Newbie to this Forum--My experience and would welcome help

[Baltimark]

I am new to the forum, and am delighted to learn that there are others who have to deal with this problem. I have not seen my exact symptoms listed in here, but I have not read every post.

I have had symptoms of prostatitis/prostadynia for almost 20 years, on and off. Sometimes the symptoms were long lasting (a month+), other times the symptoms subsided in a week. I have gone long periods of time with virtually no symptoms, only to have symptoms slam me without warning.

The first symptoms may have been the result of a real prostatitis infection, treated first with sulfa (learned I was allergic to that!) and later with Doxycycline. However, as symptoms went and then returned, my very competent and understanding urologist began to explain to me that while my symptoms certain were real, there was nothing wrong with my prostate, and no bacteria or infection in the fluid. Over time, (years), I came to understand that the symptoms were not being caused by some medical condition.

He explained that for whatever reason, muscular spasms that I could not directly control were pressing on or squeezing my prostate area, causing symptoms of "fullness" (often referred to in this forum as "golf ball up the ass") that made me feel like I need to have a bowel movement, even when I did not. I never had any problem with urination, or pain from that. All of the pain/discomfort came from the actual prostate area, and felt like it was being squeezed, making it very uncomfortable for me. (That is an understatement.)

I was finally directed to try psychotherapy, to the extent that this problem seemed to be anxiety related. This turned out to be a pretty potent diagnosis, since the symptoms tended to come on when I perceived a tense or anxious situation (in my case, long trips and other things) though there were many, many times I had serious anxiety situations with no prostadynia symptoms.

I have at various times used heavy doses of ibuprofen, and also valium (diazepam) first at 2mg per, and later 5mg per, twice or three times a day to keep the spasms at bay. This does not always work. I also use sitz baths.

Last summer, after almost 2 years without any attacks of CPPS, I was virtually felled while on a trip to Colorado, which I ended up cutting short after 5 days (instead of the 2 weeks planned). I had a terrible summer, with symptoms that would just not quit. But I kept at the diazepam and therapy, and soon enough the symptoms quit. But now they are back (and guess what, I am supposed to go Colorado (that same trip) next month. I can certainly see the pattern.

Sometimes a good bowel movement helps soothe the symptoms, sometimes not. It is more a big time aggravation than anything else. My urologist (who I hadn't seen since 1997 but saw last summer after the big attack) told me my prostate was fine (physically) and the symptoms he referred to as "your thing" and something I would have to learn to deal with, but that I was not alone.

I don't much care for using a lot of diazepam, but sometimes I have not alternative. I was considering acupuncture. I have come to learn that my symptoms, while very real and very uncomfortable, are not indicated by any medical condition, nor are they life threatening, cancerous, etc. I have to deal with them, and wonder if any of you have any suggestions, similar symptoms or circumstances, etc. I will be glad to post more details at a later time. Thanks! Feel free to contact me with private message.

[CppsDad]

Hey there. Glad you finally found this site after 20 years. Ouch. You are NOT alone. And in fact, after reading your post, I think there are MANY cases I've seen here similar to yours. Just the on-again, off-again nature of your condition is one of the most common symptom pain patterns on this board. Most people experience the waxing and waning, daily, weekly, monthly, or longer. Secondly, the fact that your condition responds to stress and anxiety is another major hallmark of chronic prostatitis / chronic pelvic pain syndrome and pelvic myoneuropathy (search for stress, tension, relaxation, etc... on this board and you'll get hundreds of hits).

Some positives in your case:

1. Your pain seems to be mostly local to the prostate area (you don't mention testicular pain, abdominal pain, and other symptoms). This could mean you have a very finite set of muscles you need to work on.

2. You already know, and BELIEVE, that your pain isn't being caused by the prostate (this is SO HARD for new sufferers to believe, and they subject themselves to prostate injections, re-sections, and more). It's important for you to have faith in your convictions as to where the pain is coming from, and you already have that.

3. You already know, and BELIEVE, that the pain is not being caused by infections, cancer, and other medical problems, and is not life threatening. Once again, these things are major barriers to a lot of sufferers who embark on the treatments recommended on this board.

