ChgoGuy thread

[ChgoGuy]

I can't take the Alpha Blockers because they have caused the chronic night time long painful erections (and or priapism for me) that started when I started taking Flomax, and never went away. I also didn't tolerate the side effects well or the hypotension well that it caused. So I am lost what other options that are available to discuss outside of surgery. More so since they don't believe BPH is a big concern for me. I urinate quite fine when I have to urinate. Its when I try to urinate because I have urge, and not because I have to, when the problems arise. Because of the constant urge, I just don't know when I really have to pee or not pee anymore. I believe I only have a problem and dribble when its a false alarm. So that is why I believe I need to calm the urge. The urge is what aggravates everything and tensing me up in the pelvic area. My life revolves around worrying about access to a toilet 24/7. And if its also over active bladder, I've taken almost every medication for that with little if any success, not limited to just the anticholinergics. In other words Webslave, nothing ever works. Which is why every Urologist I've seen gets rid of me as a patient. That's why I turned to this forum. I'm looking for a solution after all the failures.

[webslave]

Unfortunately, OAB is not the subject of this forum and my knowledge in this area is not great. I suspect you have a touch of BPH, some OAB and some CPPS. In other words, a complex case, which probably explains your difficulty in finding help from uros. All I can suggest for you as far as this forum goes is to search the forum for each of your symptoms and see how others have coped. You may get lucky and come across something useful. Sorry I couldn't be of more help.

[ChgoGuy]

My hope meter just took another big hit.

[Amonges]

Chgoguy, when I first started with this condition I had constant frequency and urgency to the point I would go so many times to the bathroom that it was so annoying and at times painful.

Through trial and error, what helped get rid of it was taking quercetin and following a gluten free and dairy diet. I can’t help but stress that for so many months I could not figure out what was causing this frequency and urgency along with pain. It was the foods that I was eating which was causing my pain! Eating a piece of bread or any wheat products and having milk or cheese was irritating my bladder.

I urge you to use the quercetin for a couple of months and staying away from gluten and dairy !!! Really research the foods that contain wheat and dairy and be careful of the ingredients. It would be best that you cook your own food versus going out to places so that your completely staying away from the foods that would irritate the bladder. If you have any questions or need more info you can contact me through email. Hope you start to feel better. Cheers !

Admin comment: I agree, diet can be key when all else fails. It was for me.

[ChgoGuy]

I appreciate your comment very much. I did get tested for Celiacs/Gluten intolerance early on and the results showed nothing to point that being my problem. However it does seem people still do better by maintaing a gluten free diet. That is the part that scares me, if indeed that would help. Why you may ask? My diet already is pretty strange, but not necessarily too bad. Since this happened, water is what I drink 99.9% of the time. I thought that would help. I don't load my food with tons of condiments, and I love salads preferably with oil and vinegar and the later doesnt appear to be a problem although its acidic. I don't eat cheese, other than mozzarella, because I'm Italian and pizza is probably my favorite food. Which is odd because just about everything on a pizza should aggravate this, but again doesn't appear to. And then there is pasta!! I grew up eating it all my life, and yet I eat less of it than I used to. I am content with meat and vegetables, but I can't eat meat all the time.

Unfortunately, I don't eat fish. Its the one thing I just never could eat, and I've tried, so I worry that if I were to try a gluten free diet, I would be really limited. Breakfast appears to be the hardest meal to restrict gluten. What really sucks, is that I would gladly try it if it would help. The main obstacles that I see, is my job. Without getting into details, Thats what makes trying and sticking to a gluten free diet seem the most difficult. But what really scares me about a gluten free diet? I spend so much time at work, that family time is very important to me. We eat out a lot lately. Probably not a great idea, but since I started having all these problems, I haven't gone anywhere. No vacations. No visiting family if I have to drive and sit in traffic. I basically work and go home. I went from being a guy who loved to keep moving and doing things, to a guy who is afraid to do anything that I loved, because I just have an almost constant urge to piss. So in my mind, a vacation to me, is sitting down to dinner outside my home with my family, and its always near by. So to go gluten free, I feel forced to be at home for it to be successful. Meaning I would be robbing myself of the only family time that gets me out of my dungeon (home). Going out to eat is all I have left. I already feel that I'm ruining my families life over my problem.

Whats really crazy, is that since this happened, the first year was horrible. Depressing!! I want to sell my home, just to get away from it because it just reminds me of this low point in my life. I've had people in my life die, and never felt this low. I really want to beat this. I'm not 20 yrs old anymore. I know I'm at that point in life where things start affecting us. But this urge?? I need to believe and have hope that I can make it better. Its the one thing I struggle with the most. Its the single most difficult part of this that makes it hard for me to function. Not that I am saying the pain aspect isn't difficult, but I find myself mumbling "Piss piss piss piss piss piss piss!!" all day. What hurts is that people think I'm full of shit and am making this all up!


