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Anyone with Interstitial Cysitis/Bladder pain?


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Hello All,

I have had ongoing bladder/pelvic pain for the last 9 months and was finally diagnosed as having interstitial cystitis. I am seeing a pdoc for the depression/anxiety associated with being in constant pain and wondering if anyone has had an experience similar to mine.

Because docs hate to give people Rx for narcotics my pdoc wanted me to try Cymbalta to help control the pain. I was up to 60mg/day and I think it helped some (but not a lot), but the side effects were to much for me. I was having a lot of sleep problems, anxiety, and in the mornings I couldn't wake up. Needless to say my career and emotional state were suffering (probably due to lack of sleep) so I went off of the Cymbalta.

So... Now I'm trying 150mg of Wellbutrin XL and it seems to be making the pain worse. I've had a symptom flare since I started it (2 weeks after I quit the Cymbalta) and the pain seems to crest and ebb with what I imagine is the peak plasma concentration - pain is worst in the afternoon.

The kicker is that I take Ultram to control the flares, which is pretty contra-indicated with wellbutrin (I think), but even that doesn't seem to be working now.

So I guess my question is, has anyone tried Wellbutrin for pain management and had it make the pain WORSE? Better yet, anyone have any ideas for meds that are good for IC pain? The tri-cyclics are out because of the weight gain; I'm in remission for an eating dissorder.

Sorry this is so long. Thanks everyone!

Shvlnose ;)

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Antispasmodics and anticholinergics could be tried to control your bladder pain.  (Ditropan, Urispas, and Levsin, for example).  Have you tried bladder analgesics (such as Pyridium)?

Oh, and I think Elmiron is FDA-approved for the treatment of I.C. (but might take 3-6 months to notice any effect whatsoever). 

You could also try a series of intravesical instillations of Heparin on a daily basis. The is based on information from Dr. Lowell Parsons at the University of California in San Diego. 

( http://www.ic-network.com/guestlectures/pa...transcript.html )

Then there is antihistamine therapy (using drugs such as Atarax) to help control the pain.

I have also heard of doctors giving instructions on how to place Marcain (a long-acting type of novocaine) into one's bladder for temporary relief of pain. 

------------------

Really, I am not making any of this up!

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Yep. The other Rx I take are ... Prilosec 20mg/day, Elmiron 200mg am & pm (been taking for 2 months), 900-1500mg Neurontin/day. and Ambien 5mg/night. I also have 0.25mg Xanax and 50mg Ultram as needed.

I recently stopped taking Detrol LA because it wasn't doing much for me. Pyrimidine doesn't help. I've also been keeping a food/pain/emotion journal for 8 months and can't find any relation to what I eat/drink. Ugh! I'm sorry, I sound like an unreasonable grump. I ask for advise and then all I can is "Nope. That won't work. Nope, not that either...)." Sorry about that.

This pain-thing has been the biggest pain in the ass (literally and figuratively). Doctors think "it's all in your head," you get conflicting diagnoses, and then the Dr.s in your area who really know how to deal with it don't take whatever type of  insurance you may have! ;)

I haven't tried the Atarax or any of the bladder instillations. The urologist I'm seeing wants to wait and see if the Elmiron works - which I'm willing to do. I'm just concerned with this latest flare because I felt like I was begining to improve prior to it.

Thank you all for your comments/encouragement, and I will check out the links that you posted! Keep the ideas coming though; just because one thing didn't work, doesn't mean the next thing won't.

Thanks again!

Shvlnose

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Oh, and if you have pelvic pain, there is the TENS treatment.  Transcutaneous electrical nerve stimulation. I don't know much about it, though.

*******

Well, the thing with I.C. is that even though the pain is "subjective" and so is the fatigue, there is a proven physical basis for it.  I mean, there is objective criteria used to make the diagnosis.

Of course, there are some people who don't take women's health problems seriously.  (I remember reading that I.C. mostly occurs in women, although men can have it, too).

Oh, and I believe that diet modifications are recommended---I believe no wine, aged cheeses, strawberries, cranberry juice.

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This pain-thing has been the biggest pain in the ass (literally and figuratively). Doctors think "it's all in your head," you get conflicting diagnoses, and then the Dr.s in your area who really know how to deal with it don't take whatever type of  insurance you may have!

I hear ya babe!

