UCPPS - Prostatitis, Interstitial Cystitis Forum

I have a constant penile pain at the base of my penis or just above the base . It is chronic and nothing seems to relieve it. It began abruptly in the middle of the night with other prostatitis symptoms (difficulty urinating, week stream, etc.). Although the urinary symptoms are bad enough, the constant pain is horrendous and debilitating. The only thing that seems to help is the drug Ambien which I take several timed during the night in order to to sleep through the night. My urologists gave up on me after not responding to standard prostatitis treatment. My PSA was only 1.0 and had a normal DRE so no prostate ultrasound , EPS or prostate were done. Just 3 trials of different antibiotics. After not responding, they said that I probably had chronic prostatitis / chronic pelvic pain syndrome and said look luck and gave me no further advise of what to do. I have just started looking at this site to try to decide what to do next. I am confused at all the options that people are recommending from diets, Stanford/Wise-Anderson Protocol, PT , exercises, special diets, etc. I am willing to do any of these if I it would help but I can't do them all but my resources are limited. As it is, I have had to nearly shut down my business, my marriage is suffering and I am in a living hell mainly because of this constant pain at the base of my penis which I can not escape. I also have become dependent on Ambien as well as Xanax to calm me down.
I guess my questions is: . Has anyone else had a similar penile pain and what helped relieve it?


Wayne G.


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My life has drastic have already lost .


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I guess my main questions is has anyone eleto seek help
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Also for years I would wake up about 1/month with sever prostate pain many times . I have read that similar condition was actually a com on rectalpain called "Proctalgia Fugax".
However, mine seemed to be more likely to occur after having sex or wearing jockey shorts to bed.

Present symptoms.
Almost constant urge to urinate. (Major symptom.)
Feel like a restriction like discomfort in my urinary track upstream of my penis.
Week stream. Interrupted stream
Difficulty starting urination.


Feeling that bladder is not emptying (voiding).

Urinate during the day and night (wake up) every 2 hours or less.
I have has a high level of discomfort (7 on a scale of 10) since this began on 9/9.
It is difficult to concentrate on anything else and has been debilitating.
II have remained for the most part at home.
I have lost almost 30 lbs since this began on 9/9
Things to ask:
I have been on Cipro for to 10 days and now on Doxycycline: Neither has helped. What about an EPS -a prostatic massage for prostate fluid be tested for and cultured to make sure it is sensitive to the antibiotics I to determine if this a biotic in orgin or not and to determine the right antibotic.

gifford wrote:Also for years I would wake up about 1/month with sever prostate pain many times.

I have been on Cipro for to 10 days and now on Doxycycline: Neither has helped. What about an EPS -a prostatic massage for prostate fluid be tested for and cultured to make sure it is sensitive to the antibiotics I to determine if this a biotic in orgin or not and to determine the right antibotic.

1) Stop taking antibiotics and worrying about nonexistent infections.

2) Buy a copy of "A Headache in the Pelvis" and follow the advice of others who have had success with paradoxical relaxation and trigger point release.

3) Work with your doctor to get off Ambien completely, and only take Xanax when absolutely needed (e.g., major chronic prostatitis / chronic pelvic pain syndrome flares or anxiety attacks).

4) Try quercetin if you haven't already.

5) Read, read, read this forum! Sorry if all the advice seems a bit overwhelming at first.

gifford,

Sounds a lot like me. I too suffer from the penile pain. My pain is usually always at the tip(comes and goes) but is almost always just there in general right up and down my penis, giving me a general feeling of discomfort which at times can be more then bareable especially when I begin to worry about it. Traditional doses of antibiotics, such as Cipro, did nothing for me either. Having a Uro throws his hands up and give up on me is something else I have had to endure like you. There have been times where I have just wanted to give up myself because there was no relief in site............and then I stumbled across this site.
You are not alone! If you read many of the posts on this forum you will find more sufferors like you and me.

I can't really tell you much about how to realive your symptoms but others on this forum can help point you out in the right direction I'm sure.
What I can tell you is this, you have to find a way to relax and calm yourself down. When I begin worrying about my symptoms they tend to get worse!!! When I begin to worry or stress about something else like work, then my symptoms begin to show themselves a little more predominantly. The more I stress about anything the more my symptoms start getting worse.
So my advice to you is try and find a way of relaxing be it meditation or one of the many other methods that the rest of the guys on this site talk about. Hopefully you will notice some improvement and then you can begin looking into all the other methods of treatment with a clearer mind.

MastCells has it right read, read, read this forum.

