Need some input! (I'm new)

[texandawg]

I'm 31 years old and been suffering from groin/genital pain for a little over three years. My pain has always seemed to be focused behind the right testicle. The pain can get so intense that it runs back of my thigh and sometimes even to my feet. After a couple days in a flare-up the area between my testicle and my inner thigh will be extremely sore. I can never tell if the pain is coming from the cords, the testicle, or the muscle in the area? Everyday seems to be a new challenge--some days I think this nightmare is over and have a good day while others seem to be the worse days of my life. I'm a travelling salesman so I spend many hours on the road in my car, which I know does not help my issue. The one problem that has really hit me mentally is when I'm in a flare state my creamasteric reflex (testicle retraction) is hyperactive to the point it's painful. I'm not sure if this has to due with the inflammation or is it a nerve issue. It's almost hard for me to remember what it feels like for my genital area to be in the relaxed state. The anxiety that this brings is overwhelming at times. Is this associated with chronic prostatitis / chronic pelvic pain syndrome in men? I have not found many of the posts mentioning this as a problem.

This what I have done so far medically for this problem. I have seen many urologist in Houston and been diagnosed with prostatitis, epididymitis, and prostadynia. I have taken all the antibiotics that I can with little to no relief. I have had testicular ultrasound (negative), a pelvic MRI (negative), CT scan (nothing). I have seen Dr. Renney in Houston for possible PNE. I have had nerve blocks, neurology test, and PT to confirm this diagnosis. With further research on PNE I don't feel I have PNE --- and even Dr. Renney was not totally convinced that PNE was my problem. My latest urologist recommended I see a general surgeon about a possible inguinal hernia, which I did in April. The GS recommended laproscopic hernia exploration in April. I elected not have this done because I wasn't convinced that this was the answer. Well two weeks ago in another massive flare up I decided to see him again and within a week I was on the table exploring for a hernia that truthfully my mind was telling me did not exist. I guess that shows the desperation I'm in. Although no hernia was found, he said that he did find a nerve that he thought was entrapped that he released. I'm two weeks after surgery and nothing feels different beside I have a three inch incision above my pubic area. So here I am now no better than I was three years ago when this started.

I have bought Dr. Wise book and think that this is the answer! I feel that somehow I have brought this on myself and that I'm making it worse with the anxiety and depression about the issue (especially the tight testicles and retraction of my penis during these flare-ups). I need advice of what others think of my situation and where I should go from here. I'm sick of feeling sorry for myself and I'm ready to get possible chronic prostatitis / chronic pelvic pain syndrome under control and back to the way I was four years ago. Your thoughts and suggestion are greatly appreciated.

[webslave]

I'm 31 years old and been suffering from groin/genital pain for a little over three years.

Peak age for this condition.

I'm a travelling salesman so I spend many hours on the road in my car, which I know does not help my issue.

I'd seriously consider a career change.

The anxiety that this brings is overwhelming at times. Is this associated with chronic prostatitis / chronic pelvic pain syndrome in men? I have not found many of the posts mentioning this as a problem.

The anxiety, pain, inflammation, bunched up balls -- all are typical of this condition.

I have seen Dr. Renney in Houston for possible PNE.

Whoa! How did you end up deciding that this rare condition (PNE) may be your problem before considering far more common etiologies, such as the ones we discuss here? Were you influenced by a doctor to go the PNE route, or by a PNE-oriented website?

My latest urologist recommended I see a general surgeon about a possible inguinal hernia ... I was on the table exploring for a hernia ... no hernia was found... two weeks after surgery and nothing feels different

Welcome to the exclusive club of men who had pointless surgery to fix this problem. My doctor, an "expert" in infectious diseases, decided I might have a dicey appendix, which was removed, for nothing. The surgeon involved, who was slightly embarrassed that he'd removed an essentially healthy appendix, said to me afterwards, and I quote: "Mark, stay away from surgeons." It was good advice, because I'd already started to obsess about the possibility of .. wait for it ... an inguinal hernia!

