Can anyone help my horrible bladder pain??

[lhmm]

Hi everyone...
My name is Lauren and I am 39 years old and have been in a 2 month 24 hour flare:( I will try to make my long story short. I have sufered from frequency with urination most of my life but that was my only symptom. I never had pain until 1 year ago when I took some medication and my bladder reacted to it. My doc performed a cysto with hydro and diagnosed my IC. the hydro worked great for me and I was fine until 2 months ago when the PAIN arrived and has not let up. I had another hydro that didnt help and have been to the hospital 4 times for pain. I have tried Elivil and narcotics but I can not tolerate the medications even at the smallest doses. Tylonol,Advil --they make my bladder worse as well. I pee alot but my main problem is the PAIN. My bladder feels like it has just been beaten up and bruised and things I cant even describe but the pain makes me sweat and radiates everywhere. I am also having alot of burning in my vagina and it just feels like it is throbbing(a new symptom since this flare started)The strange thing is that when the hydro was performed--the doc said its capacity was fine and just a few pin points were found where as the last one --the findings were much worse and the pain wasnt nearly as bad??? I also just got my period back after loosing it for 10 years(due to my low weight)at the same time that the flare started? It is just agony all of the time and my screaming and crying is scaring my kids:(:(:( It hurts when my bladder fills and continues to hurt after I pee. In fact after I pee--i feel really sore. Does anyone out there have such intense bladder pain and what does it feel like to u??? I am now trying CystaQ because I cant take other meds and I am scheduled for DSMO but I am hoping a miracle will occur before than...
thank u for listening and if u can help me--I would so appreciate it:) Bless u all, Lauren

[twiggy]

I am sorry you are in so much pain. It is common with IC patients to flare during their period. So, hopefully, once it ends you will get some needed relief! I can't think of any meds as you seem to have suggested most of them. I like the playtex heating pads that you can attach to your undergarments for 12 hours at a time. They are very thin and not noticeable to anyone else. I find the constant heat relaxes my bladder muscles and brings relief. Take care, I hope you are feeling better soon!

[blondiecat]

Lauren{{{HUGS****** I know exactly how you feel. You might try using a heating pad on your bladder area and also call your doc's office. Heat sometimes helps me when I am flaring. Not a lot of advice I know, but I wanted you to know that you are not alone with your pain. :kissing:

[VickiB]

Hi Lauren,

I'm so sorry you're going through this much pain! It's especially hard when you have children who can't understand why Mom's so unhappy!

If you haven't checked out the IC diet, that might be a good place to start. While it doesn't seem to work for everybody, for me it was like night & day! I found the extreme pain I had been in was almost totally related to foods I would eat. You can find information on the diet in the handbook.

I know what you mean about really being sore after you pee, that's how it is for me too! -The throbbing too! It seems like emptying your bladder should make you feel better instead of worse!

I hope the DSMO brings you some relief. Again, please try the diet if you haven't already. Hang in there and hug those kids of yours!

Vicki

[traceann]

Hi Lauren! Vicki is right, if you haven't tried the diet, please please please try it! (I know the "beginning" list foods are depressing, lol, but it does get better!) I went through a month-long flare (just starting to feel somewhat "normal" the past day or so) and I have to say that I am convinced the diet is what is helping to keep me relatively comfortable! At first I felt frustrated wasn't sure it ws helping, but that only lasted a few days, after all I had aggrivated my bladder for so long (plus a UTI helped it along and ovulation then my period gave it extra fuel!), it took awhile to kind of calm down. It's not really fun, but it's not hard either, and the women here are like magicians in what they have come up with in terms of some yummy foods, always willing to give tips on what they have tried! It's great!

So, I hope you are feeling better soon, and you are not alone in this, at all. I fully understand how you feel, the frustration, the fear. UGH! I can remember lying in bed in pain, thinking, "how will I EVER function this way!!!???" I'd wake up with panic attacks for no reason, (Well, IC is a good reason!), wake up and cry cause the pain was STILL there and get depressed all over again. I have no children (yet) and am single, (I have my mom living with me, she's 73 --- she's worse than a teenager! :) ), and I know there were days I couldn't figure out how on this earth I was going to take care of myself, let alone have some little ones to worry about, you are one tough cookie!! And I have never liked to worry my mom, (she's the BIGGEST worry-wart in the world to the point she makes herself sick), so I kept most of what I was dealing with to myself (not easy to do when you want to scream and pull out your hair from pain!), but I was very short and grouchy. I kept reading here at this site all of the advice the ladies give, especially when they would say "chin up, it will get better, you will find something to work in your favor!". And I kept thinking, "yeah, right", but it's true. You will find what works, you really will. And when I miss what I can't eat, I just remember it's better that then the pain! (pain is a really great motivator!) Please take care of yourself and stop here often, you never know just what trick might work wonders for you!!!

Hugs and Warm fuzzies,
Tracey :)

[Katrina]

:welcome: to the ICN!
I am so sorry so many meds are hurting your bladder. You sound that like me you had the frequency forever....but when the pain came it cam full force. I believe my capacity was high for an ICer too even though my symptoms were major. For me treating the bladder pain means doing multiple things. I will take Prelief, a gas med, a presciption strength antacid, my pain meds, a antispasmodic, use methol topical rub, and alternate heat and cold....when I can I also use catnip that I grow....The link I gave you has a list of ideas that include brain control and other things...that I will do when I need to. I add a multiplf of little things together to fix big pain and it does help! I hope you get the relief you need!!
:grouphug:

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.