Need Some Serious Help (GARYS case)

GARYS · Post by **GARYS** » Tue Dec 05, 2006 1:14 am

I have been on this board since it started and I am so grateful for having it here to help all of us!! I read everything that is written desperately trying everything I can to find something to ease my symptoms. I'm 32 years old and have suffered since I was 21. In the beginning I tried all the uros and medications (AHIP wasn't around to save me the troubles). I spent years searching for anything to help, I did this for years until I could no longer get insurance and ran out of money to keep trying new medications. I just suffered for the next several years, praying for it to stop. It all started out one morning after urinating I got severe burning in my urethra when I finished. It would ware off after about an hour until I had to go again, it was also followed by an intense urge to try and urinate more but that just irritated things worse. I eventually developed pain in the rectum and post defecation pain in the rectum. This all seemed to get a lot better, but the burning continued (it varies in intensity) Now 10 years later I dont seem to know any more than I did with what is causing this for me, Thats where I am hoping one of you can help!!! Where or what could be causing this? I have been trying really hard lately with stretching, relaxing, TP treatment on my abdominals I have had some internal treatments (not enough) because it made the burning come on too bad after treatments that lasted weeks. I've done so many searches for this type of burning but found nothing more than urethral syndrome which really has no treatments. I take vitamins, no caffeine, no alcohol and no spicy foods. I have been trying so hard lately with the self treatments and trying to stay positive but just like tonight I got the burning real bad after a bowel movement. If I could just do something that I could tell was benefiting this symptom I could see through the fog I am in. Can some of you guys tell me what you think? I really need to see a light at the end of this tunnel to keep doing what I am doing. I just wonder if I keep missing that one thing. Thank you for any thoughts
Gary

Post by **webslave** » Tue Dec 05, 2006 1:20 am

What haven't you tried of these:

Stress management
Meditation
Gluten exclusion
Quercetin
TrP treatment
Antihistamines
Pain meds
alpha-blockers
Elavil
Benzos

GARYS · Post by **GARYS** » Tue Dec 05, 2006 1:44 am

Of this list, I have never tried antihistamines, or alpha blockers and if benzos are antidepressants I have tried many over the years. I probably didn't give the gluten diet a long enough chance. I also have a tightness in my rectum and things feel swollen when I need to have a bowel movement and after one I have to pee again minutes later. I am lost to where this burning could be stemming from (bladder, prostate ect..) I also feel a lot of times like a couple of drops of urine stay in my urethra after voiding. I do have a very stressfull small construction business. I used to take the max dose of neurontin in the past and Elavil but I dont remember how much. After urinating I have to stay very still for a few minutes because the slightest movement feels like it brings urine through my urethra. I dont want to scare anyone with this post, I lived a long time with this before I tried anything other than medications, mainly abx.

Post by **webslave** » Tue Dec 05, 2006 3:40 am

GARYS wrote:Of this list, I have never tried antihistamines, or alpha blockers and if benzos are antidepressants I have tried many over the years.

No, benzodiazepines are not anti-depressants, they are anxiety reducing drugs, useful in the short term, especially for someone like you who suffers from stress. Anyone who has carefully read this forum would both know that fact, and probably have tried to use them. So when you say : "I read everything that is written desperately trying everything I can to find something to ease my symptoms", that's not totally true, is it?

I probably didn't give the gluten diet a long enough chance.

How long did you give it?

By the way, have you tied together two things in your head:

the non-improvement of your symptoms
the recent difficulties in the construction market?

Coincidence?

GS · Post by GS » Tue Dec 05, 2006 3:41 am

you should go to Dr. Wise's Stanford clinic and follow it up with regular PT and daily paradoxical relaxation.

texas2006 · Post by **texas2006** » Tue Dec 05, 2006 4:15 am

Garys, I feel for you. I think that you might not see a fast enough benefit in doing things like the SP. That is one of my biggest problems. The fellas I know who had significant benefit followed it religiously, while reducing stress and working on cognitive behavior therapy.

I am coming to realize that this effort has to be "my free time" for the forseeable future. Dr. Wise said to give the relaxation a good hour a day for several months, while most guys try to do it twice a day. The PT and stretches are important also, as are hot bath/heat for some relief. Are you willing to come home from work, eat a meal and spend the rest of the evening focusing on those tasks...everynight...for possibly months without noticable benefit?

