Need Some Serious Help (GARYS case)

[GARYS]

Wethehulk, Scotsman or anyone else at what point did you know things were helping? I've read through your posts and it seems like you were really struggling over the urinary side of this but then it both of you kind of just seemed to be fine. I'm really struggling with all of this! I have been following the Wise-Anderson Protocol for almost six months and I really can't tell if I'm getting anywhere. I don't know what I'm doing wrong. I stretch daily along with relaxation and external work and internal work every other day. I'm having all these bad days but I can't get to where I know I feel better from anything I'm doing. I've only had a couple very short periods that I felt a little better but for 15 years mine has waxed and waned so I don't know if those short times were just part of that. If there was just at some point I knew it was working I would settle down and be fine and just work through it. I don't know what else to do. Webslave, is there anyway I can get a contact for Scotsman? I'm at a loss and its really frustrating me!!! I did try to do some work last night in the abductors, have some sore spots nothing referring but I read these can perpetuate internal tps. More or less just needed to vent. This morning was bad.
Thanks
Gary

[elitynski]

Garys - I was reading over your posts and I totally feel for you. I hear a lot of anxiety and fear - which I think is totally normal, especially since you've been dealing with this condition over a long period of time. Remember that no two people are alike and you need to identify what's wrong and what ways you're going to try to fix it. If internal work isn't working- then you need to re-evaluate if this is the best protocol for you. Also are there other things that you can do?

For instance - I've engaged a top notch urologist who is in touch with IC / PFD / and CPPS. I am not looking for drugs, but I'm doing two things: 1) He and I are going to work on treating OAB since the urinary symptoms are part of my issue and 2) since I have PFD, I'm going to see a PT who specializes in myofascial trigger point massage.

Then I need to do the following:
1) Make sure I take my meds every day - I'm suffering from REALLY low testosterone, non-existent Vitamin D and also a bladder that is overactive. I will keep working with these specialists to make sure that the meds are working properly - if not, then I'll ask to try something else. For the OAB we're starting with Vesicare, but if that doesn't work we'll try another med or if need be - Botox, etc.

2) I need to take care of myself - I'm using Amy Stein's book HEAL PELVIC PAIN to help with stretches and strengthening. I need to get down to a proper weight - I've lost 45 lbs but I have a ways to go. It's POSSIBLE (not a given) that the excess weight is contributing to my OAB. I need to eat a proper diet - whole foods - many fruits and veggies with a portion of soluble fiber to help with movement. I need to get proper rest, proper exercise - cardio, and make sure that i'm doing some mind / body work - breathing, etc. Hot baths would be helpful and I need to make sure that I don't let this ruin my life - even though I've spent hours ruminating, depressed, crying....etc. I'm still here and still fighting.

Also, Remember that you had good days....if you had them before you can have them again! This is not hopeless and it takes time. Maybe you need to regroup and make sure you are doing everything you can.

Please keep us posted on how you're doing. I'm pulling for you!!

[we.the.hulk]

Hi garys

Its hard to say exactly when things started getting better. I just kept / keep doing the meditation, stretching and the wand everyday. I think the key was when I de-emphasized the importance of it. Stopped dwelling on it. And, believe me, I know this is not easy. Especially when you are in pain, or feel like you need to pee all the time. Its just so goddam consuming.

All of a sudden this "condition" had usurped my life. And realizing that, yes, despite my feelings to the contrary, I had a real anxiety problem that I needed to treat. I am/was obsessive and over reactive. I didn't know this when things went wrong in late 2009. And, not understanding my mental state really was a hindrance in the beginning. I spent every waking hour for months looking for a cure. You know how it goes. All over the internet day and night. Oh I need this, I need to do more of this.....freaking myself out at every turn. This all turned into one long panic attack. Finally, I felt like I needed to "talk" with someone. A psychologist. She helped me understand my "behavioural" issues. I thought I was this mellow dude. She helped me see the light.

Anyway, going to the Wise-Anderson Protocol clinic was helpful for a number of reasons, but mostly to meet others in person that were suffering like me. And to realize that this wasn't all in my head. It was legit. The wand has been amazing. If nothing else it gives you the feeling of "doing" something for this condition.

Do you have the wand? I don't know if you went to the clinic.

On the drug front I take Elavil, hydroxyzine, and Xanax everyday. Low dose.

Are you on any medication?

I wouldn't be afraid to do internal everyday. I still do. After 2 years.

Anyway, I'd be happy to speak privately or whatever if you have specific questions. Definitely read boudreaux's posts. Sounds like you are doing the right things. Just keep it up. If you let me / or us, the forum, know exactly the protocol, drugs, etc you are on perhaps we can key in on what might be an "issue" you are missing.