I have Polycystic Kidney Disease and deal with pain every day of my life.  I have to go to a pain clinic.  Which is just so much fun!  ;) Right now I'm dealing with a nasty kidney stone that's stuck and won't move.  It's been sitting in the same damn spot for months now, no matter how much water I drink.  And believe me, my nephrologist has me drinking three liters a day...which I do religiously.  The whole, "It's in your head" issue pisses me off to no end.  I'd love to see these doctors deal with what I go through or anyone else goes through.  You know what I mean?  Walk a mile in my shoes before judging me.  And as for the whole, I won't give you a script for narcotics...I know what that's like too.  That's why I go to the pain clinic.  If it comes down to that, for you, you have my total and complete support.  Hopefully the treatment you're on will help and you won't have to go to those measures.  If you're still on Ultram...remember to drink a lot of fluids.  That pill will dehydrate you and bind you up BIG TIME. 

You don't sound like an unreasonable grump to me.  Pain is a pain.

Keep us posted.

Elizabeth

Elizabeth

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Ugh! I'm sorry, I sound like an unreasonable grump. I ask for advise and then all I can is "Nope. That won't work. Nope, not that either...)." Sorry about that.

<{POST_SNAPBACK}>

I don't see you as a grump either. I see a woman in pain who can't seem to get any treatment to help. While it is true that woman visit doctors far more often than men, there is still a problem of sometimes not being taken seriously. Have you tried going to a female doctor? Whilst I don't believe that a doctor must have direct experience with an illness, sometimes a same sex docotr is a little more understanding and willing to do what ever they can to get to a better solution.

Erika

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Oh, yeah. The doctor thing... When the pain first started I saw all female doctors - PCP, OB/GYN, and Urologist. It was with one particular insurance company. The OB was great, the PCP and the Urologist sucked syphilitc donkey dong.  The Urologist is the one who told me back last October that I didn't have IC (because I wasn't waking up more that twice a night to pee) and that I needed to "get my anxiety under control."

Of course I was anxious, I was in PAIN!!!! Hello?!?!?!? So I was running around like a crazy person (I do have depressive/anxious/obsessive tendancies, but they're usually kept under adequate via CBT and talk therapy) trying to figure out what wrong. My PCP then tells me "OK, how about we make a standing appointment each month to check in on how you're doing? That way you can let go of worrying about this. I will take on your worry for you." Yeh. How about to take on my pain for me, lady?!?! Ugh! They also told me that sometimes modern medicine doesn't have all of the answers - which is true - but I had only been in pain for 2 months. I wasn't ready to give up.

So... I ended up switching insurance due to this. The first time I saw my new PCP (also female), she told me that my pain was real, we would find the cause, and what the other doctors told me was crap - "If they said medical science doesn't have the answers, it's only because they've stopped looking." I cried right there in her office. I called my husband from the parking lot and broke down with relief that someone belived me.

I ended up with a good OB/GYN who did laproscopic surgery to rule out endometriosis. Once we knew it wasn't that, we tried a test - a simple office procedure that could have been done easily by the first Urologist - it was a potassium sensitivity test. I tested possitive - thus it's probably IC. If my previous doctors had taken me seriously, I could have been 4 months further along in the process of healing.

At this point, I was begining to feel somewhat better - more in control, pain leveling out a bit, less and less use of pain meds. Then about the time I started the Wellbutrin, I began to have a pain flare and the Ultram wasn't working very well to bring the pain down (it had alway worked wonderfully in small doses before). I didn't take the Wellbutrin today, and so far, my pain level isn't climbing the way it has for the past 10 days. Of course that could be because it's the weekend and I don't have the stress of work today. 

I have an appointment with the pdoc on Monday. I'm going to ask him about all of this - the Wellbutrin, Cymbalta, posibility of Atarax (which I think is also used for anxiety some times), etc... We'll see how it goes. I may also make an appointment with the PCP to discuss this stuff with her. I probably just need to be patient and wait for the Elmiron to work. In the mean time, I'll try and control flares.

Thanks everyone for everyting! I appreciate all of the support. I'll keep you posted.

Shvlnose

Elizabeth - Hang in there! From what I hear, kidney stones can hurt worse than childbirth. Yuck! It sucks that you have one that won't move! You keep me posted too.

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  • 2 weeks later...

Hello All,

Just wanted to give an update. Spoke with the pdoc and even though Atarax can be used for anxiety, since I wanted to take it as part of my IC treatment he wanted me to talk to my PCP.

So... I saw her and it went well. She thought it wouldn't hurt to try it (and that it would probably help) so we're working on getting up to a therapeutic dose - this stuff can knock you out so you have to increase it kind of slow.

The pain flare came down after I stopped the Welbutrin. That doesn't mean there was a direct cause and effect relationship, but it is suspicious.

If anyone else out there has IC/bladder/pelvic pain issues and just wants to vent or gripe together - email me (or post). This ride started for me almost a year ago and I've only begun to feel in control of my life again in the last couple of months.

Chronic pain is definitely a pain - in all senses of the word!