I'm sorry I am rambling. I have been awake since 4am yesterday, and I have been at work for most of that time (yes even now) and have another 8.5 hrs to go. I'm too tired to check for typos, as I'm doing this off my phone. If you think a gluten free diet may help, even though the tests say gluten isn't an issue, I may have to make an attempt at it. But seeing what my diet consists of now, and my job, I know its going to be very difficult for me. Maybe I will hit you up if I have any other questions or need advise. I am just having a hard time believing that I just woke up one morning and all this hit me all at once like a nuclear bomb.Thanks for listening. I need to get back to work. ✌

[webslave]

If you had an intestinal biopsy (tube up rear end, sample taken) and that was negative for celiac disease, then you do not have celiac disease. That's the only completely reliable test. Non-Celiac Gluten Sensitivity is the other possibility though, so check out the symptoms:
https://en.wikipedia.org/wiki/Non-celia ... ensitivity

[ChgoGuy]

Webslave - 5 months after this hit, I explained to all my doctors that bowel movements were having an effect on the pain. So when they started telling me the 2 had nothing to do with each other, I took matters into my own hands. I lost 60 lbs in 3 months when this happened. I found a good Gastro who listened, and was concerned about my rapid weight loss. I told her that in the past I've also dealt with IBS. I already knew what the other Doctors weren't telling me. How people with CPPS have many of the same types of issues, but of course we all know. Most doctors, with all their education don't like their patients disagreeing with them.

So anyway... That Gastro I went to see, was able to convince my insurance that I needed a colonoscopy (my 3rd one) and an Endoscopy (my 2nd one) to check everything, incl. taking biopsies for Gluten. So other than 3 polyps, the biopsies for Gluten were clean. So Non Celiacs Gluten Sensitivity is possible, but I don't remember if it was checked or not. Could they test blood for that? I know I can do a search, but since we are on the subject, I figured I would ask. And although I know anything is possible, I haven't noticed flare ups due to foods with gluten. But I guess there is only one way to know for sure. And I do fit the profile as somebody who may have the Non Celiac type. Gastro disorders. Acid Reflux. Fibromyalgia - etc. etc.

And I will say it 100 times if I have to, but I sure appreciate the input from all of you.

[webslave]

You owe it to yourself to trial a gluten-free diet for at least 2 months to see if there is any effect on symptoms. There is no blood test for NCGS.

[Amonges]

Hey I agree with webslave as well. You should really try it out for a good 2 months and see how you feel. There are many good options to eat that doesn’t consist of wheat. For example you can have pasta but the pasta must be made from something else like corn, quinoa, brown rice, buckwheat, millet. Etc. You can get this stuff at like Traders Joe’s or supermarkets near you. You have to research what foods contain wheat. I have been gluten free and dairy free for about 8 months now and once you get use to the diet it becomes easy. I know you go out with the family and stuff, and sometimes it can be difficult on the road or while your working but you can do it. In the beginning it was a bit confusing to me because I did not possess the knowledge to really know what to eat but by researching and going over the foods, it became easy for me. I eat stuff like brown rice, quinoa, oatmeal that is gluten free, sweet potatoes , fruits, vegetables and etc. I also eat pizza and bread but it has to be gluten free and dairy free. They have these items in the supermarket, just need to find it. You can do it!!

[ChgoGuy]

Amonges & Webslave - I spoke to the wife about seriously trying this out yesterday. Eating the right stuff will not be a problem for me other than not eating any fish. It's really more or less about my work schedule. I will have to put together a plan, because I will have to depend on myself at first to put meals together myself. I even spoke to my partners at work, and told them if I do this, they need to quit asking me about going out to eat or ordering with them. They like to eat all the good stuff that is no good for anybody. I'm usually good, but sometimes I cave in. My other concern of course would be ever trusting a restaurant that claims they have gluten free items on the menu. That is just in case I find myself in a pinch at work, needing a meal. No doubt the hardest part will be giving up that family time on weekends when the only time I get to spend with them, is when I can get out of the house to eat with them. I just hate being home. I'm not a couch potato by nature, which makes my suffering even worse. I want to be out all the time, but it's been difficult the past 3 yrs..

On another note, but related.. My daughter graduated college at the top of her class for nutrition. She is taking a break before she goes back for her masters. She still lives at home, and eats quite healthy. When my wife told her that I might have to try this, her response was (jokingly of course) - "Oh boy! We're Italian!!!" I have tried a lot of different things because of her. Some I like, some not. BTW - I have had Gluten Free Pasta, and couldn't tell any difference. I just worry about following this diet, and being exposed to gluten through cross contamination or by mistake. Because I know just a little will have an effect.