Wth

[GARYS]

Thanks for the response from you both!! I won't bore anyone who reads this with every detail (my posts through the years covers all of it) but I did finally attend the Wise-Anderson Protocol clinic this last September. Tim found the sides if my prostate tender/tight/tps and a couple on my abdomen. I was deathly scared to attend the clinic out of fear he wouldn't find anything and that when I saw Rhonda Kotarinos in Chicago I flared up so bad there would have been no I could have been treated daily at the clinic. Strange thing is that Rhonda didn't find anything. Even she was Surprised, from my description over the phone she thought she would know exactly where to check. So I'm not sure why I had such a flare after seeing her. The mental side for me is horrible as anyone could see from previous posts (although I'm not mentally disturbed) other than from this condition trying to make me crazy!!! Lol. I've had all the regular drugs over the years but none made a difference. I am only taking valium right now as needed. When I returned from the clinic I tried two different CBT therapists who were a complete waste of money and time. They both just couldn't understand that I have pain related to using the bathroom. I don't think we ever even got into the CBT part of it, the one was so old he needed to retire ten years ago and the other was showing me studies of really high doses of omega-3 really helped with pain so I tried it for awhile along with his other suggestions. I then went on trying to find pts for pelvic pain with no luck. I will just do what I was taught at the clinic on my own. I did just order Full Catastrophe Living so I will try reading and applying that to my regimen. There's no doubt this thing has screwed up my mind and there seems I have no way of controlling it. I really do believe when I start seeing benefits from treatment it will get back to normal. At least it did when this problem went about 85% away in its own for about five years but looking back I'm positive major stress brought it back. (I don't want to scare anyone who's feeling better that it will come back) so if your reading this be watchful of the stress!!! We the Hulk, your story caught my attention because of the similarities (as well as the similarities of several others) but mine al

[GARYS]

My phone wouldn't let me finish or edit the previous post but we the hulk could you shoot me an email garscheel at aol dot com. I just wanted to see if you noticed some things during treatment.
Thanks
Gary

[GARYS]

Time for another question. When treating internally to the sides of the prostate which seems to be my biggest problem area it recreates the urethral symptoms I have. That being said (and I just got done searching older posts so I wouldn't have to ask another dumb question) I used to feel worse after a bowel movement but now I've had a couple times where I actually feel better for a little while, but now when there is stool up there I feel worse. Is this the stool pressing on my problem area most likely? It wouldn't be a big deal if I could just go to the bathroom and get it out. The problem is that if I don't wait until I know for sure I have to go and I push in any way it makes me feel worse (make sense) . This has been going on for about the last month. I've read about others feeling better before a bowel movement but couldn't find anything similar to this. Sounds minor but its very frustrating. Is it most likely the stool pressing on this area and it just needs to be stretched out more and this will stop. Anyone else had anything similar?
Thanks

[webslave]

Gary, it could be something as simple as the fact that when the rectum is full, the nerves in the area are stimulated, signalling to the brain that it is time to evacuate the bowel. Since we know that these nerves are all interconnected with the ones causing symptoms, it is likely that the nerve activity itself is enough to goose symptoms into life.

[GARYS]

Thanks Webslave!! Do you think this is something that will settle down further into treatment?
Thanks

[webslave]

Yes, it has for most of us. Some people seem to have much more trouble controlling the condition than other people, and I would explain that by genetic differences that lead to varying levels of compliance with the protocol, as well as different levels of psychological hypervigilance. I'm sure we could tease out other factors as well. The men who have the most trouble getting better tend to become our most frequent posters and longest serving members, which may give an unfortunately (and unnecessarily) gloomy picture to newcomers.

[GARYS]

Been at the wise anderson protocol for awhile now and seem to be making slow progress. I have a question, I always lightly rub my perineum after urination to get everything out but lately I've noticed when doing this if I press on it a little bit it causes some discomfort. I don't have perineum pain but I'm wondering if this is an area I should add to my treatment since when I do press in I do feel a partial recreation of my urinary/urethral discomfort. Sometimes it feels a little harder so I didn't know if this is just normal.
thanks

[we.the.hulk]

Garys, been away for awhile. I stop sitting on the toilet 2 years ago. Now I squat on the toilet. I realize this isn't always possible for some. But if at home and you can, you should. Now... What I've found extremely helpful and posted several times about. Once you defecate, and are "squatting" on the toilet, grab one or both your buttocks and really pull outward and hold. Do one side, both sides. Whatever. Just feel the stretch. It may seem awkward at first, but stick at it. This had been really helpful for me. I think because sometimes after a BM the colon is still moving a little or spasming or whatever. I don't know the physiology. All I know is that holding a stretch after a BM has been been helpful to relieve post BM weirdness. Not necessarily pain, but that feeling that something isn't quite right. Also, be mindful of how much "straining" you do. You shouldn't have to strain at all. Minimal at most. This is overlooked many times. A fiber supplement will help with this. And yes, this has symptom is gone for me. It takes time and dedication to a protocol. But its really no big deal. Although it seems like one right now.

