My story and a few questions

[painman]

I'll try to keep this as concise as possible to avoid a super long message.

Background Info: Back in 2006 I had unprotected sex with a girl who was known to be promiscuous (I didn't know she was promiscuous until after when a reliable source told me she was VERY promiscuous and I later spoke with her and she admitted that she she suffered from sex addiction but was seeking treatment). I felt fine after the encounter until about 3 days later. I woke up one morning with severe pain in my right groin with a very swollen and painful lymph node on the same side. I could barely walk. Went to my doc and told him my story. He said it was chlamydia or gonorrhoea, no question about it as the symptoms were textbook (that's what he said at least). He ran a test for all STD's and then gave me a script for azithromycin. I took the single dose and my lymph node returned to normal but the symptoms of burning urination and groin pain continued. Much to his (and my) surprise the test for STD's all came back negative. No bacteria or WBC's were found in my urine either. The doc was puzzled but said it must have been a false negative since the antibiotics made my lymph nodes shrink back to normal, although he was confused that the pain persisted. Starts me on 7 days of Cipro. No effect whatsoever. Go to a uro who confirms that he believes it's chlamydia based on symptoms. Puts me on 2 months of doxycycline which also does nothing at all except destroy my stomach. Stop going to doctors and realize that my symptoms are here to stay. Become depressed/hopeless about life in general. This was almost 6 years ago and I still have these symptoms to this day. I also eventually developed generalized lymphadenopathy and chronic fatigue shortly after the onset of this. Note that before the sexual encounter I was a very fit health conscious person. I was ripped and in great shape, people always complimented me on how healthy and fit I was. A very happy, well-adjusted young man with many goals in life. I became a completely different person after as a result of the constant pain and fatigue. It has severely impacted my quality of life, ended relationships, prevented me from seeking career and life opportunities. The only reason I'm even alive today is for the hope that someday I'll be cured. Some of the best years of my life have been lost. It's been a humbling experience to say the least. Now, I'm looking to rid myself of this thing. I refuse to let it control my life anymore. I've ordered A Headache in the Pelvis and am awaiting it's arrival in the mail.

Now that my story is out of the way, I have a few questions. I'd be greatly appreciative if they could be answered.

1. What is the cure rate of people who use the methods promoted by this forum? Just looking for a general idea of the likelihood that I'll recover.

2. How long does it generally take to recover? I've had the condition for close to 6 years now. Does the duration of having it decrease the chances of recovery?

3. What are the chances of this being an infection, or at least triggered by an infection? I find it VERY hard to believe that my sexual encounter with a known sex addict, which produced textbook symptoms of a chlamydia infection, has nothing to do with the pain that I now suffer. After all, chlamydia causes PID in women, why not chronic prostatitis / chronic pelvic pain syndrome in men? I'm almost certain it's muscle-related based on my response to therapies like stretching and quercetin (they help), but I just find it to be far too coincidental to not be related to my encounter.

4. Does anyone have a good link to useful stretches I can perform? I know the book has some good stretches but I don't want to wait for it! lol

5. Does the chronic fatigue resolve once the chronic prostatitis / chronic pelvic pain syndrome symptoms go away? I've noted in the past that when my CP/CPPS is mild my fatigue is less as well, but my energy level has never been the same since this started.

6. If my condition wasn't triggered by an infection, what else might cause the swollen groin lymph nodes I had when this all started?

7. And lastly, is there really any hope for me resuming a normal, productive life? A life in which I can love others, achieve goals, and feel happiness again? I may be wrong, but i feel that many who become symptom free must do so at the cost of many aspects of life. I hope this is not the case.

Thanks in advance, I'm glad there are some people I can relate to.

[webslave]

Your case sounds a lot like mine.

1. Cure rate: if you are diligent and maintain the effort over a period of 6 months to 2 years, the likelihood that you will recover to normality (95-100% normality) is high, based on people who have stuck it out here while they went through it (and based on study results).
2. Time to recovery: months usually, and for some up to two years. In my case it kept getting better over many years. It was like ascending a staircase. This is not like a cold or flu, and nerves take a long time to heal, and will only heal once they are left to heal. Wise had it 20 years and got better after 2 years. If you've had it a shorter time, it may make the therapy shorter too.
3. Infection: it's not an infection, although infection can definitely be a trigger. Any pain in the area can start a guarding action in the muscles surrounding, and the highly sensitive nerves in the region are prone to wind-up and allodynia.
4. Stretches: the book has many, and some are discussed on this forum too, so you'll have to search.
5. CFS: mine resolved, but sloooowly. You need to be careful to get stress out of your life. Have a restful, peaceful lifestyle. Investigate gluten, you could be sensitive to it.
6. Lymph glands: painful lymph glands all over the body is a CFS symptom. Immune system is revved up. Chronic, severe stress can do this.
7. Normal life: yes, but it'll probably be a life where you walk instead of run (physically and psychologically). Your CFS and chronic prostatitis / chronic pelvic pain syndrome will return if you try to live full throttle (lots of exercise and tons of stress). Speaking for myself, I avoid gluten completely (it's a nerve poison for people who are sensitive to it), I pace myself physically (I can be very active but if I do too much I can get a touch of fatigue that takes a day or two to clear), and I have adopted a lifestyle that limits stress (I used to lead a team of people in a computer environment with tight deadlines, stress city, where I used to occasionally feel panicked by stress).

[painman]

Thank you very much. That was extremely helpful.

[davyboy]

Hey painman,

You are in the right place. There is a ton of awesome resources and helpful information here. And webslave is the man he usually can answer any question you have.

Do not lose faith and try to stay positive. Our bodies are remarkable devices and yours is just trying to communicate to you that it is in pain and you have to make some changes. It will get better.

