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Hi All,
I posted a thread a while ago, but here's a bit of an update on my situation. I haven't been diagnosed with IC officially as my bladder appears normal and fills to a normal capacity. No infection, no signs of endometriosis, had all sorts of tests, lived with this for well over a decade now. Basically it looks like I have some haywire nerve somewhere making my life hell. There's no infection, no ulcers, nothing out of the ordinary which has lead me and my doctors to think that this is so and treating that is all they can do. Some form of Neuropathic pain. At the moment I'm stuck in the house, can't work or get out and socialize. I'm getting quite depressed about it, I can't escape and take a break from my body. It's wearing me down. Pain is my main problem. That awful burning. Urgency and frequency to some degree, but I can deal with that. Burning I can't.
Things that used to help, no longer do like Baking soda and other alkalizers. Rarely they help. Sometimes acidic things help, but I can't rely on these, usually it makes things worse. Hormones make it go up and down too. Mid cycle and also when I'm on my period. I'm wondering, a doc prescribed some estrogen vaginal cream, has that ever helped anyones symptoms? Ovestin I think it was called. The only drug that has helped me where others haven't, was Lyrica. I felt great for about 3 weeks then it quit working which was hugely upsetting. It's considered the best drug out there at the moment, however my doc said just because it's considered the best, doesn't mean it's the best for me. Another drug might suit me better. However it's given some hope as maybe these sorts of medications are the way to go. Antidepressants (i've tried quite a few,) have had no effect.
Of the other Epilepsy/Neuralgia drugs I've tried so far, Gabapentin, no luck. Currently on tegretol, only been a week though, no change. The pharmacist said it can take 2-4 weeks to see an effect. I'll stick it out just to rule it out if there is no change. Anyone had any success on this? can't see much evidence in my searches though. Can anyone suggest some other drugs like this for neuralgia to suggest to my GP if tegretol's a no go? i'm on a waiting list for a pain clinic but god that could take forever at this point, i'm still only on a list to get an appointment, so it'll take a while to get in and see someone. In the meantime, it's trial and error, see what we can do.
I don't want to live in fear of toilets or be afraid to use one when we go out. Any advice would be appreciated, thank you.
I posted a thread a while ago, but here's a bit of an update on my situation. I haven't been diagnosed with IC officially as my bladder appears normal and fills to a normal capacity. No infection, no signs of endometriosis, had all sorts of tests, lived with this for well over a decade now. Basically it looks like I have some haywire nerve somewhere making my life hell. There's no infection, no ulcers, nothing out of the ordinary which has lead me and my doctors to think that this is so and treating that is all they can do. Some form of Neuropathic pain. At the moment I'm stuck in the house, can't work or get out and socialize. I'm getting quite depressed about it, I can't escape and take a break from my body. It's wearing me down. Pain is my main problem. That awful burning. Urgency and frequency to some degree, but I can deal with that. Burning I can't.
Things that used to help, no longer do like Baking soda and other alkalizers. Rarely they help. Sometimes acidic things help, but I can't rely on these, usually it makes things worse. Hormones make it go up and down too. Mid cycle and also when I'm on my period. I'm wondering, a doc prescribed some estrogen vaginal cream, has that ever helped anyones symptoms? Ovestin I think it was called. The only drug that has helped me where others haven't, was Lyrica. I felt great for about 3 weeks then it quit working which was hugely upsetting. It's considered the best drug out there at the moment, however my doc said just because it's considered the best, doesn't mean it's the best for me. Another drug might suit me better. However it's given some hope as maybe these sorts of medications are the way to go. Antidepressants (i've tried quite a few,) have had no effect.
Of the other Epilepsy/Neuralgia drugs I've tried so far, Gabapentin, no luck. Currently on tegretol, only been a week though, no change. The pharmacist said it can take 2-4 weeks to see an effect. I'll stick it out just to rule it out if there is no change. Anyone had any success on this? can't see much evidence in my searches though. Can anyone suggest some other drugs like this for neuralgia to suggest to my GP if tegretol's a no go? i'm on a waiting list for a pain clinic but god that could take forever at this point, i'm still only on a list to get an appointment, so it'll take a while to get in and see someone. In the meantime, it's trial and error, see what we can do.
I don't want to live in fear of toilets or be afraid to use one when we go out. Any advice would be appreciated, thank you.
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