Thanks everyone for everything - especially for the IC links. They were extremely helpful.

Talk to you later,

shvlnose

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  • 6 months later...

Well I am new here and I see this post is old but I searched the internet to find others who have IC I was just diagnosed 2 months ago but the symptoms were building for a few years. Anyway  I have been taking Elmiron for 2 months no change yet but I know it takes a while. I just wonder if anyone else can relate to the fact that we are supposed to drink more water yet I pee so much that I don't want to.  Also do you guys have pain all the time, I mean I will have at least two weeks of the month that it's awful? It feels weird ranting but I guess that is what this is for. HOpefully someone can relate?????

;)

Hello All,

Just wanted to give an update. Spoke with the pdoc and even though Atarax can be used for anxiety, since I wanted to take it as part of my IC treatment he wanted me to talk to my PCP.

So... I saw her and it went well. She thought it wouldn't hurt to try it (and that it would probably help) so we're working on getting up to a therapeutic dose - this stuff can knock you out so you have to increase it kind of slow.

The pain flare came down after I stopped the Welbutrin. That doesn't mean there was a direct cause and effect relationship, but it is suspicious.

If anyone else out there has IC/bladder/pelvic pain issues and just wants to vent or gripe together - email me (or post). This ride started for me almost a year ago and I've only begun to feel in control of my life again in the last couple of months.

Chronic pain is definitely a pain - in all senses of the word!

Thanks everyone for everything - especially for the IC links. They were extremely helpful.

Talk to you later,

shvlnose

<{POST_SNAPBACK}>

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Hello Charity7!

I can relate. I have now been on Elmiron for almost a year. It seems to have helped. It isn't like it just turned off the pain one day. I just noticed (though food/medication journaling) that my average pain level had dropped and I wasn't using pain meds as frequently. These days I'm able to make it through most of the month with out my Ultram or Tylenol 3. Right around my periods though I still need it. And it wasn't one of those - it only hurts when I urinate things. The pain was constant - sometimes achy/dull, sometimes sharp/pinching, but always there.

I also didn't notice the food connections right away either - at first EVERYTHING hurt, ALL the time, and nothing seem to reliably make it better or worse food wise. Now the background pain level is low enough that I can tell the minor variations due to food. If I eat something I'm allergic too (cow dairy and coconut), stuff with MSG or caffeine I can feel my pain/urgency level increase.

There is all kinds of stuff that can help you feel more in control of this - and I know how hard that is, especially at the begining. I can recommend www.ic-network.com and www.ichelp.com. Starting a food/med/activity journal can also help, just so you can see if there are any obvious pain triggers, meditation, support groups, etc... You also need to get a doctor that is willing to give you pain meds if you need them.

I know doctors get really freaked out precribing regular pain meds these days, but until you have a chance to get a little control over this, it's really the best way to get your life back and be able to function. It will take time.

Feel free to PM/email me and maybe I can think of some other specific things that might help.

Hang in there! It will get better!

shvlnose

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  • 1 year later...

Hello All,

I have had ongoing bladder/pelvic pain for the last 9 months and was finally diagnosed as having interstitial cystitis. I am seeing a pdoc for the depression/anxiety associated with being in constant pain and wondering if anyone has had an experience similar to mine.

Because docs hate to give people Rx for narcotics my pdoc wanted me to try Cymbalta to help control the pain. I was up to 60mg/day and I think it helped some (but not a lot), but the side effects were to much for me. I was having a lot of sleep problems, anxiety, and in the mornings I couldn't wake up. Needless to say my career and emotional state were suffering (probably due to lack of sleep) so I went off of the Cymbalta.

So... Now I'm trying 150mg of Wellbutrin XL and it seems to be making the pain worse. I've had a symptom flare since I started it (2 weeks after I quit the Cymbalta) and the pain seems to crest and ebb with what I imagine is the peak plasma concentration - pain is worst in the afternoon.

The kicker is that I take Ultram to control the flares, which is pretty contra-indicated with wellbutrin (I think), but even that doesn't seem to be working now.

So I guess my question is, has anyone tried Wellbutrin for pain management and had it make the pain WORSE? Better yet, anyone have any ideas for meds that are good for IC pain? The tri-cyclics are out because of the weight gain; I'm in remission for an eating dissorder.

Sorry this is so long. Thanks everyone!

Shvlnose ;)

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Yep. The other Rx I take are ... Prilosec 20mg/day, Elmiron 200mg am & pm (been taking for 2 months), 900-1500mg Neurontin/day. and Ambien 5mg/night. I also have 0.25mg Xanax and 50mg Ultram as needed.

