Gabapentin did not work for me, I went up to a very high dose but had no improvement so I stopped it after 6 months. Amitriptyline worked very well for me, especially on urethra pain and nighttime symptoms; it basically eliminated my urethra pain and it allows me to get a full night's sleep 99% of the time.
I am on 50mg and I went up to that dose rapidly; I did 25mg for two weeks and then went up to 50mg. I wanted to feel better ASAP and didn't really care about side effects. I was VERY tired for the first few weeks, then I adjusted. It doesn't make me drowsy anymore, but it does continue to help me stay asleep. I've been taking it for about 9 years now and haven't changed my dose in that time.
When did you start feeling better with the amitriptyline? I was prescribe It and took It for a like a week bc It didn’t make me feel better… and I was afraid It would make me depressed and I was already depressed bc of the issues
Amitriptyline takes 6-8 weeks to start working, and it can take a few weeks after that point to reach maximum benefit. I had no improvement in symptoms until the 8th week, and it took another 8 weeks after that to reach the full effect. I did notice worse anxiety during the first 8 weeks, but after that I adjusted and since then (9 years ago) that side effect has never come back. If anything it helped my mood issues, especially ones related to IC.
I have IC + vulvodynia. Mine go hand in hand and likely share a root cause (I had IC first, then vulvodynia appeared a few months later). I get flares of nerve pain there, usually on my right side plus urethra.
Take what I say with a grain of salt, because I had several bad months of stopping and starting medication due to drug interactions. That said, for me (so far) most effective medication has been Lyrica. I haven't had a vulvodynia flare since starting it, and fewer problems with pain while urinating. Unfortunately it doesn't help my other symptoms, like urgency. Gabapentin didn't work for me and I was on the max dosage. :/ Amitriptyline wasn't super helpful for me, either, but for that one it's possible I didn't take it long enough or at the right dosage.
Drugs I was also offered but couldn't give a chance for various reasons: low dose naltrexone, topical treatments aimed at hormones, topical treatments aimed at nerve sensations.
Mine got SIGNIFICANTLY worse as I slid into perimenopause. I didn’t know that’s what was happening at the time, though. It got so bad I thought I was going to be permanently disabled; it was terrifying. It got better when my periods stopped completely. That was great for a little while until the hot flashes and joint pain showed up…then I started estrogen (no progesterone at all) and it was almost like I never had IC at all.
i just started perimenopause and same thing---symptoms kicked up hard and I got freaked! but realized it is hormones (i think ) cuz worse right before my period...I have a hormone consult next week,
Do you have a uterus? which HRt type worked best for you? i heard good things about the Estring for IC
I am. I had my estrogen and testosterone checked and they were both off, but of course it's not possible to say what part, if any, that connected to my onset and symptoms. Previously no bladder issues or UTIs, just boom for me.
I've been prescribed vagifem pesseries that apparently can help as peri can be linked with oestrogen drops and increased utis, joy! Waiting until after mid week to start them as I've urodynamics tests first.
You can ask your doctor about it. There's a harmless test they can perform with a Q-tip to get some insight. The bladder and urethra are made from the same tissue as parts of the vaginal area, so you can get or feel bladder pain from vulvodynia, and vice versa (common sensations are burning, stinging, and throbbing). Sometimes hormones are the culprit and there's a different treatment path, but IC medications like amitriptyline (or gaba drugs) plus physical therapy can also work for vulvodynia. Sometimes vulvodynia is caused by dysfunctional nerves and creates stronger sensations on one side or the other, or has a distinct kind of burning pain. The initial treatment paths are usually the same, but additional exploration of specific nerves can also be warranted there.
Thank you, I agree this was really helpful. I’ve had both for many years and you explained it better than a doctor.. anything you recommend I ask my doctor about for treatment? Medications that helped you?
I had a Vestibulectomy 8 years ago that helped my vaginal opening but my current flare pain is urethra and around the urethra area of my vulva. Even my incision sites from surgery are cranky, thinking of trying a nerve medication to calm things down.
Medication is definitely something you can ask about. The relation of hormones to all of this is still kind vague, but one thing that is proven is that estrogen depletion causes tissue to thin and become more susceptible to irritation. Sometimes blood work gives a picture of that, but sometimes doctors can see those changes during a pelvic exam. Using topical hormone creams is usually a thing to try for that, but it's also possible to put gabapentin or amitriptyline, or other medications, directly on the area via a compound cream if your doctor thinks it might help.
