Dietary Modification - only hope left?

[roberth]

I would first like to say thanks to webslave for hosting and supporting this forum. I've suffered with Prostatitis, this living hell, for 28 months. My symptoms include:

1) Pain in perineum
2) Pain in lower back
3) Urge incontinence
4) Painful, burning urination
5) Post ejaculatory pain
7) Rectal pain (like somebody shoved a hot coal up my butt)

Treatments:
1) Doxycycline and Levaquin
2) Saw palmetto, pygeum, nettle leaves and heroic doses of quercetin
4) Flomax
5) Trigger point therapy with pelvic and lower back exercises

All treatments yielded only limited success.

Next treatment:
After two years of suffering and reading many posts on this forum I decided to alter my diet to see if it has any affect. I have stopped drinking milk, coffee and tea but symptoms remain. Next I am going to try and avoid gluten. Only within the last 2 or three years have I started eating rolled oats for breakfast. This has been the only major dietary change within the past 5 years. I plan to post a follow-up in the forum on my progress. I am hoping that gluten is the problem because I am running out of options.

[CppsDad]

Some excercises can actually exacerabate the condition and strengthen the very muscles you are trying to loosen and break down. How do you feel about your physical therapy? Was your therapist hitting the right spots? Did you do any massage and stretching of your stomach, abdominal, and lower back muscles? Because your symptoms are so in line with the symptoms of pelvic floor dysfunction, I hope you haven't truly given up on the potential of the SP. Your case may be particularily tough, and therefore require more dilligence.

But, it certainly can't hurt to give up gluten as webslave has mentioned many times. I myself haven't tried that approach yet but I suppose if things weren't working after a few years, I would definitely start making more modifications to my routine. The other thing to keep in mind is that perhaps some of your other strategies WERE working, but dietary (or other) things were getting in the way from you truly healing. In other words, if the gluten starts working, I would kick up the other therapies as well since the gluten by itself may be only a part of the problem, and you won't want to have abandoned everything else altogether in the hopes that gluten by itself will solve your problems.

Mike

[scotsman]

roberth - did you do any relaxation as part of your treatment? How long and what was the frequency of your triggerpoint sessions?

Richard.

[roberth]

Gents,

In response to your replies I've been seeing a PT for the about the last three months, about every 2 weeks on average. I exercise my lower back, pelvic muscles and abdominal muscles as instructed. She also found trigger points near my perineum ( the muscle group escapes me) and worked to smooth away the knots. This has given some limited success but I will admit that the pain always comes back. She did mention that she could look for trigger points in the rectum. She is aware of the Stanford/Wise-Anderson Protocol and has a patient that swares by it. I still plan to see the PT and I do my exercises every day.
I have read HIP and I do my best to relax my muscles during the day. I am consious of my pelvic muscles after several biofeedback sessions. I figure hitting the problem at a different angle along with the PT sessions will improve my chances of defeating this problem.

Thanks.

[scotsman]

You really need to get some internal triggerpoint work done as well - that's where 90% of mine are.

Richard.

[CppsDad]

I think it's best to tackle this full force, head on, with nothing left out. Why prolong your recovery and extend your symptoms? Change your diet. Get some INTERNAL work done to stretch out your pelvic floor and repair those trigger points, and keep doing the relaxation stuff you are already doing. But until you've done some internal work, you can't be sure that your strategies haven't been helpful. The pelvic floor is full of muscles in all directions, and ANY of them can be causing you problems. And be careful of strenthening excercises. Dr. Wise warns against Kegels, for instance, as they tend to make the muscles more taut instead of less relaxed. You want to make sure that you aren't irritating muscles that aren't ready for strengthening.

[boudreaux]

I just want to back up what CppsDad is saying about not doing any strengthening stuff, including crunches or kegels, etc. No muscles will strengthen until the trigger points are eradicated. In fact, Tim Sawyer, Dr. Wise's head PT, told me that in his experience that once a trigger point is released from a muscle, that muscle is just as strong as it was before. The key in male pelvic pain is creating long, limber muscles, which are naturally strong enough for normal activities and most importantly, pain-free.