When I arrived on this forum I was anxious and I thought that chronic prostatitis / chronic pelvic pain syndrome was a death sentence. It is actually a blessing. It is teaching me to be patient and to to just relax. Its forcing me to make lifestyle changes that ultimately in the end will benefit me in the long term.

I have only been battling with chronic prostatitis / chronic pelvic pain syndrome for a few months (I know, I'm lucky) and things have already improved for me in a few weeks just by doing stretches and external self massage. I would seek out a physical therapist who knows about pelvic pain.

I have been following these stretches about 3X a day:
http://www.freewebs.com/trydent78/

I've also added a few others in. Do not underestimate the power of trying to lengthen those shortened muscles and trying to massage those tough knots out. They are causing your problems. It sounds crazy but its true. I have been training like a pro athlete for about 18 months and its no coincidence that all of my squats, abdomen flexes and lunges provoked this. It is a muscle problem. Today I was feeling great so I decided to attempt some push ups and literally in 5 mins I felt the numbness in my penis, burning at the tip and I had to pee. Two steps forward, one step back. You gotta be patient and stick with it.

Stay positive things will get better. People come back from worse things than this. People survived the holocaust and became successful individuals. Our bodies are remarkable and if you just listen to it you will bounce back before you know it. People who are told they will never walk again, learn to walk again. Have faith.

Also don't pay attention to anything else on the internet about prostatitis. There is a lot of crap and hopeless despair out there. Don't buy into it. This is the real deal.

[davyboy]

Also painman, I am your age. I know how it feels to deal with this.

I'm a young, ambitious, athletic guy, who has the whole world ahead of him too. This is just a small hurdle you have to overcome.

[painman]

Thanks a bunch guys. I really appreciate the support and kind words. I have never met another person with CPPS. I felt alone in the world, at some points I thought I was losing my mind. I'm glad I found this forum, it's a blessing. I like what you said about the holocaust. So true. Imagine how much stress those people were under! Far more than anything I've experienced and they still recovered. An excellent way of looking at it!

[bobby]

Just stick to the protocol and in no time you'll be fine. I have been dealing with this for about 5-6 years like you and I have been doing the protocol for about 5 months now and I am seeing great results. Just never give up and you'll recover. Also the book will tell you this but I'll just tell you now, setting a time frame care create anxiety which in turn will create more pain. I look at it like this, I have been suffering for 5 years now, whats a year or two more of my life to beat the suffering and get better. So good luck, stick to it, don't get frustrated and just relax.

[wrcftw]

Remember this: It will be the greatest day of your life when you wake up and go through the day symptom free. You'll feel reborn and approach life with compassion and peace

[painman]

Hey everyone!
It's been a while since I've posted on here but I've been quietly following some of the post. It doesn't look like this topic had come up recently and I was only able to find one post from a while back that even made reference to this issue.

As a result of taking up meditation, doing breathing exercises everyday while driving to and from work, changing my overall attitude toward life and this condition in a positive way, resting and relaxing more, doing hip mobility stretches 3 days a week ( don't do internal massage because I have not found it to be effective), getting 8 hours of sleep a night, and following a very healthy diet along with smart supplementation (zinc/magnesium before bed, getting vitamin d levels in the healthy range, theanine and ashwagandha as needed) I've been able to get my pain down to about a 2 out of ten from about an 8 out of ten when I was at my worst. My erectile dysfunction has improved as well. I can now get solid erections relatively easily ( although I still need some improvement here), which is very encouraging. Nevertheless, I'm having a new issue now.

For the past few months I've had a pretty much constant rash on the glans of my penis which is now starting to travel down the shaft of my penis. The best way to describe it is that it looks like a red rash with little red bumps in some areas but red skin with flaky dry skin in other areas. It tends to be more flaky on the shaft and more red and bumpy on the glans. It doesn't itch very much but it does hurt a little when the glans rubs against the inside of my boxers. It seems to be associated with my chronic prostatitis / chronic pelvic pain syndrome , strangely. If the rash gets irritated it can mildly flare my chronic prostatitis / chronic pelvic pain syndrome and cause perineal pain and stinging. I've looked at many pictures of herpes, fungal infections, and psoriasis of the penis on the Internet to perhaps get somewhat of an idea what it might be. It doesn't look like herpes and the time table simply doesn't match up (it lasts too long and there are never blisters). It does resemble a fungus quite a bit and it tends to have a foul odor too sometimes which makes think it is a fungus, but it doesn't respond very well to anti fungal cream other than getting less dry. It does look like psoriasis a little, but it would be a rather mild form if that's what it is. The only thing that really helps it is coconut oil to moisturize and hydrocortisone cream which reduces the inflammation, but it still remains to some degree and never seems to fully go away.

Does anyone have this symptom? Any suggestions a to what it might be or how to better treat it. I've been tested for STDs so I doubt it's that. It adds to my insecurity about my genital area and has prevented me from pursuing women. It seems like just when my chronic prostatitis / chronic pelvic pain syndrome was starting to really improve this had to pop up :/. Any advice would be greatly appreciated!

[webslave]

The skin sounds macerated. I would get the skin swabbed and tested. The foul odour suggests a bacterial infection.

Google "intertrigo", and look at Google images too.

[painman]

Thanks. I looked at quite a few photos and it doesn't look like that really. It looks most like psoriasis or a fungus maybe. I will go to my doctor and try to get it swabbed but I doubt he will. I showed it to him when it was mild and he said it was just irritated and to stop masturbating for a little. This did nothing though and it still flares even if I take a few weeks off from masturbation. I may try an antibacterial cream. I'll report back with what happens.