ChgoGuy thread

[eltenso]

Another evidence of the incompetence of many urologists, ChgoGuy. The correlation between anxiety and pelvic pain issues is nothing new in medical literature. I have been prescribed benzos by two urologists: Valium by an urologist in my home country, and Xanax by another one here in the US. This same urologist prescribed hydroxyzine. I am still debating whether to give it another try.

[ChgoGuy]

So I have been thinking about it a little before I responded, especially to Webslave. I think I might be on to something.

Webslave - Remember I asked you yesterday on another thread about a Urologist DO vs Urologist MD? Now it makes sense why my current Urologist wouldn't give me the Hydroxzine. He is a Urologist DO, which explains his reasons. Let me explain: My last Urologist was a good Urologist, but his bread and butter is specializing in Cancer. So he referred me to my current Urologist, because he felt he would be a better fit for my issues. In all honesty, I do believe that he is more understanding about CPPS. I do like the guy. I think he is trying his best. But maybe the problem is that he still lacks experience with dealing with it or that he is still trying to learn more about it?! Then add to the fact that he is an Osteopath, may explain why he takes a different approach without resorting to medications. Does that make more sense? Not giving me the meds doesn't help me, but I don't think he is trying to be a jerk about it. I think he is trying to follow the path of his Professor who does a lot of Urological work with Veterans who have CPPS.

[webslave]

Hydroxyzine is not a dangerous med, so you should be able to get it from a primary care guy. It's an old school antihistamine. Just go to another MD to get this med, and explain that it is used in pelvic pain conditions. Take a study with you as proof, e.g. https://pubmed.ncbi.nlm.nih.gov/19006474

[ChgoGuy]

I trust what you are saying Webslave, and I did research it myself before I asked him to give it to me. I was bit perturbed when I walked out of the visit, but then I figured, his approach to treating things is a little different than the other Urologists I've seen already. But I do think he does , at least, care more than the other Urologists I've seen. I even was hoping he would give me some type of Benzo like Ativan to use only when I get a really bad urge flareup like last week. What sucks, is that I saw my PC a month ago, and I'm wondering if he would be able to give me a script for both if I messaged him thru the Hospital's online services. It's either that or another visit, but I may have to wait another month or so to see him because of my schedule.

On another note, I can't wait to get back into PT in 2 wks. I need to learn hands on what I can do to see better results by doing the self treatment at home. I think I do an okay job by myself, but still feel I may not be hitting or finding all the triggers internally myself. Some days I feel like I am annoying my bladder and or prostate.

[webslave]

Some docs are simply averse to following the lead from a patient. If you suggest something, they say no in a knee-jerk fashion. Avoid medics that behave this way.

[Amonges]

Chgoguy, hey just wanted to see how you were feeling. How is the internal trigger point stuff coming along? Do you notice a difference ?

[ChgoGuy]

Chgoguy, hey just wanted to see how you were feeling. How is the internal trigger point stuff coming along? Do you notice a difference ?

Regarding pain, it's gotten better. I'm going to guess it's possible that the Quercetin, exercises, internal trigger point work and possibly the L-Theanine is helping. I've laid off the Myrbetriq, and haven't noticed that the urge has necessarily gotten worse at all - yet! In fact laying off the Myrbetriq allows me to pee a little bit better instead of retaining it. I am still getting some annoying urge and pain in the urethra and tip with some sitting and with sex and bowel movements, but it's a little bit improved. Yesterday the urge was slightly annoying for no reason I can think of. So overall, I think I'm making small steps. I expect that there will be more bad moments to come. I start up PT again next week for a short period of time. Hopefully I can use the time to learn how to better hit those trigger points. I'm kind of looking forward to going. The place I go to, they have been awesome to me. My therapist? I can't say enough about her. I have more confidence in her than anybody else. Perhaps I should see a psychologist in the near future. I'm pissed about a lot of things and people, and I need to figure out why it's been so hard to just let it go.