4. Anxiety makes your condition worse. I'd be more worried if it didn't. But in this case, we as a group know that anxiety is tied to muscle tension, which constricts on the prostate, and sets off the pain-cycle, nerve irritation, releases bad chemicals in the body, and causes mast cells, trigger points, and all of our favorite symptoms. Anxiety and tension are treatable.

5. You're here. Be glad you are. I think this board has the answers you need.

Read lots of posts, search for the things mentioned above, and start treatment as soon as possible. It doesn't hurt to try, and you can do most or all of it for free.

You don't provide enough detail for me to diagnose your case (nor am I a doctor and you don't know me), but it sounds like your case may respond well to physical therapy, pelvic floor massage, and pelvic floor relaxation. Just a word of caution - generally the longer the case has gone on, the longer it takes to recover. IF you do, in fact, suffer from trigger points and tense muscles in the prostate region, they have been stuck that way for 20 years. It might be easy for muscles to forget a golf swing, but they seem to remember tension quite well, more like riding a bike. You'll have to pull those muscles apart and re-create blood flow to rehabilitate them, and then you'll have to do that over and over and over, and probably to some extent for the rest of your life to keep them from returning to the place they've been for 20 years. Your muscles have probably changed physically, and are pre-disposed to being in the positions that cause pain for you. It will NOT be easy to get them back to a healthy state, but you CAN do it. It will also be uncomfortable, and probably painful, as your muscles just won't want to be treated after this much time.

As a word of encouragement... in general, the golf ball feeling and the tightness on the rectum sensation is one of the easiest to dissipate through physical therapy. That may be your saving grace. If your pain is, in fact, located in the levator ani and surrounding muscles, you are in good shape and a prime candidate for recovery.

Physical therapy will help your stretch out those muscles. Relaxation of the pelvic floor will help keep them stretched, and allow you to learn how to keep them from tensing. Plus, recognition of the role anxiety plays in your condition should help you to keep your anxiety at bay, or to at least help control it's affect on your pelvic floor muscles.

Do a search for Stanford/Wise-Anderson Protocol. It is the primary protocol advocated here, and is basically a set of non-medical treatments that have great benefit for most of the people here. Plus, read a lot as stated above.

Mike

[Baltimark]

Hi Mike
Thank you for your lengthy and informative reply.

It took me a while to accept that none of this was a real physical problem (in contrast to a created one) but a good urologist with a lot of experience and the fact that my prostate is in excellent shape led to me accept this (and just as well.)

I am not at all familiar with any physical therapy techniques you mention. At some point in the past, I went to a physical therapist recommended by the urologist, who suggested certain muscle relaxing techniques. These consisted of squeezing my buttock muscles for 10 seconds, relaxing for 10 seconds, and doing the sequence for several minutes. I never really understood the point of this, and tended to find it annoying after a few 10 second bouts. Perhaps I was a bit hasty.

Could you be more specific about what type of physical therapy I should use? Should I just search the postings for Stanford/Wise-Anderson Protocol or go see a physical therapist (how embarrassing would that be!?!) What about that Doctor's book that I have seen mentioned (forgot the name).

Please advise. Thanks, Mark (Baltimark)

[CppsDad]

Most suprising from your story is how forward-thinking your urologist was in this situation. He probably diagnosed you almost perfectly. How long ago was this? His advice is what 90% of the urologists out there should be giving, yet yours gave it to you long before some of the theories about pelvic myoneuropathy surfaced. You probably had better odds of finding a urologist that would want to remove part of your prostate surgically than you did to find one that understood how the muscles in the region could be irritating the prostate. Anyway, I digress...

I am not at all familiar with any physical therapy techniques you mention.

First off, read the page on this site located here: https://ucpps.men/chronic-prostatitis-is-a-psychoneuromuscular-condition

It explains a lot.