I would start treating yourself with the Stanford/Wise-Anderson Protocol immediately. It is free to do, it is something you do on your own, so you might as well put that plan into action while you are considering other options. If you want to try diets, drugs, or other treatments, you can at least have the peace of mind knowing that you are going full-forth with the Stanford/Wise-Anderson Protocol right now, which also happens to be the protcol that will most likely solve your problems (the statistics bear that out). Plus, at least for me, starting a protocol that I believed in was a major step forward for me emotionally, and that lift alone was worth the energy I put into it. In the beginning, your faith in the protocol will be minor, so you have to trust us and just force yourself to believe it.

Your symptoms are common for CPPS. If the doctors have ruled out other things, than you have to seriously consider yourself a chronic prostatitis / chronic pelvic pain syndrome patient. If you want to continue to search for other diagnoses, that's fine. Especially if you are going to start up with the Stanford/Wise-Anderson Protocol at the same time. Then at least all bases are covered.

Having a spouse is a big bonus for the Stanford/Wise-Anderson Protocol. She can help you, and do EVERYTHING you need that you can't do yourself. Use her as much as you need to get through this.

Also, don't feel bad taking the drugs right now. Use them while you are recovering, and you can deal with the problems that the drugs cause later. I'm not advocating addiction to drugs, but a Xanax addiction is less destructive right now than your pain. Still, as always, be smart about these things.

So, starting tomorrow, do the following (the Stanford/Wise-Anderson Protocol in a nutshell):
1. Comprehensive stretching of the groin, perineum, abdomen, hamstrings, buttocks, and lower back. Do searches for stretches on the board.

2. Full external massage. Penile pain can be caused by abdominal trigger points and tight abdominal muscles. Work from around your belly button all the way down into your pubic bone, holding the trigger points for 90 seconds or so, and rolling them or just pushing straight on them. Work your abdomen like a cob of corn. Also work your perineum and lower back muscles. External trigger points and tight muscles are key to chronic prostatitis / chronic pelvic pain syndrome pain. Buy a Theracane (pictured up top), and use it to help you.

3. Relaxation therapy. This will help with anxiety, will keep muscles that you have loosened (via therapy) from tightening again, and will help your body overall. This is NOT to be overlooked. You need some "me" time to start healing and get yourself back to a balanced state emotionally. I'm guessing running your own business is stressful, so you might be dealing with stress internally in a damaging way. (consider taking stress and anxiety management classes, and relaxation classes, if you have access to it via a health plan or otherwise).

4. Internal therapy. Your wife can do much of this for you eventually, and you can do most of it as well. But first, you should get a few treatments from a professional if you have access to one. That way you can learn what needs to be done, and then do it. It's not that hard.

I know this early time can be confusing. The odds are you have a lot of things working against you all at once here. That's the nature of chronic prostatitis / chronic pelvic pain syndrome (if you have it). It takes a while to unravel the various pain contributors, but eventually, things will calm down. But early on, removing a few pain sources will not appear to help you, and you may get discouraged, due to the fact that so many other places are still causing pain too. Plus, as you improve the muscle conditions, the nerves themselves then have to heal afterwards, once again leading to the feeling that nothing is working. So be patient, stick with the protocol for a minimum of 6-12 months, and don't evaluate your progress with it until the end of the 12 month period. At the very least, you'll be healther and more stretched out! And if the Stanford/Wise-Anderson Protocol causes MORE pain, that's a good sign. Oh, and buy the AHIP book or check it out in the bookstore.

Michael

CppsDad,
Thanks for your reply.
Did you actually attend the 6 day Stanford/Wise-Anderson Protocol at Stanford or just read "Head Ache in the Pelvis" and do what it suggested. I ordered the book but it has not arrived . I know there no quick fixes but I need to do something soon to help me with the extreme penile pain. For some folks the pain seems to be an annoyance after sex, occasionally, etc. For me it is extreme and constant.

I am just learning all this chronic prostatitis / chronic pelvic pain syndrome about all these term -trigger points,etc..
What are they and how does knowing where they are help me?. Can I find out where they are from Dr. Wise's book or do I need to see a PT.I
Or are they just just something that at PT needs to know?
That's another issue.
I see a lot of folks have a PT .But it looked like just any PT won't do.
Do you have a PT?
Is one necessary?.
How do I find one in my area - Eau Claire WI that works with chronic prostatitis / chronic pelvic pain syndrome folks.
I called all the PT's in my area and spoke about CPPS. None of them knew what I was talking about nor had any recommendations. I even spoke to Dr. Wise at the Stanford/Wise-Anderson Protocol about many of these things . He just recommended taking his seminar.
I have pent countless hours reading this site which has also effected my business If I tried to do everything it suggests, I would not have a business and maybe not a wife. All this time researching MY pain has hurt our relationship.
In any case, I look forward to hearing back from you.
Gifford

Wayne, be sure to try a quercetin product like any accredited quercetin product as well. It helped me a lot. any accredited quercetin product and any accredited quercetin product help a majority of men with pelvic pain (statement supported by placebo-controlled study). I notice that your posts are a little disjointed and incoherent, which is strange coming from a highly educated man like you (you have a PhD), and it makes me wonder how much Xanax and Ambien you are on, and how much actual sleep you are getting. I see you are involved in chemicals. Unfortunately, I suspect that's one of the risk factors for developing pelvic pain (and CFS). Over the years I have noticed quite a few patients involved with that industry. So try to minimize your contact with chemicals if you can. Don't breathe any fumes especially. You also seem to be under a LOT of stress. That's another huge risk factor. I'll let CppsDad answer your other questions.