[Amonges]

I’m happy to hear your getting a little better. Keep up the regime. Sometimes you will flare but that’s okay it’s all a part of the process. Sex and sitting aggravates my symptoms as well but doing the internal work and stretching is helping me. How often are you having ejaculation. I have been doing it about once every 2 weeks or so. I see a shift of frequency in pain which is a good thing. This is how I know the internal and stretching along with relaxation is helping. Hey I read a good book that helped me with letting go of stuff and basically dealing with everyday life. The book is called Mindfulness. Check it out, it could help give you a different perspective on life and how you can cope with situations in your life. Cheers

[ChgoGuy]

Question: Would internal trigger point work be beneficial everyday at all, or is it best to stick with every other day?

[webslave]

I'm a proponent of treating frequently.

[ChgoGuy]

Thanks Webslave. Most of the time it was really helpful afterwards, where as I felt relief. Every once in a while, it might feel unbearable and really uncomfortable. I know that is to be expected. But I started to feel that if I did it everyday, perhaps I might aggravate the muscles and end up in a flare for days or even weeks. I feel like I am making some progress, but I wish I could do better with the urge at times lately, since its a huge complaint. I'm seeing greater improvement during the day, while nights still continue to be a hassle. I'm waking up more often than usual again lately. I'm sure eventually I will have to look at more options geared at some BPH. There is this option calked Rezum where they steam the prostate tissue on the inside. It kills the tissue causing it to shrink, and some say it may replace TURPS and such, but there is little information on long term results. I know you said you don't discuss BPH, but its still a hurdle for some of us.

[Amonges]

Chgoguy, here's something important I wanted to share with you that helped me beat flare ups. After I had sex or ejaculated, I would immediately do internal work and stretch for a while. It is quite painful but I always took it until the pain disappeared. I also am supportive of doing internal work frequently. I wish I could go back in time and did the internal work in the beginning when this all started. I was against the idea of putting something up the butt, but after time went on I took a leap of faith and everything else fell into place.

[ChgoGuy]

I can't do the internal work in front of my wife. I just can't do it! That being said, it would be awfully weird to kick my wife out of the bedroom after sex, especially in the middle of the night or early morning to work on it after sex. I also am not in a position to leave the bedroom and go elsewhere with one of my adult children living in my home. So I am somewhat limited to when I can and can't do it. I usually do the internal work in the evening before bed, which is at least an hour or so before my wife comes into sleep. So I think you can see my predicament.

What's been frustrating, is that I keep waking up like I have to pee bad, but I really don't. On a good night, I can go 2-3 hrs without having to go. But some nights it's like a cycle from anywhere from 20min to every hour. And I swear once I get out of bed, it settles down a bit. It's as if my bladder is being pushed when in a laying position, kind of like what happens with a pregnant woman. At 6' 1" in height, I am a big guy. So sometimes I have to wonder, why when I lay down or try to sleep, I feel like somebody is dancing on my bladder. I swear sitting or trying to sleep has become a curse. But when I am moving around or working, things tend to calm down quite a bit.

Every once in awhile you will catch me saying it again, but I truly do appreciate the time and effort some of you put in, regarding myself. Even though I still feel like $#!+ at times, I feel like a huge weight has been lifted off of me lately, and it's because I no longer feel so isolated by this. So as always - thanks!

[ChgoGuy]

BTW - A nice hot shower directly after sex or a hot bath does help.

[eltenso]

It's great to have this forum, indeed. I wish I had joined it earlier, when I first got AHIP. Maybe I should have started PT then, and I would be better off now.
Anyway, my main complaint is also frequency while sleeping, similar to yours Chcoguy. I've given a lot of thought to it, since it did not make sense to me that when one is supposed to be more relaxed I have to pee so often. Now, I think the issue is that maybe I am not relaxed: just as I unconsciously clench my jaw, I unconsciously clench my pelvic muscles. The fact that I have way more hesitancy at night than during the day supports this hypothesis. Also, maybe the sleeping position is a factor: I sleep in the prone position, and I am trying to adopt the semi-fetal, but it's hard for me to change that habit.