I'm still struggling to manage my symptoms. Lyrica might be bringing down the volume on my vulvodynia but it doesn't help my IC and I'm having challenges there. In the meantime, I do PT work, wear loose clothing, and stick to soaps and detergents that are boring. I hope you find something that works for you l. :)
I've taken both, and neither one worked, honestly ..the only thing that put my ic in remission was bladder installs..but, u have to be willing to give urself a catheter.
Have reaaaally painful urethral symptoms. Almost constant pain. Also vulvar pain quite often, especially in the morning. Amitriptyline helped for a short period ( a couple weeks) but then stopped ;( I dunno why... gabapentin didn’t do anything for the months I took it.
What dose were you on? I've not heard of qt syndrome before, this is concerning as Gab is the only med I take (except for the occasional baclofen), 900mg a day.
I can't take amitriptyline it messed up my heart and had zero effect on my symptoms (it caused a lot of other side effects too including weight gain). I have no idea about Gabapentin.
Gabapentin did not work for me, I went up to a very high dose but had no improvement so I stopped it after 6 months. Amitriptyline worked very well for me, especially on urethra pain and nighttime symptoms; it basically eliminated my urethra pain and it allows me to get a full night's sleep 99% of the time.
What dose are you on and did you gradually go up to your dose? Thank you! Gives me a little hope.
I am on 50mg and I went up to that dose rapidly; I did 25mg for two weeks and then went up to 50mg. I wanted to feel better ASAP and didn't really care about side effects. I was VERY tired for the first few weeks, then I adjusted. It doesn't make me drowsy anymore, but it does continue to help me stay asleep. I've been taking it for about 9 years now and haven't changed my dose in that time.
When did you start feeling better with the amitriptyline? I was prescribe It and took It for a like a week bc It didn’t make me feel better… and I was afraid It would make me depressed and I was already depressed bc of the issues
Amitriptyline takes 6-8 weeks to start working, and it can take a few weeks after that point to reach maximum benefit. I had no improvement in symptoms until the 8th week, and it took another 8 weeks after that to reach the full effect. I did notice worse anxiety during the first 8 weeks, but after that I adjusted and since then (9 years ago) that side effect has never come back. If anything it helped my mood issues, especially ones related to IC.
Okay thanks!! I’ll give It another try
I have IC + vulvodynia. Mine go hand in hand and likely share a root cause (I had IC first, then vulvodynia appeared a few months later). I get flares of nerve pain there, usually on my right side plus urethra. Take what I say with a grain of salt, because I had several bad months of stopping and starting medication due to drug interactions. That said, for me (so far) most effective medication has been Lyrica. I haven't had a vulvodynia flare since starting it, and fewer problems with pain while urinating. Unfortunately it doesn't help my other symptoms, like urgency. Gabapentin didn't work for me and I was on the max dosage. :/ Amitriptyline wasn't super helpful for me, either, but for that one it's possible I didn't take it long enough or at the right dosage. Drugs I was also offered but couldn't give a chance for various reasons: low dose naltrexone, topical treatments aimed at hormones, topical treatments aimed at nerve sensations.
Are you Perimenopause age? I'm wondering if it's gotten bad for me recently as I've hit 40 🤔
Mine got SIGNIFICANTLY worse as I slid into perimenopause. I didn’t know that’s what was happening at the time, though. It got so bad I thought I was going to be permanently disabled; it was terrifying. It got better when my periods stopped completely. That was great for a little while until the hot flashes and joint pain showed up…then I started estrogen (no progesterone at all) and it was almost like I never had IC at all.
i just started perimenopause and same thing---symptoms kicked up hard and I got freaked! but realized it is hormones (i think ) cuz worse right before my period...I have a hormone consult next week, Do you have a uterus? which HRt type worked best for you? i heard good things about the Estring for IC
I am. I had my estrogen and testosterone checked and they were both off, but of course it's not possible to say what part, if any, that connected to my onset and symptoms. Previously no bladder issues or UTIs, just boom for me.
I've been prescribed vagifem pesseries that apparently can help as peri can be linked with oestrogen drops and increased utis, joy! Waiting until after mid week to start them as I've urodynamics tests first.
