Interstitial Cystitis???
Replies
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I have it
I am still coming to terms with it. It hasn't been a good couple of years (broken toes, then broke my leg, then had ACDF neck surgery - in which that lead to the IC diagnosis). I was on MFP a few years back, and I am hoping to get back into the swing of fitness, just going to have a couple twists now......
If you don't mind my asking, how did neck surgery lead to an IC diagnosis?
Funny you should ask that......I know, it doesn't make sense in a normal sort of way.
I had a piercing for 14 years. I thought that whole time it was just getting irritated and had a lot of UTIs. I was even tested for IC in 2010 and they said I didn't have it (found out I was actually misdiagnosed at THAT time). After my ACDF, I didn't put the piercing back in, but I kept having the irritation. Since the piercing wasn't there, I knew something else was going on, and that's when I went back to the Urologist and they looked at my testing from 2010, and did another Cysto only to find out that is what had been going on for all these years...... 0 -
I have it I am still coming to terms with it. It hasn't been a good couple of years (broken toes, then broke my leg, then had ACDF neck surgery - in which that lead to the IC diagnosis). I was on MFP a few years back, and I am hoping to get back into the swing of fitness, just going to have a couple twists now......
If you don't mind my asking, how did neck surgery lead to an IC diagnosis?
Funny you should ask that......I know, it doesn't make sense in a normal sort of way. I had a piercing for 14 years. I thought that whole time it was just getting irritated and had a lot of UTIs. I was even tested for IC in 2010 and they said I didn't have it (found out I was actually misdiagnosed at THAT time). After my ACDF, I didn't put the piercing back in, but I kept having the irritation. Since the piercing wasn't there, I knew something else was going on, and that's when I went back to the Urologist and they looked at my testing from 2010, and did another Cysto only to find out that is what had been going on for all these years......
Surprised they ruled out IC based on your first cysto... it was my understanding it doesn't always show up in testing.0 -
I have it I am still coming to terms with it. It hasn't been a good couple of years (broken toes, then broke my leg, then had ACDF neck surgery - in which that lead to the IC diagnosis). I was on MFP a few years back, and I am hoping to get back into the swing of fitness, just going to have a couple twists now......
If you don't mind my asking, how did neck surgery lead to an IC diagnosis?
Funny you should ask that......I know, it doesn't make sense in a normal sort of way. I had a piercing for 14 years. I thought that whole time it was just getting irritated and had a lot of UTIs. I was even tested for IC in 2010 and they said I didn't have it (found out I was actually misdiagnosed at THAT time). After my ACDF, I didn't put the piercing back in, but I kept having the irritation. Since the piercing wasn't there, I knew something else was going on, and that's when I went back to the Urologist and they looked at my testing from 2010, and did another Cysto only to find out that is what had been going on for all these years......
Surprised they ruled out IC based on your first cysto... it was my understanding it doesn't always show up in testing.
It was a doctor that didn't believe in IC. A lot of people with IC can't hold as much in their bladder, but since I was still able to hold a large amount, he said I didn't have it (the new Urologist looked at his previous testing results and notes and said it should have been diagnosed at that time).0 -
Late to the discussion but want to add my two cents. I've had IC for about 4 years. I started taking glucosamine and chondroitin daily based on a research study. The study was looking into the efficacy of an herbal supplement in treating IC since it had become a popular self-treatment. The study was really small but the result suggested it could be helpful and recommended doing larger studies. I was a little worried about the supplement based on several forum posts I read, but the medical study mentioned that glucosamine and chondroitin were 2 of the 3 active ingredients in the herb, so I just buy those from the grocery store. I think taking them, along with serious diet changes, has helped make my flare-ups less common and less severe.
When I do have a flare-up, I drink a glass of water with 1/2 tsp of baking soda. I don't do this more than 3 times a day and no more than 3 days in a row, but it helps sooo much with the discomfort.0 -
I do take D-Mannose daily and I have been working on my diet - but it's hard since no one has the same triggers. I am also doing PT once a week (that's an experience that took me a bit to get used to) I have to get back into the gym, but the harder I press myself the worse I feel (not to mention, I haven't been fully cleared by the Ortho from the ACDF).0
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I have it I am still coming to terms with it. It hasn't been a good couple of years (broken toes, then broke my leg, then had ACDF neck surgery - in which that lead to the IC diagnosis). I was on MFP a few years back, and I am hoping to get back into the swing of fitness, just going to have a couple twists now......
If you don't mind my asking, how did neck surgery lead to an IC diagnosis?
