ChgoGuy thread

[ChgoGuy]

It's crossed my mind Webslave.

I have asked if this is IC. The Urologists all seem to dance around the question. From my cystoscopies, they tell me there is no irritation. I have done Urodynamic testing, which did show some limited capacity, but nothing else was said about it as the rest of the testing went well. So what is the standard to test for certainty of IC - Potassium Chloride Sensitivity test? Why after 3 yrs, would they not want to check further for that? I always believed they haven't because they led me to believe they didn't think it was IC.

To be honest, a diagnosis of IC would be a major blow to me. I've never read anything good about it or the treatment. It seems these people suffer with very little relief and reliable treatment. That is unless I am missing something or uninformed about it. My exposure is a fraction of what others are exposed to. My only exposure would be fumes, which I know about the Kerosene/Benzene connection. But I guess that means little when it comes to exposure as everybody reacts differently to things. I do spend most of my time working in buildings, and less of it on the airfield. But again that means nothing.

[webslave]

The fact that you have hit trigger points with the wand is strongly suggestive that you have a run of the mill case of CPPS, complicated only by the urge issue, which may resolve as the other symptoms resolve. You should get professional internal massage. The Wise Anderson clinic, with their top-rate therapist on hand, would be a good option.

[eltenso]

Tim Sawyer is indeed a great physical therapist.
Now, Chgoguy, I see in your signature that you have used a TENS to help you sleep. Which device have you used? I am having a lot of sleep issues, and would like to give it a try.

[ChgoGuy]

Now, Chgoguy, I see in your signature that you have used a TENS to help you sleep. Which device have you used? I am having a lot of sleep issues, and would like to give it a try.

This is the current unit I have been using for almost 2 years. https://omronhealthcare.com/products/ma ... it-pm3032/



By the suggestion of my Physical Therapist, I also purchased this unit thru CMT. I needed a prescription from my Urologist to purchase it. It's supposed to be a better unit. Unfortunately it's been sitting in the box for almost 3 months. It's a 4 pad unit as opposed to the first one that has 2 pads. I have been holding off on the newer unit until I get back into PT in a few weeks. I would like to discuss with her what would be the best placement for all 4 pads. After 2nd thought and the purchase, I think the new unit may be more of an inconvenience to use for when I use it. https://www.cmtmedical.com/product/tens/

eltenso - It's not going to cure the problem. But this is why I use it for sleep. For me it's been a diversion of sorts. I'm a poor sleeper as it is. So when I have pain in the area of the bladder, urethra and penis, it's difficult for me to get comfortable and even attempt to fall asleep. Using the 2 pad Omron unit, I place each pad on each side of the pelvis above the penis with an inch or 2 between them. Having no hair in the area helps the pads to stick right. This unit is set up for 15min. I crank it up to a high enough level where my attention is centered on the pulses and less on the pain. I would say that 80% of the time, it helps me fall asleep. I will keep resetting it in 15min intervals until I fall asleep. Of course I wake up quite a few times to pee in the course of the night. I check that the pads haven't moved and I will turn it back on if needed until I fall back asleep. I try to leave the pads on all night if possible. As long as they stay where they are supposed to. The reason I do it, is because if I turn on the light to pull the pads off and place them back on the protective clear backing, I may not fall back asleep. Sometimes I even use the pads on the lower back above the buttocks at night. Like I said, for me my mind gets fixated on the pulses, and it diverts attention away from the pain. And since the pain decreases as I fall asleep, that's the point I am trying to get to, the most comfortable level as possible.

It doesn't hurt to try it. Maybe it will work for you and maybe it will not. There are other parts of the body that they claim that you can place these pads that will reduce pelvic pain. There is even an area around the ankle where I believe you stimulate the tibial nerve, and like a trigger point it's supposed to relieve the pain. That is something I would like to discuss more with my therapist with the 4 pad unit and placement. Now it may actually work there or it may not, but even if it's a placebo effect that reduces or eliminates the pain and discomfort for even awhile, I'll take it whenever I can get it. I think you have to figure out the sweet spots for the best effect. The less pain I feel, the less stressed I feel. Since I know stress is a major trigger for me, anything that minimizes it for me, helps me psychologically. And I can always use the sleep, because it never comes easy for me.

Hope the info helps!

[ChgoGuy]

The fact that you have hit trigger points with the wand is strongly suggestive that you have a run of the mill case of CPPS, complicated only by the urge issue, which may resolve as the other symptoms resolve. You should get professional internal massage. The Wise Anderson clinic, with their top-rate therapist on hand, would be a good option.

That option is always on my mind. The difficult part for me would be getting on a plane for 4hrs. I can't even feel comfortable sitting in my car for an hour. At about 6'2" I was uncomfortable sitting in a plane before the pelvic pain started. But if and when I get desperate enough, I just might have to do it.

