My story -- please help!

[ChgoGuy]

I tried the Valium suppositories, but decided to pass on them due to my job. I wasn't on them long enough to give an opinion. I know Dr. Dugan suggests to try them. I had better luck with with Beclomethasone suppositories, however Webslave made a valid point that anything steroidal comes with possible side effects. Also, there are limits on how long you can take them.

She may have been a bit rushed because I know she books a lot of appointments in any given day, which is quite normal at Rush, especially if you ever dealt with the Orthopaedic section. All I can say is that hitting the triggers, especially at 1 and 11 oclock, have helped me tremendously. Last night was a tough night after using the wand, but I'm confident in the end it will help me.

If you need suppositories, you'll have to get them made. Other than a compound pharmacy in Naperville or Bloomingdale, I chose to have them made at Rush Oak Park Hospital, because of proximity to my house and convenience. However for $5 they will ship them.

[eltenso]

So you need a prescription from a M.D. in order to have the Valium suppositories made at a compound pharmacy?
I tried the ProsCure suppositories (www.amazon.com/Restores-Science-Health- ... B00BU95DWA), for a couple of days, but did not see any improvement in my nocturia.

[ChgoGuy]

eltenso - I'm not sure if you can get Valium Suppositories outside of a Compounding Pharmacy, but to answer your specific question, you most definitely need a prescription for Valium in any form.

[Amonges]

Sgottes, yes you should be stretching everyday at least 2x to 3x a day. When I was stretching and still am I can recreate my abdomen pain and I tell you it hurts so much !! Afterwards the next day the tightness disappears or calms down. Only way tightness comes back is from ejaculation or stress. So I say this to you keep stretching so you can loosen up the muscle fibers. How long are you stretching for?

In my case I’m stretching in each position for a good 2 minutes and then when I’m done with one full set I’ll do it again. Basically takes about 30 to 45 minutes of stretching along with deep breathing.

[Sgottes2]

I’m not stretching that long. I’m just frustrated because my days are no doubt worse when I incorporate stretching vs just doing nothing. I’m willing to endure some more pain if it means helping myself in the long run... but who knows with this condition.

[Amonges]

Try out the stretching, you will flare and feel the pain but after it will subside. This is a good thing !!! Stick with it and breathe when u do this. It took me a long time to figure out how to deal with my abdomen pain. The stretching part was the turning point for the abdomen. Just have to do trial and error. You can do it don’t fear the pain .

[ChgoGuy]

@Sgottes2 - Haven't heard from you in months. If you see this, I am interested in how you are doing. Any updates from you? How did therapy go, and have you gone back to Dr. Dugan? Hope all is well?!?

[Sgottes2]

Hey ChgoGuy, thanks for caring my friend. So here is an update. I'm two months into a three month course of physical therapy with Anita at Presence. She's good -- she has been a pelvic floor therapist for 20 years. Things seem to be getting better, but I am by no means cured. Still having pain and discomfort at the tip, but less so than before. No more numbness / spasms. Less frequency and urgency, but still having issues with the quality of urination. Flow is not always good and there is still some dribbling most of the time. Less pain after ejaculation, but still some. Random flares, but most days of the week are manageable.

I am using the TheraWand at least twice a week (with initial instruction from the PT), but I know I need to pick up the pace there. Oddly enough, my trigger points are at 3 and 9 o'clock -- and not very far in. Maybe 2-3 inches. She also has me doing pigeon pose and child's pose (or happy baby) twice daily, along with some foam roller exercises, "milking the uretha", self intestinal massage, increased fiber intake, and increased cardio. I supplement with some of my own pelvic stretches too. Alcohol still helps and stress still hurts big time. I tried weed again and it helped immensely (like took away the pain for several days), but it still causes other systematic issues for me even after a long break, so it's not the solution. Probably only helps me because my system is still so tied into it from 15 years of abuse.

In my case, long term abstinence from weed is probably a big factor to ultimate recovery. It might take a year or more. But I also feel like I should give diet (gluten / dairy) and mindfulness a try. In addition, I think it's possible that my daily 1-2 alcoholic drinks, while very helpful in the short run, might be delaying my recovery. I've also been considering an SSRI for anxiety -- it's a challenge for me and I can't seem to manage it on my own.

Questions: Does anyone else get an uptick in discomfort after stretching or therawand? That always seems to happen to me, which is disconcerting, but it settles fairly quickly. Also, as far as alcohol goes -- it's strange because it totally eliminates the pain most nights with very moderate drinking, but it does cause more frequency in the short-run because I drink 16 ounces of a known bladder irritant within an hour every evening. Just wondering what people think... am I causing more harm than good in an effort to reduce my symptoms?

So hard to just stop all things that are enjoyable in my life. Clearly I'm not giving this 100% effort, but I am seeing improvements for sure. If things grind to a halt, I may try Whole 30 in January, which includes no alcohol, gluten, or diary for 30 days. Thanks for listening ChgoGuy and everyone else!!

How are you doing??? what's the latest on your end?

[ChgoGuy]

@Sgottes2 - It's nice to hear how your progress has been going.

Let me answer your question from my personal experience. Stretching and using the Therawand more often than not will cause an uptick, and in some cases a flareup for me of any varying type of degree. More so using the wand @ 1 & 11 o'clock can cause an issue. I think it's fairly normal to experience something after working on things. It sure sounds to me like you are having less problems after doing them than I am. Also, 3 wks ago I hurt my back at work, so I think some of the exercises and stretches I am doing for that, is not exactly helping me at this time.

