Announcement

Collapse
No announcement yet.

I would be thankful for any advice you might have for me.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • ICNDonna
    replied
    It was just a guess --- I've been trying to think of some things you can try while you wait for your appointment.

    Donna

    Leave a comment:


  • BillB
    replied
    I haven't thought of that! Thank you for pointing this out!

    Leave a comment:


  • ICNDonna
    replied
    It should have helped by then, but if you weren't watching your diet at that time, it might be worth a try along with your diet changes?

    Donna

    Leave a comment:


  • BillB
    replied
    I must have taken it for about 2 or 3 weeks... That was early on, when my flare was bad...

    Leave a comment:


  • ICNDonna
    replied
    My husband couldn't tolerate Flomax, but Hytrin worked for him. However, he didn't have IC. How long did you take Flomax? Sometimes it can take several weeks for a medication to have effect --- I am totally not an expert in this area, but if you only took it for a few days, you might want to ask your doctor.

    Donna

    Leave a comment:


  • BillB
    replied
    I used to take Tamsosulin/Flomax, which I thought was also a smooth muscle relaxant. That hasn't helped me, but perhaps Vesicare will work better.

    Leave a comment:


  • ICNDonna
    replied
    There are several medications that help relax the bladder muscles --- I usually refer to them as smooth muscle relaxants. One is Vesicare (brand name for Solifenacin), a medication for overactive bladder. It helps relax the bladder muscles and might be worth a try for you. It does require a prescription. I suggest you google Solifenacin to learn more. Mirabegron (Myrbetriq) is another. Sometimes it takes trying more than one before finding the one that helps the most.

    You could call your doctor to see if he will prescribe one of the relaxants to try before your appointment.

    Donna

    Leave a comment:


  • BillB
    replied
    Myrabetriq is what my urologist wanted me to try. I ended up not taking it because the side effects for it were unacceptable. Vesicare's side effects are a better. Thank you!

    Leave a comment:


  • Chris Schultz
    replied
    No I haven't. Perhaps something slight at the beginning, but I take it at night. The medicine I stopped it for was Myrabetrig which didn't help me at all. Hope you can find something that helps.

    Leave a comment:


  • BillB
    replied
    Thank you for letting me know about Vesicare. It hasn't been on my radar. You haven't had any serious side effects from that, right?

    Leave a comment:


  • Chris Schultz
    replied
    You are very welcome! For me, only the Vesicare helped with the urgency. A few years ago, I tried another medication instead of the Vesicare and within the week the urgency was back and I had gone into a painful flare for another week. So at least I know the Vesicare is doing its job, and isn't unnecessary.

    For me, the diet is what has helped with painful spasms and flares. I was on a very restricted diet for probably two or three months. My pain symptoms didn't stop, but just got milder, but every day. I had never had symptoms every day before the diet, so I didn't understand. The urologist I was seeing only wanted to talk about more medication, but I kept pressing him to tell me why isn't this diet at least making it better. Finally he said it was stress, and that clicked for me. I knew stress was a huge trigger, so clearly, though I didn't think so, I was obsessing over food. And maybe even restricting too much? So I kept what I knew to be the worst triggers out of my diet, and relaxed about everything else, and stopped incessantly reviewing my food diary. I had the info I needed, I needed to let it work. I was symptom free on a daily basis probably a few weeks after that. Then I would only have occasional mild pain, and would eat soothing foods until it was gone. I would probably only have a more serious and painful flare once or twice a year, usually due to long travel days and radical diet changes while traveling.

    I hope this makes sense enough to be helpful. Everyone is so different, but sometimes just one bit of information can make a huge difference.

    Leave a comment:


  • BillB
    replied
    Thank you so much for your post.

    My symptom is urgency. I have been on a very restricted diet (rice, cabbage, bread, fish, and mushrooms, and on most days that's it) for about 4-6 weeks.

    [Before that, I have been consuming tomatoes in Large (e.g., 3 lbs of salad) quantities. ]

    Thus far I haven't noticed a Big improvement in my symptoms. Moreover, sometimes things intensify/worsen for no reason. Yesterday I didn't try any new foods, and yet today I am feeling worse.