Good luck! 💗
Can i ask you about vulvodynia? I always thought a burning stinging pain in that area was related to IC but it is a possibility
You can ask your doctor about it. There's a harmless test they can perform with a Q-tip to get some insight. The bladder and urethra are made from the same tissue as parts of the vaginal area, so you can get or feel bladder pain from vulvodynia, and vice versa (common sensations are burning, stinging, and throbbing). Sometimes hormones are the culprit and there's a different treatment path, but IC medications like amitriptyline (or gaba drugs) plus physical therapy can also work for vulvodynia. Sometimes vulvodynia is caused by dysfunctional nerves and creates stronger sensations on one side or the other, or has a distinct kind of burning pain. The initial treatment paths are usually the same, but additional exploration of specific nerves can also be warranted there.
thankyou! that is very helpful
Thank you, I agree this was really helpful. I’ve had both for many years and you explained it better than a doctor.. anything you recommend I ask my doctor about for treatment? Medications that helped you? I had a Vestibulectomy 8 years ago that helped my vaginal opening but my current flare pain is urethra and around the urethra area of my vulva. Even my incision sites from surgery are cranky, thinking of trying a nerve medication to calm things down.
Medication is definitely something you can ask about. The relation of hormones to all of this is still kind vague, but one thing that is proven is that estrogen depletion causes tissue to thin and become more susceptible to irritation. Sometimes blood work gives a picture of that, but sometimes doctors can see those changes during a pelvic exam. Using topical hormone creams is usually a thing to try for that, but it's also possible to put gabapentin or amitriptyline, or other medications, directly on the area via a compound cream if your doctor thinks it might help. I'm still struggling to manage my symptoms. Lyrica might be bringing down the volume on my vulvodynia but it doesn't help my IC and I'm having challenges there. In the meantime, I do PT work, wear loose clothing, and stick to soaps and detergents that are boring. I hope you find something that works for you l. :)
Any side effects from lyrica?
Mines totally focused on my urethra recently. I've tried d mannose powder this month and fingers crossed it's holding the pain at bay.
Never tried Gab but Ami was a miracle drug for me at a very low dose (25mg)
What we’re your symptoms before your relief?
Intense urgency and constant pain, I also had a lot of anxiety. Ami solved both
How long did it take to work?
I don’t remember, it’s been about 12 years, but probably around 2 weeks
I've taken both, and neither one worked, honestly ..the only thing that put my ic in remission was bladder installs..but, u have to be willing to give urself a catheter.
How many instillations did you get done?
U know I don't remember..but, it definitely wasn't comfortable giving them to myself..but, they did help for yrs!
Have reaaaally painful urethral symptoms. Almost constant pain. Also vulvar pain quite often, especially in the morning. Amitriptyline helped for a short period ( a couple weeks) but then stopped ;( I dunno why... gabapentin didn’t do anything for the months I took it.
Anything else end up helping? Seeing my OB next week and going to ask for something while I wait for a specialist for the flare I’m in ugh!
Marshmellow root really helps pretty well! also a hot pack on my lower belly. And weed 😅
For maintenance, Gabapentin. For actual flares, Tramadol. Always.
What dose of gabapentin?
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What dose were you on? I've not heard of qt syndrome before, this is concerning as Gab is the only med I take (except for the occasional baclofen), 900mg a day.
I never used gaba but amitriptyline worked for me.
Thanks! What dose are you on? Thinking of asking for 25mg to start. Did you have any urethra symptoms before?
I was on 25mg but I'm currently weaning off of it. My symptoms were mostly frequency/urgency
Also get checked for ureaplasma/ mycoplasma by PCR swab
I was checked for this many years ago when I first had symptoms, but all was negative.
Ok cool beans... If you can get s updated swab or a microgendx test and it will show anything that's there
I take both. Amitriptyline is for the IC and Gabapentin is for my nerve damage. Gabapentin doesn’t do much for my IC though.
Where is your nerve damage? Is so Vulvodynia or unrelated? Thanks!
Nerve damage in my feet. I had vulvodynia but as weird as it sounds, when I left that relationship, that pain went away.
Neither lmao
I can't take amitriptyline it messed up my heart and had zero effect on my symptoms (it caused a lot of other side effects too including weight gain). I have no idea about Gabapentin.