There is something else that that I was worried about when this happened, tied to a HPB medication I was taking. It was known to cause severe "Sprue like enteropathy" in people who took it. It could damage the villi that is important in the process of digesting of food and the absorption of all vitamins and minerals into the body. When I lost 60 lbs in 3 months, I had no idea what was going on. Of course I couldn't find a doctor willing to accept there was a problem with this well known HBP medication. This was another reason I sought out the Gastro and had further testing. If it would have been found that I ended up with Sprue like enteropathy, then I would have been in the same situation as a Celiac with severe damage.

[webslave]

Sprue is another (outdated) name for celiac disease. This could be part of the puzzle.

[ChgoGuy]

I know Webslave. After the colonoscopy and endoscopy, my Gastro couldn't find any damage to the villi that could implicate the drug Azor, which has Amlodipine. Amlodipine has been linked to severe Sprue like enteropathy, and I was taking Amlodipine for a long time. When I started having all these pelvic problems, and I dropped 60lbs in 3 months, my fingers were pointing in many directions. Unfortunately I found most doctors not to be on my side. The Gluten issue had crossed my mind. Either it contributes and makes my pelvic pain worse, or it is the cause. It sure would be nice if I can find a doctor who would be on my side. The Gastro I saw, is no longer at the hospital I go to. I really felt my pelvic and gastro issues could be linked, but the doctors all said I'm crazy.

[Amonges]

Chgoguy, I know how you feel man. The doctors told me it was in my head and really did nothing for me but just run tests which all came back negative. The mind body connection plays a major role in fueling anxiety and it is important that we control our stress. Stretching and deep breathing combined helped to ease and control my pelvic pain along with internal trigger point with a Therawand.

I wanted to add something regarding diet protocol that took me a long time to figure out in terms of what foods were bothering me. Besides the gluten and the dairy, I noticed that almonds, cranberries, oranges, tomatoes, coffee, soda, alcohol really irritated my bladder and this was after the fact I discovered the gluten and dairy was bothering me. Stay away from stuff that is too acidic so you can heal. This whole experience was like solving a puzzle in connecting the dots which is no easy task when your confused and fueled with depression and anxiety. Really try it out and know that your not alone. Family and support is very helpful.

[ChgoGuy]

I haven't come across this anywhere else, but that's not saying that it hasn't been discussed here or elsewhere before. I just don't know.

Early on in this, all the usual medications had caused me a lot of severe constipation. All this did was exasperate my pelvic pain issues while trying to go to the bathroom with all the straining. I know that I am not alone here with that, as passing stool can be a trigger whether constipated or not. While going thru my first round of PT almost 2 years ago, my therapist had discussed using manual light pressure and pushing downwards toward the rectum to help move stool along thru a sluggish large intestine while constipated. I know this is no secret and is used in older people and other people who are constipated and/or have issues for whatever reason with elimination. I have to admit that it had helped me out at times.

But I discovered something when doing this. I had found that while putting pressure and pushing downward in the area of the mid Descending Colon and the Sigmoid Colon, I could reproduce extreme temporary penis pain and burning to the urethra and the tip. The same pain and burning I experience on a daily basis at some point. I'm guessing it's safe to say that this is some trigger point. If not, what else could it be? But why in that spot? Let me also note, that I can only trigger this pain if there is actually stool sitting in that area of the Large Intestine, even while just somewhat constipated. As I mentioned in other threads, I saw a Gastro too when this all hit me. I was trying to figure out why that it seemed like there was a connection between my bowel movements and the pain, burning and frequency. Of course after having a colonoscopy, there was nothing conclusive from a Gastro standpoint, that they there was any relationship with the CPPS issues, even though for some, we can clearly say there is a relationship between both.

I'm wondering if anybody else has experienced this, or has read about it elsewhere? I can't help but wonder what quite possibly could be going on in that area of the bowel, that could trigger this pain to the same area's that I also recreate internally with a Therawand at 1 and 11 o'clock. I also can't help but wonder, if stool in that area (especially while constipated) could be creating a trigger point for some of us? Because there is obviously something going on in that area for me, and it's just another thing I've discussed with multiple doctors that just get's disregarded.

Any thought?

[webslave]

At my worst, I had swollen lymph glands in my armpits, under my ribs and in my groin. My immune system was completely aroused and in panic mode. So you could have some of that in your groin. Or your stool could be pressing on part of the levator ani or other hyperirritable pelvic muscles. In the end, the reason is not that important. Don't over-focus on symptoms, pain locations etc because, as part of the hypervigilance many patients experience, it tends to delay recovery.