All told, it would mean/does mean giving up some things you enjoy. Do I have the time to do this? No, I don't. Unless I give up tv shows I like, and reading the internet (like this board) , going out to bars/clubs/movies. The time is there, you just have to accept the work as important enough. It's a dilemma, to be sure, that you might say, "So along with this pain/discomfort/misery, I am not gonna have time for myself?" This IS for yourself. Nothing is more for yourself, than laying in bed, with maybe a hot pack on an area of pain, while listening to the relaxation tapes.

Yes, the toll on life is tough, I fucking hate it too. But don't just piddle at the SP process, and expect it to work miracles...I did that for months and obviously that won't really get me better.

I do feel for you, I promise, as the toll on my life and marriage and parenting has been high with chronic prostatitis / chronic pelvic pain syndrome and the hurt it causes me. But I know the job I have ahead...I just have to somehow have the proverbial leap of faith, and get to work, dammit!

Best regards,
Ryan
Fort Worth

PS. Webslave has answered your points accurately, and succinctly in my humble opinion...

GARYS · Post by **GARYS** » Tue Dec 05, 2006 4:20 am

OK, I do read everything, just didn't know it was a benzo for some reason. I have been on valium for the past couple years. I dont take them everyday because I dont notice anything. Right now I take 10mgs at a time but nothing, I also take ultracet. I know you have said that like 1-2 mgs kind of knocks you out but it has no noticable effect on me for some reason. I have also tried Xanax and it was pretty much the same. The construction that I am in stays the same regardless of the market. What I am really after here is, where would this burning be coming from. It happens after urinating, but I have felt a weird feeling towards the end of urinating, hard to explain like it splits off and takes a different course in there but still comes out the same. Sometimes it can take up to a minute to start burning and I always feel a really strong urge to keep going. I know it all comes out, so its just a feeling. I have never been given a straight forward answer to this question. I know a lot of you know more about these things than any doctor I have seen and I know there is no way to tell for sure where or why this feeling would be happening, I would just like some good guesses. It also seems I have a lot of urethral irritation and hypersensativity (like getting in the shower, I actually have to cover myself and slowly get used to the water before I can let it shoot directly on it. Does anyone else have this same symptom? Thanks

texas2006 · Post by **texas2006** » Tue Dec 05, 2006 4:28 am

That's a lot of meds, Garys, but you do what you gotta do.

Have you ever talked to a therapist? I know, I know, I NEVER thought I would need to. I can suggest a great one in CA, named Kathy Harris. She does The Work, the Byron Katie stuff.

texas2006 · Post by **texas2006** » Tue Dec 05, 2006 4:30 am

Have you read AHIP? Much of what you are looking for is discussed in there.

Post by **webslave** » Tue Dec 05, 2006 4:51 am

Have you had a cystoscopy?

GARYS · Post by **GARYS** » Tue Dec 05, 2006 5:13 am

Yes, I have had 2 cystoscopies. It has been a long time now, but the first one I had was done by a uro who said I was too young to have a problem, and the second one was done while I was out and he also did a bladder distension w/ a biopsy. Everything has always come back clear. I have also had x rays and a MRI. There was one time where one uro was going to do a uroflow test but his nurse couldnt get the catheter in, she tried about four times and then the uro came in and he got it in but as soon as he left it popped out. I told him I was done (way too painful since that is where my pain is). I have been through it all. I can seem to make things worse with some stretches sometimes but its never followed with any relief. I still do them. I deffinetly need some help with my head. I work a lot just to keep my mind occupied because it has me obsessed, its on my mind non stop. It scares the hell out of me everytime I have to go to the bathroom (unless I've had a few days where its not so bad. If I could just find something that could make a difference in a good way atleast I would know where it was coming from and know I was on the right track. The wierdest part about it is that I have no idea every time I go to the bathroom if its going to be mild discomfort, bad or horrible regardless of stress, diet or anything. It makes you crazy when your trying everything to help yourself and think if I push through the setbacks things will get better and then it hits you hard again.

