernia's symptoms got worse and in Summer 2005 the chronic prostatitis / chronic pelvic pain syndrome "party" down there began - with urinary frequency at first)