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I have a success story and I want to share it.
I was diagnosed in 2009 and had the test where they put a camera up you and take a peek at your bladder, which I found exceedingly uncomfortable. One of the worst parts of that was how much it hurt to pee afterwards, but it went away in a few days.
I did not have ulcers on my bladder lining.
Anyway, I felt terrible urgency, even right after urinating. It was hard to do something as simple as go for a walk outside, because I knew the whole time I would feel like I had to pee.
And I tried Elmiron but had a bad reaction to it, and figured it was best to not torture my body any more.
It was pretty clear to me that my years-ago 15-cup-a-day coffee habit had probably worsened or maybe even triggered my bladder pain and urgency.
Years earlier, I had cut down to just one or 2 cups of coffee a day, and then even switched to tea, but the damage had apparently already been done.
I remember crying and wailing after my diagnosis, because I had some other health problems that were unrelated, and the combination felt overwhelming to me.
I started taking Cystoprotek and desert harvest aloe. I stayed on the IC diet religiously.
Two or three years later, my bladder had apparently healed itself, and is now functionally normal.
So I would like to tell you that there is hope!
Here is what I would advise, if I had a friend who had this and would do almost anything to heal it.
Follow the diet, follow the diet, follow the diet. Quit complaining about not being able to drink coffee or tea, accept the new reality with all of your being, and move on and find something else to drink.
I drink a lot of teeccino and chamomile tea and other innocuous hot drinks, often with milk in them, sometimes with milk and sugar.
I think one of the most important things I did was dilute my urine. I consistently drank at least 120 ounces of fluid a day.
I made a carafe of weak tea or something else on the diet, always on the diet, and made myself drink two full carafes, 58 oz each, every day. I think that created an environment where my bladder could begin to heal.
I am also convinced that Cystoprotek was one of the most important factors in my healing.
I could not always find it, Amazon did not always have it, and I noticed that they made an almost identical product called ProstoProtek, so sometimes I took that, and it seemed to be just as helpful.
I also took an antihistamine called hydroxyzine and that seemed to help to and it's cheap. Apparently one component of this disease is mast cell activation, about which I know very little, and the antihistamines seem to help.
I can tell I have healed because I can have coffee now, with no urgency. I stay on the diet anyway because I am not interested in a repeat of those episodes of pain and terrible urgency.
At my worst, it seemed like my bladder would only hold about a tablespoon of urine before it signaled it was time to pee.
It was awful — I couldn’t go anywhere or do anything, because I had to stay near a bathroom.
Of course I couldn't sleep through the night, I was up every hour or two needing to pee, and that drove me crazy with pain and anxiety.
Oh! One other drug helped me a lot. Remeron, also known as mirtazapine. It's a trycyclic antidepressant that tamps down nerve pain. It helped me sleep at night. Highly recommend, a very good drug for me, and one that I reacted really well to.
So please, do not lose hope.
My recommendation is that you create an environment where your body can heal itself by
1. diluting your urine,
2. sticking to the IC diet, and
3. adding CystoProtec and desert harvest aloe vera.
Hope this helps. It was about two years before I saw any improvement, you just have to stay the course and recognize that healing is often slow.
We all want things so fast, and our culture moves so quickly now, that it’s easy to mistake a slow trajectory for no improvement at all.
But I’ve long thought that the direction I was going was far more important than the speed, and this is a good example of why that's true.
Best of luck to you all. Stay on the diet! Drink more fluid! Consider CystoProtek if you cannot take Elmiron!
Cheers,
Laura
I was diagnosed in 2009 and had the test where they put a camera up you and take a peek at your bladder, which I found exceedingly uncomfortable. One of the worst parts of that was how much it hurt to pee afterwards, but it went away in a few days.
I did not have ulcers on my bladder lining.
Anyway, I felt terrible urgency, even right after urinating. It was hard to do something as simple as go for a walk outside, because I knew the whole time I would feel like I had to pee.
And I tried Elmiron but had a bad reaction to it, and figured it was best to not torture my body any more.
It was pretty clear to me that my years-ago 15-cup-a-day coffee habit had probably worsened or maybe even triggered my bladder pain and urgency.
Years earlier, I had cut down to just one or 2 cups of coffee a day, and then even switched to tea, but the damage had apparently already been done.
I remember crying and wailing after my diagnosis, because I had some other health problems that were unrelated, and the combination felt overwhelming to me.
I started taking Cystoprotek and desert harvest aloe. I stayed on the IC diet religiously.
Two or three years later, my bladder had apparently healed itself, and is now functionally normal.
So I would like to tell you that there is hope!
Here is what I would advise, if I had a friend who had this and would do almost anything to heal it.
Follow the diet, follow the diet, follow the diet. Quit complaining about not being able to drink coffee or tea, accept the new reality with all of your being, and move on and find something else to drink.
I drink a lot of teeccino and chamomile tea and other innocuous hot drinks, often with milk in them, sometimes with milk and sugar.
I think one of the most important things I did was dilute my urine. I consistently drank at least 120 ounces of fluid a day.
I made a carafe of weak tea or something else on the diet, always on the diet, and made myself drink two full carafes, 58 oz each, every day. I think that created an environment where my bladder could begin to heal.
I am also convinced that Cystoprotek was one of the most important factors in my healing.
I could not always find it, Amazon did not always have it, and I noticed that they made an almost identical product called ProstoProtek, so sometimes I took that, and it seemed to be just as helpful.
I also took an antihistamine called hydroxyzine and that seemed to help to and it's cheap. Apparently one component of this disease is mast cell activation, about which I know very little, and the antihistamines seem to help.
I can tell I have healed because I can have coffee now, with no urgency. I stay on the diet anyway because I am not interested in a repeat of those episodes of pain and terrible urgency.
At my worst, it seemed like my bladder would only hold about a tablespoon of urine before it signaled it was time to pee.
It was awful — I couldn’t go anywhere or do anything, because I had to stay near a bathroom.
Of course I couldn't sleep through the night, I was up every hour or two needing to pee, and that drove me crazy with pain and anxiety.
Oh! One other drug helped me a lot. Remeron, also known as mirtazapine. It's a trycyclic antidepressant that tamps down nerve pain. It helped me sleep at night. Highly recommend, a very good drug for me, and one that I reacted really well to.
So please, do not lose hope.
My recommendation is that you create an environment where your body can heal itself by
1. diluting your urine,
2. sticking to the IC diet, and
3. adding CystoProtec and desert harvest aloe vera.
Hope this helps. It was about two years before I saw any improvement, you just have to stay the course and recognize that healing is often slow.
We all want things so fast, and our culture moves so quickly now, that it’s easy to mistake a slow trajectory for no improvement at all.
But I’ve long thought that the direction I was going was far more important than the speed, and this is a good example of why that's true.
Best of luck to you all. Stay on the diet! Drink more fluid! Consider CystoProtek if you cannot take Elmiron!
Cheers,
Laura
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