I.C

[nessa1970]

Does anyone have interstitial cystitis an type 1?
I’ve been suffering this for a while and was wondering if anyone had any suggestions re making it more bearable. I see my urologist 1st dec and we’re discussing more hard core options.
Hope everyone is well it’s been a while since I’ve posted been so busy with new job and managing bs etc which is going well see endo soon re pump looking like that’s a definite thing.

 

[Diakat]

No advice @nessa1970 but great to see you back and good need on pump. Hope all has been better for you lately in general. X

 

[therower]

@nessa1970 . Sorry no advice. Nice to see a positive, long overdue post from you.

 

[Indy51]

I think @Mep also has IC, but she is Type 2.

 

[DCUKMod]

Does anyone have interstitial cystitis an type 1?
I’ve been suffering this for a while and was wondering if anyone had any suggestions re making it more bearable. I see my urologist 1st dec and we’re discussing more hard core options.
Hope everyone is well it’s been a while since I’ve posted been so busy with new job and managing bs etc which is going well see endo soon re pump looking like that’s a definite thing.

Sorry about your IC, nessa. Unpleasant thing, for sure.

I just wanted to comment that it's good to see you posting with such positivity (ignoring the IC, obviously).

 

[Mep]

Does anyone have interstitial cystitis an type 1?
I’ve been suffering this for a while and was wondering if anyone had any suggestions re making it more bearable. I see my urologist 1st dec and we’re discussing more hard core options.
Hope everyone is well it’s been a while since I’ve posted been so busy with new job and managing bs etc which is going well see endo soon re pump looking like that’s a definite thing.

Hi Nessa - I have had it since mid 2013. I'm currently seeing my 4th urologist. I haven't had a symptom free day with it and I've eliminated a fair bit from my diet that I used to eat. I'm on amitriptyline for meds (I did try mirabegron and oxybutynin patches which did nothing). I'm also on baclofen for other conditions, so I'm sure that helps too. I currently see a pelvic floor physiotherapist for treatment. She has me using a TENS machine everyday (supposed to use it for 2 hours but I probably do less a lot of the time). I sit on ice packs a lot. I self catheterise myself too as I have retention from it. I always get abnormal urine test results as high leucocytes. I can't tell if I have UTI anymore either, so I'm getting regular tests done. How are you treating yours?

 

[nessa1970]

Hi Nessa - I have had it since mid 2013. I'm currently seeing my 4th urologist. I haven't had a symptom free day with it and I've eliminated a fair bit from my diet that I used to eat. I'm on amitriptyline for meds (I did try mirabegron and oxybutynin patches which did nothing). I'm also on baclofen for other conditions, so I'm sure that helps too. I currently see a pelvic floor physiotherapist for treatment. She has me using a TENS machine everyday (supposed to use it for 2 hours but I probably do less a lot of the time). I sit on ice packs a lot. I self catheterise myself too as I have retention from it. I always get abnormal urine test results as high leucocytes. I can't tell if I have UTI anymore either, so I'm getting regular tests done. How are you treating yours?

Hi
I’ve dont the amitripyline for two years no avail so stopped taking it and I’m going to ask for the other options which is the filling up of the bladder and the one we’re the put something up there in the bladder . I can’t handle much more of it to be honest. I’m doing so well with my diabetes an this I.c is an emotional sucker and constant pain an toilet visits it’s crazy
I’d rather have the operation that diverts the urine from the bladder . I will be most assertive about what treatments I want as it’s my body an Its affecting my day to day life. I’ll keep researching tho. Do you go toilet a lot I can go upwards of 30 to 50 times Ina day it’s bloody crazy. Poor us lol

 

[nessa1970]

Sorry about your IC, nessa. Unpleasant thing, for sure.

I just wanted to comment that it's good to see you posting with such positivity (ignoring the IC, obviously).