Using Claire Davies book about self treating trigger points, I found more trigger points than the therapist even found externally. So I went to the one uro where I live that knows about trigger points, and she's been doing "dry needling" of them -- abs, glutes, back muscles -- and my progress has immensely improved. Anyway, key is no strengthening, only stretching and trigger point work, whether manually by a therapist or needling by a trained doctor. In effect, by lenthening muscles you ARE making them limber and strong.

[roberth]

I changed my diet and have only noticed a little bit of improvement. I was hoping it would be the magic bullet but I will certainly stick by it. If anything my breakfast it more nutritious now.
Because of the advice given in this thread I will stop doing kegels and inform my PT why doing kegels could be exacerabating the problem. I will continue streching and trigger point therapy.
After over two years I have seen a slight improvement compared to my symptoms at the beginning. I am hoping that this is not due to my threshold of pain increasing.

[CppsDad]

Don't be discouraged Roberth. Like I said a few weeks ago, there may be a combination of things to do that will help you. I'm sure the PT you are doing is being helpful, but it may just not going far enough. The fact that you had trigger points in your perineum, and the fact that it seems to help, even for a limited time, is encouraging. Just as is the dietary change since you reported a small improvement as well. Keep doing all these things and eventually you will start to see some results. But most importantly, get some internal work done. Some of the internal trigger points are critical to your recovery. Lastly, since your were doing Kegels and your pain kept coming back, that may hint at the fact that you do have trigger points internally since that's what the Kegels work on.

Mike

[NoMoPain]

I agree with all the other replies here in that you should get internal work on the pelvic floor. I can't imagine not getting the internal work done and getting any better. Man some of those trigger points and restrictions just will not go away without manual stretching and loosening of the tissue. My PT says that some of my tissue feels like hard clay but feels like softer clay after the stretching. Based on how much better I feel after the PT it seems like her analogy is a good one.

I know I sound like a cheesy infomercial for the Stanford/Wise-Anderson Protocol but everyone with Pelvic pain should look into it.

[easytiger]

Roberth,

Cutting out all gluten has changed my life dramatically. Pain is down to 5% when it was at 75%. One thing I have noticed is that you can't cheat, you must only have things that you know are gluten free. No more sauces, gravy, malt products (malt vinegar, corn flakes etc), the list goes on.

I found that three weeks of a strict gluten free diet and the pain reduced dramatically. Cutting out harsh liquids such as coffee, coke etc was also needed.

Once my pain is reduced, I found that eating gluten would make the pain return three days later.

When the diet modification worked it gave me all the incentive needed to keep to it.

I would say give it a proper go and see. If nothing else happens you will probably lose a little weight which most people are ok with!

[webslave]

Easytiger, you confirm my findings. Once again, gluten is a nerve poison to some people.

[DavidinLA]

Easytiger, you confirm my findings. Once again, gluten is a nerve poison to some people.

Webslave,

Do you avoid all foods that contain gluten? Is it possible to have a healthy diet if you have no intake of wheat? It's very frustating when I see all the foods to avoid that I always thought of as "healthy".

[Viking]

Question regarding gluten:

Would it be easy to tell if gluten was causing the pain ? When I eat gluten I can`t really notice any more pain. Yet, when I stay away from gluten for a while I can`t say that I have less pain. The longest I have avoided gluten is probably one week. Would you have to avoid gluten for several weeks to notice an improvement ?

Thanks for any feedback!

[webslave]

David, gluten and wheat are absolutely unnecessary to a healthy diet. Mankind has only eaten wheat for 10,000 years roughly, and we've been on this planet for millions of years in one form or another. We never ate grasses as hunter-gatherers.

Viking, unless you find that wheat gives you distinct symptoms, such as fatigued and/or diarrhoea, it's not worth avoiding it.