Basically, the theories of Dr. Wise and Dr. Andersen from Stanford (authors of A Headache In The Pelvic - another must read for you), suggest that the pattern of chronically tense muscles can lead to a cycle of trigger point formation, taut, hard bands of muscle that are locked into position, choking off muscles of necessary blood supply, leading to a pattern of nerve irritation, mast cell production, further muscle irritation, hypersensitive nerves, and, for what becomes some of the first symptoms for many of us, REFERRED pain. The referred pain happens when the nerves and tissue in the area become so inflamed, that they start sending out pain signals that are too strong for one "path" of nerves to handle. Hence you may have trigger points in your pelvic floor, but you might feel it most strongly in your testicles, or the tip of your penis, or during urination. It's a very confusing set of symptoms that makes it hard for anyone to diagnose intuitively.

The therapeutic strategies include:

1. External physical therapy (treating all external muscular trigger points) on the stomach, abdomen, lower back, buttocks, groin, and perineum.

2. Internal physical therapy. Yes, embarrassing. But VITAL to your recovery, especially given the symptoms you describe. Your pelvic floor needs to be stretched out, and the trigger points need to be eliminated (that usually involves pressing on them until they "release", and repeating over a long period of time). If you have a partner (wife, girlfriend, or other), THEY can learn to do this for you. Best to use a PT experienced in the field first, however, so you can learn what things should feel like. You can also do internal work on yourself, using your own hands or using implements designed for the purpose (I'll hold off on this discussion unless you need it).

3. Stretching. There are many many stretches to help loosen and relax the muscles in the pelvic floor. These stretches are similar to yoga positions (many of them are the same), and they help restore muscle tone, blood flow, and improve your overall sense of well-being. Flexibility is important. You need to your body to be limber and a well-oiled machine. Years of tension have probably led you to be tight and brittle, with shortened muscles that ALL contribute to your symptoms. Believe it or not, but your upper hamstrings pull on the gluts, which pull on the pelvic floor, which pull on the lower back, etc... It's all connected, and every muscle your loosen helps your cause.

4. Relaxation. You have to learn to stop tensing the pelvic floor. This also helps lessen anxiety and tension.

I'll save you some time here. ALL of the above mentioned steps are important. All of them. Read long enough on this site, and you'll see how many "epiphonies"(sp?) people have along these lines, each person realizing how they ignored one of the components and how it hurt their recovery. They are ALL important, you have to work on all parts to make it work.

Basically, you're going to stretch daily, once or twice a day (I do it once before bed, twice if I have time and am at home), do external physical work a few times a week, relax every day (and throughout the day), and do internal therapy once a week, or more often depending on how much you need it and whether you are paying someone to do it or having a partner help out.

This is going to become a way of life that will leave you healthier as a result. You won't need to do it all, every day, forever. But for the short term, you'll probably need to.

Buy AHIP first, read it, and you'll set your expectations appropriately. You'll definitely hit setbacks and flare-ups as you treat this and start beating back those tight muscle bands. But eventually you'll start seeing some relief.

Mike

[Baltimark]

Thank you so much Mike for your kind and helpful responses. I hope (and welcome) any other forum members will respond to me publicly or privately with anything of help, experience, or what not.

I have looked over the Stanford protocols, and am kind of confused as to whether the Hegel exercises, which were originally suggested to me years ago, actually help or hinder the condition.

More importantly, I want to thank all of you for maintainig this forum and giving me the emotional support just reading some of your posts has given me. I appreciate now that I am not the only poor soul with this issue, and it gives me a certain strength to move ahead.

Thank you.

[rider fan]

I think the general consensus on here is that kegels hurt more than help. We don't need to strengthen our pelvic muscles...

[CppsDad]

Kegels are good for strengthening and improving overall muscle tone (which is a good thing), but if you have trigger points in the muscles that are being strengthened, you aren't doing anything to get rid of them.

I think (someone else might want to correct me if I am wrong), that the goal is to 1) break down the trigger points, 2) improve blood flow, and then 3) once the muscles have returned to a normal consistency, strengthen them as needed. So Kegels can be used once your muscles are ready for it, but your muscles probably aren't there yet. So if you tried Kegels, you'd probably see little benefit, and some people would actually experience flare-ups.

Mike