I recently stopped taking Detrol LA because it wasn't doing much for me. Pyrimidine doesn't help. I've also been keeping a food/pain/emotion journal for 8 months and can't find any relation to what I eat/drink. Ugh! I'm sorry, I sound like an unreasonable grump. I ask for advise and then all I can is "Nope. That won't work. Nope, not that either...)." Sorry about that.

This pain-thing has been the biggest pain in the ass (literally and figuratively). Doctors think "it's all in your head," you get conflicting diagnoses, and then the Dr.s in your area who really know how to deal with it don't take whatever type of

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  • 2 months later...
  • 3 months later...
Guest Guest_Melissa_*

Hello All,

I have had ongoing bladder/pelvic pain for the last 9 months and was finally diagnosed as having interstitial cystitis. I am seeing a pdoc for the depression/anxiety associated with being in constant pain and wondering if anyone has had an experience similar to mine.

Because docs hate to give people Rx for narcotics my pdoc wanted me to try Cymbalta to help control the pain. I was up to 60mg/day and I think it helped some (but not a lot), but the side effects were to much for me. I was having a lot of sleep problems, anxiety, and in the mornings I couldn't wake up. Needless to say my career and emotional state were suffering (probably due to lack of sleep) so I went off of the Cymbalta.

So... Now I'm trying 150mg of Wellbutrin XL and it seems to be making the pain worse. I've had a symptom flare since I started it (2 weeks after I quit the Cymbalta) and the pain seems to crest and ebb with what I imagine is the peak plasma concentration - pain is worst in the afternoon.

The kicker is that I take Ultram to control the flares, which is pretty contra-indicated with wellbutrin (I think), but even that doesn't seem to be working now.

So I guess my question is, has anyone tried Wellbutrin for pain management and had it make the pain WORSE? Better yet, anyone have any ideas for meds that are good for IC pain? The tri-cyclics are out because of the weight gain; I'm in remission for an eating dissorder.

Sorry this is so long. Thanks everyone!

Shvlnose ;)

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Guest Guest_melissa_*

Hello All,

I have had ongoing bladder/pelvic pain for the last 9 months and was finally diagnosed as having interstitial cystitis. I am seeing a pdoc for the depression/anxiety associated with being in constant pain and wondering if anyone has had an experience similar to mine.

Because docs hate to give people Rx for narcotics my pdoc wanted me to try Cymbalta to help control the pain. I was up to 60mg/day and I think it helped some (but not a lot), but the side effects were to much for me. I was having a lot of sleep problems, anxiety, and in the mornings I couldn't wake up. Needless to say my career and emotional state were suffering (probably due to lack of sleep) so I went off of the Cymbalta.

So... Now I'm trying 150mg of Wellbutrin XL and it seems to be making the pain worse. I've had a symptom flare since I started it (2 weeks after I quit the Cymbalta) and the pain seems to crest and ebb with what I imagine is the peak plasma concentration - pain is worst in the afternoon.

The kicker is that I take Ultram to control the flares, which is pretty contra-indicated with wellbutrin (I think), but even that doesn't seem to be working now.

So I guess my question is, has anyone tried Wellbutrin for pain management and had it make the pain WORSE? Better yet, anyone have any ideas for meds that are good for IC pain? The tri-cyclics are out because of the weight gain; I'm in remission for an eating dissorder.

Sorry this is so long. Thanks everyone!

Shvlnose ;)

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  • 1 year later...
Guest tweety

Hello All,

I have had ongoing bladder/pelvic pain for the last 9 months and was finally diagnosed as having interstitial cystitis. I am seeing a pdoc for the depression/anxiety associated with being in constant pain and wondering if anyone has had an experience similar to mine.

Because docs hate to give people Rx for narcotics my pdoc wanted me to try Cymbalta to help control the pain. I was up to 60mg/day and I think it helped some (but not a lot), but the side effects were to much for me. I was having a lot of sleep problems, anxiety, and in the mornings I couldn't wake up. Needless to say my career and emotional state were suffering (probably due to lack of sleep) so I went off of the Cymbalta.

So... Now I'm trying 150mg of Wellbutrin XL and it seems to be making the pain worse. I've had a symptom flare since I started it (2 weeks after I quit the Cymbalta) and the pain seems to crest and ebb with what I imagine is the peak plasma concentration - pain is worst in the afternoon.

The kicker is that I take Ultram to control the flares, which is pretty contra-indicated with wellbutrin (I think), but even that doesn't seem to be working now.

So I guess my question is, has anyone tried Wellbutrin for pain management and had it make the pain WORSE? Better yet, anyone have any ideas for meds that are good for IC pain? The tri-cyclics are out because of the weight gain; I'm in remission for an eating dissorder.

Sorry this is so long. Thanks everyone!

Shvlnose ;)

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