Thanks for that. It’s great having the bs in better ranges for sure actually feeling quite positive

 

[nessa1970]

No advice @nessa1970 but great to see you back and good need on pump. Hope all has been better for you lately in general. X

Hi an thank you
Yes looking forward to the pump help make life and work life a bit more stressful able as I’m doing crazy hours . So nice to be having some time to post and read on the site

 

[Mep]

Hi
I’ve dont the amitripyline for two years no avail so stopped taking it and I’m going to ask for the other options which is the filling up of the bladder and the one we’re the put something up there in the bladder . I can’t handle much more of it to be honest. I’m doing so well with my diabetes an this I.c is an emotional sucker and constant pain an toilet visits it’s crazy
I’d rather have the operation that diverts the urine from the bladder . I will be most assertive about what treatments I want as it’s my body an Its affecting my day to day life. I’ll keep researching tho. Do you go toilet a lot I can go upwards of 30 to 50 times Ina day it’s bloody crazy. Poor us lol

My frequency varies but I go an average of 17 times per day which the urologists I've seen say is way too much. Apparently normal is 4-7 times per day for most people. I also have the urgency, stabbing pain, aching, retention, and burning going on most days. This condition affects the entire pelvic floor for me... and they tell me I'm severely tight (no wonder as so much pain) and that's why I've been sent to pt. When I'm real bad the pain goes to my rib cage front and back and pain runs down inside of my legs. I've had a few cystoscopies where they could see bladder inflammation, I've had a couple of urodynamics tests, and one cystoscopy with hydrodistention which made me even worse for a bit afterwards.

Sorry to hear the amitriptyline didn't help. It helps me a small amount, but it's also being used for my GI problems so they won't just pull me off it (although they did several times and I was worse all round, so put me straight back on). I've been on nortriptyline previously for my GI problems, I believe others use this drug for IC too... maybe an option for you? I'm reluctant to try elmiron just because of the side effects I've heard and the cost. Some say it does nothing for them, others say it helps. I've also tried the desert harvest aloe vera capsules but they didn't make any difference for me. This disease sure is frustrating and difficult to manage. I find pain bumps up my sugar levels which doesn't help. It's nice to know there is someone else on this forum who has the same disease... lovely to meet you here.

 

[nessa1970]

My frequency varies but I go an average of 17 times per day which the urologists I've seen say is way too much. Apparently normal is 4-7 times per day for most people. I also have the urgency, stabbing pain, aching, retention, and burning going on most days. This condition affects the entire pelvic floor for me... and they tell me I'm severely tight (no wonder as so much pain) and that's why I've been sent to pt. When I'm real bad the pain goes to my rib cage front and back and pain runs down inside of my legs. I've had a few cystoscopies where they could see bladder inflammation, I've had a couple of urodynamics tests, and one cystoscopy with hydrodistention which made me even worse for a bit afterwards.

Sorry to hear the amitriptyline didn't help. It helps me a small amount, but it's also being used for my GI problems so they won't just pull me off it (although they did several times and I was worse all round, so put me straight back on). I've been on nortriptyline previously for my GI problems, I believe others use this drug for IC too... maybe an option for you? I'm reluctant to try elmiron just because of the side effects I've heard and the cost. Some say it does nothing for them, others say it helps. I've also tried the desert harvest aloe vera capsules but they didn't make any difference for me. This disease sure is frustrating and difficult to manage. I find pain bumps up my sugar levels which doesn't help. It's nice to know there is someone else on this forum who has the same disease... lovely to meet you here.

I’ve tried nortriptaline to no avail
Mine does come an go an sometimes it’s weeks gone and weeks there I get sore pelvic front lower back bladder filling up is painful vagina feels open and painful sex is painful feel pressure an Generally miserable
It’s depressing actually an when you work 50 hours an have a home to run etc it’s actually too much to bear.
This bout is especially sore
Did you have the henners lesions? I read to it could be auto immune which would not surprise me as I’ve had this as long as I’ve had the diabetes
So nice to to be able to have someone understand
Sounds like you have been thru the mill also with it. Stage four says neuromodulation , so I’m going to google that an botox

 

[librarising]

Obviously not an area of my experience, but whenever I look for a connection I do a search first for
Condition + carbs
If that doesn't seem to be the culprit I'll try
Condition + baking soda

On the diet front one lady found that fruit was a real trigger
http://eatbeautiful.net/2015/10/04/how-i-healed-my-interstitial-cystitis/
On the baking soda front I found this
http://cobf.websitetoolbox.com/post/cured-at-last-and-it-was-easy-4820798
https://www.dailystrength.org/group/interstitial-cystitis-ic/discussion/baking-soda-to-ease-flare-up

I'm a great believer in baking soda as it reduces acidity and acid-based inflammation (any -itis is inflammation)
It cured my gout and keeps it away.