CppsDad,
Thanks for your reply.
Did you actually attend the 6 day Stanford/Wise-Anderson Protocol at Stanford or just read "Head Ache in the Pelvis"

No, I did not attend the clinic. I did, however, buy AHIP and put the SP into practice full force, although most certainly I did not do as well on the relaxation portion of the treatment as I would have had I gone to the seminars. For me, the book was more important as a validation of my pain than it was a learning experience. Yes, it was on the right track for me, but personally, I didn't like the writing (sorry Dr. Wise). But no matter, the subject matter was great and it taught me a lot. The current version has trigger point diagrams, and these are no doubt helpful (I haven't seen them myself).

For me, the seminar's cost was prohibitive. Instead, I saw a PT, and spread costs out over many months, rather than throw it all on one week in Stanford. If you run a business, I suspect that a week off will be hard for you. You certainly don't want to INCREASE your stress. But if you decide to go to the clinic, I'm sure it will be worth it. In my case, the PT was great, and spending a few hundred dollars for a few sessions a month was a better plan for me. Plus, I learned from what the PT did, and now treat myself exclusively. I'll never pay another cent for this condition again. My Theracane was the best $50 I ever spent.

I am just learning all this chronic prostatitis / chronic pelvic pain syndrome about all these term -trigger points,etc..
What are they and how does knowing where they are help me?. Can I find out where they are from Dr. Wise's book or do I need to see a PT

Trigger points are essentially areas of muscle tissue that are locked in tight wads, decreasing blood flow, and irritating other muscle and nerve tissue, eventually causing all sorts of pain. Touching them can be very painful when you find one, and it only takes a little bit of time to realize how much pain they can distribute throughout the region. Dr. Wise's book has diagrams and descriptions of these, and you can probably find info on them on the web, as they are not exclusive to chronic prostatitis / chronic pelvic pain syndrome (they exist in necks, and backs, and stomachs too). To break down a trigger point, you literally have to push your way through it through brute force (direct pressure), indirect release via stretching of the muscle, and therapeutic healing via massage, heat, etc... After breaking down a trigger point, you can get your muscles to the point where they can start healing. After this, when blood flow is normal and there is no tension, the nerves will also heal. It takes a while so you have to be patient. Note that tight muscles can cause pain too, even if they are not technically a trigger point and aren't overly sensitive to touch. Your PT can help you identify them (since you don't know what they feel like), but you could identify them yourself too. Basically, if it hurts a lot when you press on it, you can consider that an area to work on. Internally, trigger points feel like little peas, or rocks, when pressed on.

I see a lot of folks have a PT .But it looked like just any PT won't do.

True, and not true. My wife learned to do the protocol in 2 sessions, and is as good or better than the PT. I don't think it's THAT hard. Don't be terribly worried about this. Find a PT that KNOWS what they are talking about, get a few sessions, then you will have some experience. If your wife can go with you at some point, even better. If you can't find ANYONE, I have a great recommendation for a PT near Stanford that I saw. You can fly in for one or two treatments, and he is eager to teach EVERYTHING he knows.

Do you have a PT?
Is one necessary?.

As stated, yes, I had one. I tried it myself at first, but there was too much pain and I didn't have confidence. I used a PT for 3-4 months, and it was 100% worth it, as he taught me what I have to do to treat myself. A PT is not necessary long term, but I think they are necessary to train you, otherwise you won't follow-through, or you will be too scared to hurt yourself to get anything out of your own therapy.

Just get started on all the treatments other than internal therapy (do the external trigger point work). Worry about find a PT after. After reading this tonight, start your stretches and relaxation.

You also seem to be under a LOT of stress. That's another huge risk factor.

This is 100% correct. You have to learn to modulate how your body reacts to stress. You can't always remove the stress, but you CAN start by learning to deal with it in less damaging ways.

Mike

I agree with CppsDad about starting the Stanford/Wise-Anderson Protocol. It has helped me as well.

It is very important to try to relax. I realize that is very very very hard for you to do at this time. The pain is quite severe and drastic, and the abandonment role of doctors in the ailment only makes it worse.

But relaxing is important for your recovery. Also, this will take a while to improve significantly, so you will need to take a 'long haul' attitude, and shouldn't be too hard on yourself in the short term.