may stanford clinic

[we.the.hulk]

anyone heading to the may clinic ?

[Sherradin]

Good luck you are doing the course early and that will help things a lot. I waited too long. I wish someone had told me about it 5 years ago.

[we.the.hulk]

Thanks Sherradin! Happy mothers day! Finally had my pain recreated from internal tp's (burning, tip of penis and urethra pain). Classic according to hitp. This pretty much convinced me. Dr. Wise said I was classic, but I'd convinced myself I had IC even though I have no food triggers even coffee. Figure a trip to Santa Rosa is an investment in the rest of my life, as even if I get back to symptom free (which I will!) , this condition will require lifelong management / commitment. Might as well have the tools to do it. I'd be lost without this board (webslave!) and people like you. Big thank you to everyone on here.

[Sherradin]

Good news that the pain was recreated. Thing now is just keep at the routine it takes time. Keep up the meditation. That is the cheapest thing you can do that helps so much over time ... its cumulative ... seems to undo all that has gone on before for so long.

[Burner2k]

Sherradin,
Wanted to ask you a couple of questions.

1. I see that you were diagnosed with IC one-time and possibly had pressure in the groin or suprapubic region? I am sort of having the same thing recently...want to know how you handled it? Like any meds to ease the pressure? I dont know if Elmiron is available in Australia or if you had to use a different one.

2. Have you found a PT who does internal TrP release in Australia? I understand you attended Dr. Wise's clinic and possibly you might be doing it yourself! I probably will be in the same situation once I return to India and suggestions on how you managed will be helpful.

Thanks in advance...
-B

[Sherradin]

Hi Burner...good name describes my symptoms with too much sitting now.

I didn't try Elmiron because when my bladder was filled during cystoscopy they found 'the healthiest bladder they had ever seen' which made the diagnosis neurological. Which is why I get pain relief from Elavil and Lyrica and Endone.

I do the internal and get professional here to do the external as I can't do my adductors and psoas the way she can it is amazing. I think if you go to the clinic you will feel confident enough to do your own internal. a lot of it is feeling your way and seeing what works for you with the wand. They suggested that I used the want once every three days but I find if I use the wand rectally each night after sitting all day and a hot bath I can sometimes halt the pain. So I do the whole thing..bath, stretches, skin rolling and meditation. Its a big ask but it begins to replace reaching for drugs with me.

My pain started 5 years ago as a burning urethra..aggravated by food..then it became bladder pain. All this is so typical of IC...but it seems to me it is a progression of pelvic dysfunction..

The best thing I did is stop reading websites...except this one now or helpfull ones...ie healthy diet etc ask walt stoll.com that promotes meditation....and really get into the relaxation..set a routine and stick to it, chart it so you can see what works but only let yourself spend a small amount of time on the recording or that becomes all part of the obsessiveness of it....its the anxiety now I recognise that I felt I never had ..I managed it through being so A type into a tidy perfect house etc...when I get a twinge I try to short circuit the catastrophic thinking saying i.e." I have had twinges before and I manage, I am managing better all the time etc" NOT "oh god its back what's going to happen how will I cope with the pain etc' Have you read Jon Kabbit Zinn Full Catastrophe Living..the chapters on pain are really helpful..just change back for pelvis..hope that helps...p.s have you got ulceration of the bladder? if not I would not take Elmiron it is another drug that has a whole lot of side-effects..

[Burner2k]

Sherridan,
Thanks for responding...really appreciate that. I hope to have a complete Urological work up done once I reach India including cystoscopy with hydro. I don't think food really affects me but it is hard to tell. I do not plan to trying out IC diet till I reach home Elimron is not cleared in India so as of now I don't know how IC is treated there...that is one of my concern.

About Internal...I guess I have to wait a while. I had my first internal evaluation today and she couldn't find any Trigger Points. I was hoping some of my sensations would be recreated. Butt so sore down there...don't know how you can do this every night May be I'll attend Wise-Anderson Protocol clinic some time later this year when I settle down there..sure Tim can find 'em all. In the meantime I guess Yoga, relaxation & if required meds should come to my rescue. I am sure I can find PTs who do external TrP in India...found a couple of them in my city.

[webslave]

Burner, a lot of pain and discomfort after an intrarectal massage or examination is a good indicator that trigger points are present. TrPs feel bruised when you manipulate them. They can get activated by a cursory evaluation.

[samgg10]

Burner: I had the PT-can't-find-it issue. You have to get proactive. Look at the pelvic charts in HITP (middle of book) and figure out which muscles correspond to your symptoms. Then either bring these charts to PT or ask your PT to examine these specific muscles at your next meeting (it may help to call ahead).

It's not ideal but it works. The urinary trigger points are way up near the prostate and hard to find. Others might seem to be on 1cm but not another to someone who doesn't know where to look.

[Burner2k]

Thanks guys...I might have another 3 sessions and I will bring this up. Recently, I have this feeling of not emptying the bladder completely...its like I pee little and it seems like I have more inside...anyone who had experiences in this area could give me suggestions please?

[DMcU]

Sherradin says above that it was a neurological problem. From what I can understand, we get the sensation that we haven't entirely emptied our bladders because the nerves are aggravated when we pass urine. This aggravation can cause this feeling, I think. So in many cases the bladder is emptied but just that the aggravation of emptying it causes us to think it's not. This thread has turned out to be very hopeful, it's nice to read that!

[Sherradin]

Thats right DMcU. But now while I agree it is a neurological irritation I think it began as muscular that through compression of the nerves by contracted muscles the nerves became irritated. Sounds like chicken or the egg but its not and this is important because when you are told it is neurological and your mind is predisposed because of pain to catastrophic thinking you start thinking MS, etc..its not, its a windup triggered by the contraction of the muscles. This is easier to deal with mentally because you can fix it by loosening the muscles as I am finding out now. As I unwind everything slowly the process is reversing..its so amazing this sensation will soon pass too if you keep reminding the body how it should be not how you have made it through tension.

[mikey33]

Wow, you all bring up some great points. I too am worried now that I have IC instead because of the frequent, painful urination. I also get some pain around my bladder, but then again, as mentioned above, it could all be muscular or neuro. I'd rather that be the case. Besides, I have always eaten pretty bad, and nothing has aggravated my bladder before all of this episode!

[Burner2k]

I guess internal really helps...even though she couldn't find any TrP, just probing there seems to have hit something. Yesterday was the best day...tingling/urgency was down...was good this morning did stretches and its back. I understand this is normal (flare ups)...hopefully next session I will have a chance to know how to manage internals on my own. Can I take a crystal wand to the session...will it help? Anyone has done this before?

[Sherradin]

Take it. I did I took it to my specialist. He was very interested..had never seen one with a calibrator on it. Even if you dont get more help it educates them.