Post by **webslave** » Tue Dec 05, 2006 5:22 am

Just as a matter of interest, would you say you are a tense or anxious type of person, ignoring the sort of work you do? And does that description apply to either of your parents or any of your siblings as well?

GARYS · Post by **GARYS** » Tue Dec 05, 2006 5:50 am

Yes I am both tense and anxious, but I dont think I was before all of this. I do have family members who are both also. Xanax helps my father. I have never posted this before (not for any reason, but thought it may have something to do w/ my problem or maybe not) Theres actually a few things. But before I get into those I should say that I would get this burning on and off for a couple years before it came on and didn't stop. I would urinate and get this burning about once every few months but it would just be once and ware off and not come back w/ no other symptoms. About a year before this first happened I had a girlfriend who would perform oral sex but would always stop before I was finished so I would just be left this way (should have finished it myself but didn't. This happened for a couple months but not all the time. Thats one thing I can think of, the other is that a few months before it came on full blast I had a horrible case of bronchitis that lasted about 4 months. I mean severe, I coughed non stop for months to the point where I would gag and throw up from caughing so hard and long. I know that had to have been hell on my muscles.

Post by **webslave** » Tue Dec 05, 2006 2:31 pm

A bad case of bronchitis means you would have tensed those pelvic muscles severely, frequently, pushing your already teetering and grumbling pelvis into full myoneuropathy.

scoobysnacks · Post by **scoobysnacks** » Tue Dec 05, 2006 3:35 pm

Garys,

I feel for you man, about three years ago I felt much like you do now.

The pain in the rectum with urinary tract pain is what I suffered from. I think that feeling you get where the urine feels like its going down a split path is your urinary sphincter sputtering inside as you pee, but thats merely a guess.

Anyways, my rectum pain was horrible three years ago. My rectum was so tight had you shoved coal up my ass I could have produced a diamond. Since I never focused on my ass, and I'm sure none of did either, I never really knew what it should feel like, but now that I have worked diligently to get my pelvic/perineum loose I can certainly look back and say I was TOO tight. When I first went to PT it hurt horribly to have anything pushed around in there. But, I stuck with that for 2 mos, then I quit.

Only this past year ago did I finally dedicate myself 100% to a cure. As one poster said above you need to come home and be devoted to the cure. When I get home I get a bath for 45 mins, I do deep breathing and external massage of the entire perineum. Once I get it lose I sit with it lose for whatever time I can before the water gets cold. Then I get out and do the stretches that help me. In the past this is when I would do internal work. Then I would follow up with the only relaxation I knew of. And yes this would take about 1.5 to 2 hrs, my wife is very understanding thankfully.

I still do this, but not much internal work anymore. It was painful at first, scary as the internal work caused flares, etc and so forth. But, I worked through it. I am still a bit sensitive in this area, and it burns a tiny bit when I defecate, but nothing like it used to. I just chalk this up to muscles that are still healing.

I am at a loss though why 10mg of valium wouldnt cause a cessation in symptoms if this was purely muscular. I know 2mg and a bath knocks mine to nothing for a couple hours, but I'm pretty far along in the healing process.

Does alcohol help your symptoms? If benzo and alcohol dont help I would be thinking it might not be muscular, and maybe allergy/systemic problems.

Only you know if your truly feel tight in the rectum/perineum, which it sounds like you do. If you have very bad TPs in your rectum I dont know if valium would work, there were times when I was so tight nothing but getting blacked out from alcohol would help, and we both know that takes a lot of alcohol. I would re-think a protocol that consists of two baths a day (morning/night with external massage and deep breathing) followed by internal massage in conjunction with a valium pill afterwards, then stretching, and maybe some prop H extra strength during the day for the after pain from the massage and treatment (yes you have to get an hour earlier). This protocol has worked wonders for me, but note, its taken 1 yr to see vast improvement, Id say the the first 4 mos was minimal. If you have suffered for ten years, just realize this will take time.

One final point, the fact that 2 cystos said for the most part you were normal internally does lead me to beleive this is still muscular even though valium doesnt help. You could be so contracted by now that benzos dont help. You also sound like you have quite a tolerance built up. If I took 10mg Id be on my ass; I weight 170lbs, not sure if you are double my size, but.....

Good Luck,

SS