    You said that it took months before you felt better on this new diet. First of all, how many months was it? Second of all, does what I describe above (fluctuations for no reason, possibly very minor improvement) sound similar to what you experienced before the effect of your new diet "kicked in"?

    It is also helpful to know that Bladder Builder Can cause problems. Perhaps I am feeling worse today because 4-5 days ago I took that supplement.

    Thank you for sharing your story!

    Leave a comment:


  • Chris Schultz
    replied
    Hey Bill, I am sorry to read about your troubles...since I'm not on the board regularly, I just read page one and page eight, so forgive me if I'm responding to something that has been resolved. I just happened to notice that your symptoms seem to have started like mine ( although I'm a woman, so no prostate issues! ) Anyway, the first signs that I had any problems was an incredible urge incontinence. I felt like I had to go so badly I thought I was going to have an accident. It was so upsetting that once I made it to the bathroom, I never noticed that my bladder wasn't even that full. These events happened when I was driving long distances drinking caffeine along the way. Thankfully I came upon a kind hearted doctor at the Urgent care for a suspected UTI ( and there was none) who referred me to a gynecologist who prescribed Vesicare which helped my urge incontinence. Still my UTI symptoms occured on and off for years, and even though I told my doctor I thought thecranberry juice she told me to drink more of made it worse, plus all the negative UTI tests, my doctor never suggested IC. Finally a new doctor did, and as soon as I read about it ( and the diet) I knew! (How did my doctors up till then not know?)

    Anyway, for me, I feel a lot of my unexplained symptoms were solved after awhile on the diet. It was as if I had such an underlying buildup of everything bad ( coffee, alcohol, tons of tomato, a new shellfish allergy, lots of fruit and constant cranberry, soy) , that it took awhile to get it all out of my system, so to speak. Or perhaps just let my bladder heal some. Plus the huge amount of soy in absolutely everything! Now, a little bit if some of those things every so often is okay, because I don't have so many potential triggers in my diet every day. I've completely cut out things like carbonated beverages and most caffeine and citrus so that I can have a "little" alcohol or citrus and coffee "flavored" steamers ( frothed milk). In other words, if I ate the diet I have now when I first was diagnosed, I would still be in a lot of pain. I had to eat a very safe diet for months to get to this point.

    One last thing...I also had a terrible flare after beginning Bladder Builder. I was really disappointed, but I guess I need to focus on what helps, not constantly wondering why certain things don't. I wish you well in your search for the same.

    Chris

    Leave a comment:


  • BillB
    replied
    I ate two foods that I haven't been eating all of this time: some almonds and frozen blueberries. I had almonds earlier, so I am pretty sure that it isn't the almonds. I had blueberries several weeks ago too. I ate them on a number of days and on one of those days I felt worse afterwards. Perhaps that's the second strike against blueberries. I will wait a long time and try them again later.

    Right now the urgency is minor, and I feel mostly significant pressure. The pressure is bearable, the discomfort resulting from the pressure is mostly psychological - I keep being reminded that I have a serious chronic condition...

    On
    https://www.health.harvard.edu/a_to_...ystitis-a-to-z
    I read
    "How long interstitial cystitis lasts varies. In some people, it is a chronic condition that lasts for many years, while in others, it disappears suddenly. When the condition disappears suddenly, symptoms may return suddenly, even years after the first illness."

    I guess it isn't realistic to hope that it "suddenly" goes away by itself... It is ridiculous that the doctors use the word "some people" instead of letting us know the actual fraction of people this happens to.

    Leave a comment:


  • ICNDonna
    replied
    One thing you could do is stop both for a few days, then try them again, but one at a time --- especially when I'm dealing with over the counter remedies. I suggest adding them one at a time --- that way if there's a reaction, you will know what caused it. However, I doubt that either of the two is a problem.

    If you're keeping a food/drink diary, if you post what you ingested the day before your flare, I might be able to pinpoint a problem.

    Donna

    Leave a comment:

Working...
X