Not that you posed any questions about the effects of alcohol you are consuming, but let me throw my 2 cents into that. I am not sure what you are drinking. When I drank, I was more of a beer drinker and awhile back I would drink some very fine red wines. I have dabbled with Vodka with mixed drinks. Since this happened, I don't drink anything but water. Over a year ago I had beer at a fundraiser for a guy I worked with who was dying, but I can't touch the stuff now. I think it's because being carbonated, just like soda, I am asking for trouble. There have been times where I wondered if I consumed something other than beer, if it would take off the edge, but I'm too afraid to find out. I've mentioned already that drinking water all the time, hasn't exactly made me feel better with this. Anyway - I think it's better for me to just stay away from all alcoholic beverages.

As far as everything else goes, I am still riding the rollercoaster of ups and downs. I started another 7 wks at Kamin for PT. I finished up and surprisingly I was granted another 5 visits starting yesterday. My number one complaint is urge. I had a good day today, until this afternoon and the urge machine kicked on again. It's not that it's excruciating, but it's just enough to constantly annoy me. I went back on Amitriptyline for now, and have been taking it with Valerrian Root before bed. I actually have been falling asleep for 4-5 hrs before waking up for the rest of the night. Generally I can't fall asleep for more than an hour. Webslave and Amonges suggested I try going Gluten Free, which I tried. I din't see any drastic changes other than a drop in weight. I'll gladly take that, but I may take another go at it for a longer period of time again. I'm open to it.

That's it! That's all I got for now. I just figured since we both reside in the same city, that I would like to hear how your experiences have been lately. Without having to go backwards and look, where did you end up going for PT again with Anita? You said Presence, but at which Hospital or Facility of theirs? I just remember you were over east near Lincoln Park??? All I can add is to keep up the good work, and keep us informed how you are doing.

[ChgoGuy]

@Sgottes2 - It's nice to hear how your progress has been going.

Let me answer your question from my personal experience. Stretching and using the Therawand more often than not will cause an uptick, and in some cases a flareup for me of any varying type of degree. More so using the wand @ 1 & 11 o'clock can cause an issue. I think it's fairly normal to experience something after working on things. It sure sounds to me like you are having less problems after doing them than I am. Also, 3 wks ago I hurt my back at work, so I think some of the exercises and stretches I am doing for that, is not exactly helping me at this time.

Not that you posed any questions about the effects of alcohol you are consuming, but let me throw my 2 cents into that. I am not sure what you are drinking. When I drank, I was more of a beer drinker and awhile back I would drink some very fine red wines. I have dabbled with Vodka with mixed drinks. Since this happened, I don't drink anything but water. Over a year ago I had beer at a fundraiser for a guy I worked with who was dying, but I can't touch the stuff now. I think it's because being carbonated, just like soda, I am asking for trouble. There have been times where I wondered if I consumed something other than beer, if it would take off the edge, but I'm too afraid to find out. I've mentioned already that drinking water all the time, hasn't exactly made me feel better with this. Anyway - I think it's better for me to just stay away from all alcoholic beverages.

As far as everything else goes, I am still riding the rollercoaster of ups and downs. I started another 7 wks at Kamin for PT. I finished up and surprisingly I was granted another 5 visits starting yesterday. My number one complaint is urge. I had a good day today, until this afternoon and the urge machine kicked on again. It's not that it's excruciating, but it's just enough to constantly annoy me. I went back on Amitriptyline for now, and have been taking it with Valerrian Root before bed. I actually have been falling asleep for 4-5 hrs before waking up for the rest of the night. Generally I can't fall asleep for more than an hour. Webslave and Amonges suggested I try going Gluten Free, which I tried. I din't see any drastic changes other than a drop in weight. I'll gladly take that, but I may take another go at it for a longer period of time again. I'm open to it. I also figured I would take a shot at some Psychotherapy last week. I figured it's the only thing left I haven't tried. I'll see how that goes too.

That's it! That's all I got for now. I just figured since we both reside in the same city, that I would like to hear how your experiences have been lately. Without having to go backwards and look, where did you end up going for PT again with Anita? You said Presence, but at which Hospital or Facility of theirs? I just remember you were over east like maybe Lincoln Park or Lakeview??? All I can add is to keep up the good work, and keep us informed how you are doing.

[webslave]

as far as alcohol goes -- it's strange because it totally eliminates the pain most nights with very moderate drinking, but it does cause more frequency in the short-run because I drink 16 ounces of a known bladder irritant within an hour every evening. Just wondering what people think... am I causing more harm than good in an effort to reduce my symptoms?

Alcohol, all you need to know:
viewtopic.php?t=7741

[Sgottes2]

Yes Chicago Guy, Anita it Presence. It’s in Lakeview at a medical office building near Presence hospital. She has been good, but I don’t think there is much more she can do to help me after 11 sessions. I have one more to go and then need to keep it up on my own now. Thanks for the update on your situation, glad PT is going well and I’m sure you will keep improving. Gluten and perhaps dairy free is a healthy diet, definitely worth a try even if it doesn’t improve symptoms. I’m sure you need to do it for at least 3 months to see if it will help at all. Symptoms improve very slowly with this — it takes long term changes. Which I still haven’t fully committed to, unfortunately. I’ll try to check this more often and will provide another update with some substance in the next couple of weeks.

[ChgoGuy]

Good luck Sgottes2!