Medicine will NEVER promote baking soda as there's no money to be made, but self-experimentation is cheap and easy.
Geoff

 

[Mep]

Obviously not an area of my experience, but whenever I look for a connection I do a search first for
Condition + carbs
If that doesn't seem to be the culprit I'll try
Condition + baking soda

On the diet front one lady found that fruit was a real trigger
http://eatbeautiful.net/2015/10/04/how-i-healed-my-interstitial-cystitis/
On the baking soda front I found this
http://cobf.websitetoolbox.com/post/cured-at-last-and-it-was-easy-4820798
https://www.dailystrength.org/group/interstitial-cystitis-ic/discussion/baking-soda-to-ease-flare-up

I'm a great believer in baking soda as it reduces acidity and acid-based inflammation (any -itis is inflammation)
It cured my gout and keeps it away.

Medicine will NEVER promote baking soda as there's no money to be made, but self-experimentation is cheap and easy.
Geoff

Yeh baking soda is just a reliever that some people use. I personally can't use baking soda as I have hypertension.

 

[Mep]

I’ve tried nortriptaline to no avail
Mine does come an go an sometimes it’s weeks gone and weeks there I get sore pelvic front lower back bladder filling up is painful vagina feels open and painful sex is painful feel pressure an Generally miserable
It’s depressing actually an when you work 50 hours an have a home to run etc it’s actually too much to bear.
This bout is especially sore
Did you have the henners lesions? I read to it could be auto immune which would not surprise me as I’ve had this as long as I’ve had the diabetes
So nice to to be able to have someone understand
Sounds like you have been thru the mill also with it. Stage four says neuromodulation , so I’m going to google that an botox

Yes it is sure painful Sorry to hear the nortriptyline didn't work either. It's hard finding something that works for this disease. What works for some doesn't work for others. As with diabetes, there are claims to have cures, etc. I know people can go into remission with it, but I've not experienced that. Some have had long periods of remission and then it comes back with a vengeance Also what is frustrating to hear is people who have had their bladders removed report they're still in pain... not good. The suicides I heard about since I've had it have been disturbing too all because people aren't getting pain treated and docs are pulling back on pain meds in some places.

I don't have hunners ulcers, I've read only a small percentage of people have those. It's definitely chronic for me though and if I eat or drink the wrong thing I know about it... symptoms really ramp up. Also I find too much activity also makes it worse. If I don't void at least every hour I also get worse. So frustrating. I'd love a symptom free day, it would be nice. We're all different though as I've discovered from reading experiences of others with it.

 

[nessa1970]

Yes it is sure painful Sorry to hear the nortriptyline didn't work either. It's hard finding something that works for this disease. What works for some doesn't work for others. As with diabetes, there are claims to have cures, etc. I know people can go into remission with it, but I've not experienced that. Some have had long periods of remission and then it comes back with a vengeance Also what is frustrating to hear is people who have had their bladders removed report they're still in pain... not good. The suicides I heard about since I've had it have been disturbing too all because people aren't getting pain treated and docs are pulling back on pain meds in some places.

I don't have hunners ulcers, I've read only a small percentage of people have those. It's definitely chronic for me though and if I eat or drink the wrong thing I know about it... symptoms really ramp up. Also I find too much activity also makes it worse. If I don't void at least every hour I also get worse. So frustrating. I'd love a symptom free day, it would be nice. We're all different though as I've discovered from reading experiences of others with it.