[eltenso]

Thanks a lot, ChgoGuy. I thought you meant a device for sleep, like this one: www.tenspros.com/Sleep-Assist-Stimulati ... p_620.html
But this other unit, as long as it helps to calm some of the discomfort, may help me fall asleep. I have always been a poor sleeper too, and in the last years, CPPS, anxiety and insomnia have made me resort to benzos. Now I am kind of addicted to them, and I need to get rid of it, so I am exploring other options.
I tried something called tibial neurostimulation, but it did not work at all for my frequency and hesitancy issues.
Good luck!

[ChgoGuy]

eltenso - That is why I bought the newer unit. It's to explore other options using stim to cut pain. It's more on an experiment. The device wasn't too costly, so I bought it. Eventually I might introduce the 4 pad unit for sleep. My #1 complaint is urgency along with frequency, although not much comes out, but I believe that's because I have urge when there is little if any urine in my bladder. I'm right there with you with the CPPS, anxiety and insomnia. Although I don't do much with the benzos. Maybe take a Xanax if it gets real bad, and I'm not sure that even helps anymore. I did have to resort to.5mg of Lorazapam for the past 3 days after a huge urgency flare. It's calmed it down for now even though I had bad luck with it earlier on. Seeing my Urologist tomorrow. I know I may have some BPH issues, but don't tolerate any of those drugs at all. I may have to seek other options. I try to make it thru this with as little drugs as possible. Because constipation is a main side effect of so many drugs, constipation while trying to have a bowel movement is always a guaranteed flareup for me. You can't end having bowel movements, so the flareups will continue until I get those trigger points under control.

As far as the TENS unit goes, try it out. If it doesn't work or help, you can always use it for other muscular and or back pain. I really do crank it up though! Have you tried the L-Theanine yet to help calm you down? I bought some Friday and am giving that a try also. I'll see how that goes. Too early to tell it's results, however I have been pretty calm the last 2 days.

[eltenso]

My main complain is the same, Chgoguy. Urgency, frequency and hesitancy as well. I used to believe I was not completely emptying my bladder (some of the ultrasounds I've had show significant residual urine, others don't), but I am starting to consider I just have the urge when there is little in the bladder. However, I have a hard time understanding why it happens more during sleep when one is supposed to be more relaxed. I have tried Flomax, Rapaflo and Detrol, to no avail. Detrol actually made peeing even more difficult, as amitriptyline did.

I got L-Theanine, and I am doubting whether to start taking it, or giving another try to Hydroxyzine which is supposed to help with the burning in the urethra.

[ChgoGuy]

I may ask the Urologist tomorrow about the the Hydroxyzine too. I've shown some residual urine in ultrasounds, but never more that 200ml. I think some is normal. I also had zero luck with all those drugs you mentioned. I find that the Amitriptyline helps, but makes me retain a lot of urine. The only way to get rid of it then, is to drink coffee, which doesn't help the situation either.

[eltenso]

Hydroxycine is usually prescribed for IC, but also for chronic prostatitis. It is an anxiolytic too.

[ChgoGuy]

This question goes out to anybody. What is the typical Hydroxzine dosage and reccomendations for taking it daily? I have a bit to discuss with my Urologist tomorrow.

[webslave]

From the ICA:

Most patients start with a 10 to 25 milligram (mg) dosage of Atarax, Vistaril or their generic equivalent at bedtime every night for 1 week, and progress to 50 mg every night the second week. Ideally, within one month the dosage is increased to 75 mg, 50 mg taken at night and 25 mg taken during the day. Benefits of hydroxyzine may be seen within a few weeks to two months after initiating therapy.

[ChgoGuy]

Any pros or cons to taking this? Anything to look out for or be aware of? I've got to get to sleep now before work tomorrow (before the doctor visit). I may not have the time to research it fully on my own, or before then. Any quick info to bring to him in case he is clueless about what it's taken for is appreciated. Thanks much!

Have a good night All!!

[ChgoGuy]

Saw the Urologist today. He's standing firm that I don't have IC, doesn't believe that my prostate size is the issue, and that it's muscle and nerve related. In other words, he still believes the issue is CPPS only. Okay - So I got that. So we discussed Hydroxzine, to which he never heard of it so wouldn't write me a prescription for it. Told me to try Cimetidine instead. I asked if he would write me a prescription for anxiety for when the urge get's brutal like last week. He balked and said he can't write prescriptions for benzo's. I have some left over Xanax that I occasionally use when needed, but I am surprised that he wouldn't at least give me a script for something else. I guess I will have to talk to my Internist - IDK! Any thoughts?

[webslave]

Don't see that uro again. He's a loser who knows zip about pelvic pain syndromes.