Interstitial Cystitis???
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I have IC and used to have bad flare ups that lasted for days. Sooo painful. I've learned lots of water really helps and I keep AZO on me at all times in case I need it. There are some great herbal remedies that help. One of which has been great for me is Yerba mate. I also take a probiotic everyday. If you're having a bad flare up try baking soda mixed in water. It calms the pain quickly. Just don't do it top frequently as it has sodium. Good luck to you!0
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Giving this a bump to see if anyone is currently around with IC?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...... 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?0 -
I was diagnosed with IC ten years ago. It took me about 2 years to find the right combination of treatments because while my bladder showed very little evidence of the disease, my symptoms were significant. Now, however, I rarely dwell on it -- there's a daily awareness of it and what I need to do to avoid a flare, but it doesn't keep me from living my life. After taking a fitness hiatus during those couple of years, I started running and then moved on to weight lifting and body building. I'm convinced that physical activity and weight management are critical to managing IC as much as the other treatments.
Until a few months ago, I strictly adhered to the IC diet. I cheat every now and again but always go back to the diet if I feel my symptoms beginning to flare. It's important to research the information out there, follow the diet and keep pushing to find the right treatment for you. This may include medication, an Interstim implant for the frequency/urgency, and/or physical therapy. It's a lifestyle change but one you can adapt to in time. I honestly don't feel like I'm losing out on anything at this point. Oh, and don't forget your water!
Let me also warn you to take the IC forums for what they are and not get too down. I made that mistake early on and lived in fear. Don't.0 -
I was diagnosed with IC ten years ago. It took me about 2 years to find the right combination of treatments because while my bladder showed very little evidence of the disease, my symptoms were significant. Now, however, I rarely dwell on it -- there's a daily awareness of it and what I need to do to avoid a flare, but it doesn't keep me from living my life. After taking a fitness hiatus during those couple of years, I started running and then moved on to weight lifting and body building. I'm convinced that physical activity and weight management are critical to managing IC as much as the other treatments.
Until a few months ago, I strictly adhered to the IC diet. I cheat every now and again but always go back to the diet if I feel my symptoms beginning to flare. It's important to research the information out there, follow the diet and keep pushing to find the right treatment for you. This may include medication, an Interstim implant for the frequency/urgency, and/or physical therapy. It's a lifestyle change but one you can adapt to in time. I honestly don't feel like I'm losing out on anything at this point. Oh, and don't forget your water!
Let me also warn you to take the IC forums for what they are and not get too down. I made that mistake early on and lived in fear. Don't.I was diagnosed with IC ten years ago. It took me about 2 years to find the right combination of treatments because while my bladder showed very little evidence of the disease, my symptoms were significant. Now, however, I rarely dwell on it -- there's a daily awareness of it and what I need to do to avoid a flare, but it doesn't keep me from living my life. After taking a fitness hiatus during those couple of years, I started running and then moved on to weight lifting and body building. I'm convinced that physical activity and weight management are critical to managing IC as much as the other treatments.
Until a few months ago, I strictly adhered to the IC diet. I cheat every now and again but always go back to the diet if I feel my symptoms beginning to flare. It's important to research the information out there, follow the diet and keep pushing to find the right treatment for you. This may include medication, an Interstim implant for the frequency/urgency, and/or physical therapy. It's a lifestyle change but one you can adapt to in time. I honestly don't feel like I'm losing out on anything at this point. Oh, and don't forget your water!
Let me also warn you to take the IC forums for what they are and not get too down. I made that mistake early on and lived in fear. Don't.
Appreciate your experience and I'm hearing others like it- that after the initial period of getting things under control, it can be much more manageable (though I know it doesn't work this way for everyone). You're right- the forums freaked me out at first!
One thing I'm trying to work out is exercise. I'm on MFP primarily to lose & control my weight and have come to rely on exercise a great deal. Vigorous exercise (I primarily do low impact walking/aerobic dvds at home, but many are tough) seems to aggravate my symptoms. Has anyone else experienced this & how do you handle it?0 -
amyrebeccah wrote: »This is a question I plan to ask my doctor, but I just want to run this past some of you. I don't have a lot of the symptoms, but I ran past IC when looking up the symptom of pelvic pain right AFTER the bladder is emptied (I also have urine that seems to reflect some of the reported symptoms). I also have endometriosis (adenomyosis). Does anyone here run into that issue or have both IC and endometriosis?
You might try the ic-network.com forums... you'll likely find a lot more experience on there. In my research of IC, the symptoms can take so many forms, I wouldn't rule anything out. It's also known as Pelvic Pain Syndrome, indicating it can be a much more pervasive problem than just the bladder.1 -
I take Dmannose to prevent or cure urinary tract infections - is what you have similar to that? Dmannose is the effective ingredient in cranberry but much more concentrated and effective and without all the acidity. Might want to ask your doctor. But take antibiotics if the infection doesn't go away.0
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If it is similar to urinary tract infection then also make sure to avoid refined sugar, sweeteners, alcohol, caffeine, and excessive carbs. Make sure you eat adequate protein daily and take a multivitamin- both of these help support your immube system. I have a feeling I used to get chronic infections due to being protein deficient plus a few mineral and vitamin deficiencies I had. I haven't really had one since getting my nutrition on track, but I used to get them chronically before.0
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courtneyfabulous wrote: »If it is similar to urinary tract infection then also make sure to avoid refined sugar, sweeteners, alcohol, caffeine, and excessive carbs. Make sure you eat adequate protein daily and take a multivitamin- both of these help support your immube system. I have a feeling I used to get chronic infections due to being protein deficient plus a few mineral and vitamin deficiencies I had. I haven't really had one since getting my nutrition on track, but I used to get them chronically before.
Always good to rule out actual infection, but just as an FYI, from my research into IC, it's more characteristic for there not to be infection present (although the symptoms often feel exactly like a UTI). However, it's interesting that you mention Dmannose, because I have a friend who has been naturally managing IC for some time and this is one of the things she recommends. Something to do with helping to coat the bladder so irritants don't stick? And diet is also the most critical element to managing IC.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...... 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
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