I need advice of what others think of my situation and where I should go from here.

Control the anxiety with Paradoxical Relaxation and/or drugs, stretch, get PT if you can, maybe a new career? Lots of other strategies are discussed here. Read.

[benzo]

this sounds all so familiar.

I too work in IT sales and spend quite some time in the car. I was able to avoid unnecessary surgery, thank god. One surgeon wanted me on the table for shortening the abdominal muscles and another uro told me I had Chlamydia and, oh yeah, an inguinal hernia. Everything was already arranged for surgery until I luckily decided to get a second opinion. No Chlamydia and not even remotely an inguinal hernia.

The only invasive procedure I underwent were intraprostatic injections. They did absolutely nothing. I played with the idea of having denervation of the spermatic cords but the doc was not to keen about it, since it is a procedure mainly performed on people who had a vasectomy or inguinal hernia and suffered subsequent nerve.

This guy wrote a whole book about it. I honestly think surgery is not the answer.

[CppsDad]

Your story sounds typical here. Much coincides with my own story (see my recently posted Success Story). I too get the "retracted" testicle discomfort, although it is better these days than before. You've had this long enough now to start looking for other answers. I'm glad you found this site - I think it is the most valuable resource I have come across for CPPS.

My advice is 1) Read as much as you can on this site. Your answers are probably here. 2) Start treating yourself. Taking action for your condition will be the most postive psychological step you can take. You'll feel better just starting treatment, and won't feel so much the "victim" any more. We all understand the psychological strain this puts on us. Depression is common, especially after 3 years of hoping for improvement.

One of the things about the Stanford/Wise-Anderson Protocol is that you have to BELIEVE in it thoroughly; healing requires sacrifice and more pain, and you have to have confidence in what you are doing. If you don't, I suggest a physical therapist who can tell you what is normal and what is to be expected. But if you can trust us, then you can get a long way. The way I looked at it is this: put your head down, and don't look up for 12 months. Just do the treatment, HARD, RELIGIOUSLY, and have no mercy on yourself. Do not evaluate you progress AT ALL during the year. The one step backward phase (after two steps forwards) will always hit you harder than the two steps forward helps, so best not to look at them. And be active here and let us know how you are doing. Use us for emotional support.

The best thing about the Stanford/Wise-Anderson Protocol is that it is mostly free, and far cheaper than meds and surgery in the long term.

Regarding your job, I'm not one of those that advocates quitting right away. If you love your job, than fight to keep it. I'm a computer programmer and sit a lot. But I've made it work, and I think giving up on my career would have added more anxiety to my life. So before quitting, evaluate what you situation is and make some good choices for you in the long term. If it turns out that you can't make it driving all those distances, than make a change. If your job is ho-hum, then consider making a change anyway.

So, TODAY:

1) Start stretching. Do it all, do it as often as you can. This will cause soreness and flare-ups.
2) Get a Theracane pronto. You can pick it up for <$50. Do trigger point work and massage on your entire pelvic region: perineum, abdomen, groin, hamstrings, buttocks, lower back, etc... This will cause flare-ups.
3) Do relaxation. This sounds particularily important in your case because you already recognize a tense state. Moment to moment relaxation will probably be particularily important to you.
4) Consider getting an evaluation with a physical therapist. You probably need it at this point. If you can afford it, schedule a few sessions. I'm one of those who has had a lot of success treating myself (especially with my wife), so if you can, pay CLOSE attention to what the therapist does so you can know what to expect, how it should feel, and can take that knowledge and treat yourself. Note that this will cause flare-ups too.

So you have some flare-ups ahead of you. But at the end of it all, I'm sure you'll see some improvement. This isn't a quick fix. But it's the PROACTIVE fix, and you will hopefully see results, both physically and emotionally.

Mike