Funny you should ask that......I know, it doesn't make sense in a normal sort of way. I had a piercing for 14 years. I thought that whole time it was just getting irritated and had a lot of UTIs. I was even tested for IC in 2010 and they said I didn't have it (found out I was actually misdiagnosed at THAT time). After my ACDF, I didn't put the piercing back in, but I kept having the irritation. Since the piercing wasn't there, I knew something else was going on, and that's when I went back to the Urologist and they looked at my testing from 2010, and did another Cysto only to find out that is what had been going on for all these years......
Surprised they ruled out IC based on your first cysto... it was my understanding it doesn't always show up in testing.
It was a doctor that didn't believe in IC. A lot of people with IC can't hold as much in their bladder, but since I was still able to hold a large amount, he said I didn't have it (the new Urologist looked at his previous testing results and notes and said it should have been diagnosed at that time).
Interesting you should say that. I have not been diagnosed, as it recently came to my attention as a possibility after having seen my ob/gyn and ruled some other things out. In the meantime, I've been tracking my symptoms and made some dietary changes so I would have more to present to the Dr. if/when I pursue a diagnosis. The discomfort is textbook (I've gone to the Dr. several times over the years for possible UTIs only to find no infection, until I just started ignoring it and found it would pass eventually.) But one thing that didn't seem to add up for me was that I don't have to run to the bathroom all the time and only occasionally need to get up during the night. However, I did recently read an article ( http://www.obgyn.net/articles/interstitial-cystitis ) that mentioned it's not unusual for patients either to present primarily with pain & discomfort and little frequency or primarily with frequency/urgency but little pain.
I might mention, what tipped me off about the possible IC connection was that my symptoms really kicked into high gear about 6 months ago. I started thinking, "What have I been doing differently the last 6 months that I wasn't doing before?" The answer? Coffee! I had, practically to the day, started drinking coffee regularly to give me a little mental boost in the morning. Not to mention that we had been eating a flood of tomato based dishes & soups. And hubby brought home a bunch of marked-down chocolate after Halloween. It was the perfect storm! I've eliminated those things and the symptoms have calmed down considerably, but I still notice a very distinct hormonal connection.0 -
Late to the discussion but want to add my two cents. I've had IC for about 4 years. I started taking glucosamine and chondroitin daily based on a research study. The study was looking into the efficacy of an herbal supplement in treating IC since it had become a popular self-treatment. The study was really small but the result suggested it could be helpful and recommended doing larger studies. I was a little worried about the supplement based on several forum posts I read, but the medical study mentioned that glucosamine and chondroitin were 2 of the 3 active ingredients in the herb, so I just buy those from the grocery store. I think taking them, along with serious diet changes, has helped make my flare-ups less common and less severe.
When I do have a flare-up, I drink a glass of water with 1/2 tsp of baking soda. I don't do this more than 3 times a day and no more than 3 days in a row, but it helps sooo much with the discomfort.
Technically, we're all late to the discussion, being as how this thread was originally from 2013! 0 -
I do take D-Mannose daily and I have been working on my diet - but it's hard since no one has the same triggers. I am also doing PT once a week (that's an experience that took me a bit to get used to) I have to get back into the gym, but the harder I press myself the worse I feel (not to mention, I haven't been fully cleared by the Ortho from the ACDF).
Do you just mean the harder you push yourself in general, or specifically in exercise? I'm having to be careful with that, because I notice if I exercise too vigorously, things tend to flare up (and I'm trying to lose weight here!)0 -
I do take D-Mannose daily and I have been working on my diet - but it's hard since no one has the same triggers. I am also doing PT once a week (that's an experience that took me a bit to get used to) I have to get back into the gym, but the harder I press myself the worse I feel (not to mention, I haven't been fully cleared by the Ortho from the ACDF).
Do you just mean the harder you push yourself in general, or specifically in exercise? I'm having to be careful with that, because I notice if I exercise too vigorously, things tend to flare up (and I'm trying to lose weight here!)
Both, actually. If I just push myself too hard in general I get exhausted. If I push myself too hard physically, I am in a ton of pain. Oh, how I miss the days of my muscles being the only thing hurting from too much exercise........0 -
I do take D-Mannose daily and I have been working on my diet - but it's hard since no one has the same triggers. I am also doing PT once a week (that's an experience that took me a bit to get used to) I have to get back into the gym, but the harder I press myself the worse I feel (not to mention, I haven't been fully cleared by the Ortho from the ACDF).
Do you just mean the harder you push yourself in general, or specifically in exercise? I'm having to be careful with that, because I notice if I exercise too vigorously, things tend to flare up (and I'm trying to lose weight here!)
Both, actually. If I just push myself too hard in general I get exhausted. If I push myself too hard physically, I am in a ton of pain. Oh, how I miss the days of my muscles being the only thing hurting from too much exercise........
Appreciate knowing it's not just me- I hadn't really found much in my research about the effects of exercise.0
This discussion has been closed.
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