[GARYS]

Thanks wth. I have a question, after reading some of your posts I have done the hooking the finger inside the rectum and pressing/pulling and also the butt cheek stretch (for the last 7 month's I've just been using the wand up near the prostate without much change in symptoms) but after doing these stretches I have sort of a raw/flarey type of feeling going on. I don't know if this is a good thing or if I just did it a little too hard. Do you remember if this happened to you? Also if anyone could answer this, in all my years with this condition I never felt like my bladder was involved but since working on myself I find that a lot of times pressing on my bladder it feels full even though its not, like its sensitive to the touch but has nothing to do with food or drinks and its like that at times and not others. Confusing!! The urethral burning feels better from treatment but then this bladder feeling hits me. Sometimes it feels lime your making progress and then when things get bad again its so easy to question all your doing. Just wish I would have started treating myself early on instead of waiting so long!!!

[we.the.hulk]

Gary,

You've obviously been dealing with this longer than I have. At the clinic, both Tim and Wise, stated that you would flare from treatment in the beginning and not to be deterred from this. Oddly, like you, in the beginning I felt like my bladder was not involved.

Urethral burning and tip of the penis pain were the main offenders. Later, the bladder seemed to become involved (this is the worst, by far). Mostly, burning bladder and the feeling of a "full bladder" when it clearly wasn't. I can't even speculate as to the "why" of this progression. Well, I mean, webslave has pretty much done a dissertation on it (neuronal windup etc). ....it's just so weird. I would say this though. I use a pretty good amount of pressure with the wand (I stopped using the "meter", but I was going well over 50), and also use strong pressure on the "finger hook" pull. And never had one problem. And, I know this "rawness" you speak of. I would suggest that maybe you are moving things around a bit and that it is good !!! ???. My guess would be you are not using enough pressure to hurt yourself. From what Tim Sawyer told me and from I've read on here, mostly from webslave, the vulnerable area is directly on your prostate. If you really ram yourself here you run the risk of damaging the prostatic urethra. Again, if you've been to the clinic, I know you are not doing this. I use my force away from the prostate, at say 10 and 14 on the pelvic clock.

Yeah, this whole mess is "confusing" as you say. Ridiculous really.

I made the decision to "buy" into the muscular theory and use the wand everyday (been 2 years this month---everyday with the wand). I think you just keep going, be gentle with yourself, and don't spend too long internally (I'm 15 minutes and done). Focus on relaxing the pelvis when you can.

I'll say this....after 2 years I feel pretty close to done with this whole thing. Its brutal psychologically, so you must, must find some system of dealing with it all. I found meditation. You'll find whatever you find. I think the psychological scars linger longer than the physical. Make sure you treat the anxiety. The mind is a bear.

Also, one more suggestion, I do a lot of skin rolling around the bladder (everyday--5 minutes) and the cobra or upward facing dog many times during the day (love the cobra...great stretch for everything around the bladder. Super if you sit all day.

All the best sir. Hope things are progressing well.

[GARYS]

Thanks for the response WTH!! I think I am going to increase the pressure I use. If I think back to the way I felt before the clinic I do know I was feeling worse than I am now, so that is a good sign!! How long did it take for you to know things were getting better with your treatment? I've read some of your posts and see that you went to clinic pretty early on (smart move one I wish I would have done) !!! The weird thing about my internal treatments is that for about 8 months of internal work I can reproduce something similar to my symptoms at a pressure of about a 8 and it passes quickly and I go up to around 30 and at this point I don't feel much of anything symptom wise. It doesn't seem to be lengthening. I will stick with it for as long as it takes. The toll it takes on your mental health is terrible. I think my first time around I had more pain but dealt with it better. Strange!
Thanks again

[neue01]

Hey garys. How are things going with the dorsal part of the rectal sphincter. This seems to be my last big problem area and has really been a big issue all along. I've sort of avoided working it too much in the past because it flares things up so much when I mess with it. I've decided to dive in and only focus on this spot for the next while. It seems to be my left side in particular. What methods are you using besides the "finger hook"? I struggle with the fact that these muscles move so much it's hard to keep consistent pressure in one place. It always starts a bowel movement motion pushing my finger out and onto surrounding muscles. Do other people experience this too?