I don’t no what triggers mine or what makes it worse really
Sounds to me like there’s not much that can be done
Try this try that etc an a lot of the suggestions are not great for diabetes it’s almost like drink water have veges meat that’s it
Even then it’s not gone
This flare up is depressing me and it’s annoying too
Like you going to the toilet often and it’s a relief for a few minutes then it starts filling up again
I try hold off like they say to do but it’s torture

 

[Mep]

I don’t no what triggers mine or what makes it worse really
Sounds to me like there’s not much that can be done
Try this try that etc an a lot of the suggestions are not great for diabetes it’s almost like drink water have veges meat that’s it
Even then it’s not gone
This flare up is depressing me and it’s annoying too
Like you going to the toilet often and it’s a relief for a few minutes then it starts filling up again
I try hold off like they say to do but it’s torture

I understand... it doesn't help my depression and anxiety. It's quite controlling and limiting. Also it's pretty hard to do things when all you want to do is sit on the toilet. Everyone likes to suggest 'cures' to me like why don't you drink cranberry juice, that will fix it... um no that will make it worse. geez. It's a case of trial and error and try to get the best help you can I think. At least know I'm here and feel free to vent to me anytime. Hugs.

 

[nessa1970]

I understand... it doesn't help my depression and anxiety. It's quite controlling and limiting. Also it's pretty hard to do things when all you want to do is sit on the toilet. Everyone likes to suggest 'cures' to me like why don't you drink cranberry juice, that will fix it... um no that will make it worse. geez. It's a case of trial and error and try to get the best help you can I think. At least know I'm here and feel free to vent to me anytime. Hugs.

Thanks Mep you too.
I’ve printed tons of info I’m writing notes and counting toilet visits etc for my app with urologist this Friday. Going armed and ready to get down to some solutions, trial an error I no.
People have no idea of how debilitating it is actually and on top of diabetes, gosh forbid you have a high blood sugar day ... living on the toilet.. it’s very very frustrating and tiresome.
Killing yourself is totally a thought that passes your mind,,,,
But I’m determined to try everything I can.
Have s great day and thank you for sharing

This guy cracks me up

 

[Mep]

Thanks Mep you too.
I’ve printed tons of info I’m writing notes and counting toilet visits etc for my app with urologist this Friday. Going armed and ready to get down to some solutions, trial an error I no.
People have no idea of how debilitating it is actually and on top of diabetes, gosh forbid you have a high blood sugar day ... living on the toilet.. it’s very very frustrating and tiresome.
Killing yourself is totally a thought that passes your mind,,,,
But I’m determined to try everything I can.
Have s great day and thank you for sharing

This guy cracks me up

Haha... yes one determined dog too.

Oh yes, it's like a vicious circle isn't it. I know it's going to not be a good day when I wake in pain with sugar over 7 on my meter. Sometimes my sugar just stays on 11 or 12 when I'm in pain too... it did that last time I was in hospital and I hadn't even had anything pass my lips but water. The docs and nurses said your sugar is high.... well yes state the obvious. They couldn't blame anything but the pain though. That's the most frustrating thing for me I think is having painful conditions that affect my sugar levels.

I hope your appointment with your urologist goes well on Friday... always best to be armed. I have a new urologist and his focus is just on getting my retention treated for now.

 

[nessa1970]

Haha... yes one determined dog too.

Oh yes, it's like a vicious circle isn't it. I know it's going to not be a good day when I wake in pain with sugar over 7 on my meter. Sometimes my sugar just stays on 11 or 12 when I'm in pain too... it did that last time I was in hospital and I hadn't even had anything pass my lips but water. The docs and nurses said your sugar is high.... well yes state the obvious. They couldn't blame anything but the pain though. That's the most frustrating thing for me I think is having painful conditions that affect my sugar levels.

I hope your appointment with your urologist goes well on Friday... always best to be armed. I have a new urologist and his focus is just on getting my retention treated for now.

Yes it’s difficult with diabetes an having any other conditions as your bs are affected. I was so bad today I went doctors sn they put me on gabapentin 300 mgs three times s day
I’ve had my first one and I’m so hoping it helps. On the I.c forum many said it helped them so fingers crossed.
Looking forward to seeing urologist Friday an seeing what else we can do going forward

 

[Mep]

Yes it’s difficult with diabetes an having any other conditions as your bs are affected. I was so bad today I went doctors sn they put me on gabapentin 300 mgs three times s day
I’ve had my first one and I’m so hoping it helps. On the I.c forum many said it helped them so fingers crossed.
Looking forward to seeing urologist Friday an seeing what else we can do going forward

I hope it helps you. My first urologist wanted to put me on gabapentin, but my GP said no because I had a bad reaction to lyrica and apparently that is supposed to be well tolerated. Fingers crossed for you it works and you don't have to stop.