anyone here have chronic IC?

[pen2005pal]

I was wondering if anyone here has chronic IC besides me? Is there anyone else that has tried medications and several therapies and still nothing really worked?

[glitteringglory]

I'm in the same boat as you. Sorry....having it chronically will almost make you crazy. It seems nothing helps for me-change of diet or self starvation (I tried this, too), and many different treatments and meds. Now, I just take hydrocodone for the pain and gabapentin to get me through the night. I hope things change for us, someday!!!

[Thingone]

I have been in a flare for two years. I just started seeing Dr. Evans. I hope his treatment plan helps. I have been going to physical therapy for a year without any reduction in my pain level.

So far two of the medications are causing issues.

1) I'm going to half to stop taking Gabapentin. I'm having rash issues on my legs. The more I increase the dose, the more of the red rash I get. Anyone else using Gabapentin develop a rash. I have the rash on the bottom half of both legs. I'll half to call the Doc.

2) Valium Suppositories—need to find a Pharmacy that can produce one without making me flare big time.

I had a total Hysterectomy in 1992 for Endometriosis. I was 21 years old. I had ten surgeries before then, and one after. The last being in December of last year to remove pelvic adhesions and cystoscopy with Hydrodistention of the bladder.

I have been in pain since I was a young teen. The doctors would tell my mom it was in my head, I just needed more attention. To all the parents out there—listen to them. It wasn't in my head. I also think I had IC as a teen as well.

What has helped—Elmiron after taking for 6 months helped with urgency and the dreadful morning wake up pain when the bladder was full.

Still looking for relief.

[statesboro]

I am gonna state that I have not gotten much success, or hardly any, over the years. Of course, I don't have all the pain, but the frequency still sucks. Also, I am gonna state that I actually thought all IC was chronic.(like why it is a chronic illness) OK. Chronic has to do with long lasting. Geez! Oh! There is no known cure; therefore, we all have a chronic illness. OK. You can realize I did notice you were asking if some others have not had success with any treatments so far. I started by giving a statement on that. OK. I am gonna take my weary self to bed now. Yep!

[Mothergoose]

I agree with statesboro, and I see too you are asking if people find releif from their symptoms. Mine wax and wane, I figure I have had IC all my life. I am at the point now it still controlls everyday of my life but without treatment I would have no life.

I am way better than I used to be but I feel my IC is worse than it used to be, but when I was fist given the diet I was told just don't eat anthing citrus and you will be fine. I didn't know any better i had not found this site yet.

I now at least get some good peroids of time, I think if I could figure out how not to get UTI's so frequently I would feel not too bad most of the time.

To tell the truth I still have to weigh the pros and cons everyday about what I am going to to and will it aggravate my IC. but you do learn to live with it and for the most part with good treatment things do improve.

MG

[ICNDonna]

Interstitial cystitis is a chronic condition. I have more good days than bad, but I know that the symptoms can and will return. The only way I can cope with having IC is to concentrate on enjoying the good days --- it makes the bad ones easier to deal with.

Hang in there. It can take time to find the most effective treatments in any individual case, but most of us do find them --- and most of us feel good most of the time.

Warm healing thoughts headed your way,
Donna

[pen2005pal]

Well it's good to know that there are others who have the same symptoms I do out there. Some people do not really have it chronic (even though it is a chronic condition). I know some who just take one pill and they are fine. For these individuals they do not suffer in the same manner. So it's good to know there are others out there who share this burden with me.

[Thingone]

I just love this website. When I feel down and out from my pain, and all the side effects that it ripples in my life. I visit this site, and I find hope, compassion, tons of information, from a wonderful group of people. Thank you ICer's for being here.

[glitteringglory]

My urologist said there are 2 kinds of women with IC. Some that find treatment to make it better and others that they try EVERYTHING & they still hurt and don't get better. I fell into the latter group.
As much as I hate IC and it effects much of my life, I realize I have learned something from it. I am compassionate and caring to others with chronic conditions. If someone has fibro or some other chronic problem, I can truly relate and edify and encourage them. I know I would not be like this without the IC problem. I was a very self centered person before these health issues. It has made me grow in ways, only suffering can.
So, I am thankful for the experience (if it will help others) but praying it is short lived and for relief for all of us. Love to my IC sisters-whether you have improved or like me, are still looking. (hugs)

[ABliske]

I feel the same. I've had chronic pain for 5 years. I tried a whole TON of different meds, instills, capsacian with a hydrodistention, the diet, supplements, physical therapy, and more!!! I've spent thousands of dollars on all of this. I never had anything that helped me much. Now, I use MS Contin for the pain along with lidocaine (for the burning feeling) and occasionally baking soda with water. I still follow the diet (mostly) but it doesn't make me pain free - ever.
I was in so much pain that I would wake up and a few seconds later it would hit me and last all day and keep me up at night. I saw a show on tv once with a man with no skin. He talked about how he lived for the few miliseconds when he'd wake up before the nerve signals reached his brain to start causing the pain. It's really weird but I could relate to that!! I know I am lucky to have this and not his condition. It's just still hard.
Now, I have my pain killers but I am afraid that someday they might be taken away - like if my Dr. retires or something. I couldn't handle my life without them.
Hope all of you who deal with this chronically are able to find some type of relief.

[glitteringglory]

I find this guy absolutely encouraging-Nick Vujicic-to have such a health issue and still do the best he can-with a positive attitude (see link below). It makes me want to do my absolute best. I also had a hip replacement surgery 3 months ago. I could not get around much before surgery and a couple of months after surgery. It sure is hard running to the bathroom with IC pain when you can hardly walk and it always seemed like at the store, there would be cleaning signs on the bathroom. I remember wanting to cry from such a sign because it meant hobbling to the bathroom at the back of a store (thinking Wal Mart here) with my cane. I told my husband, something's got to give-I don't how strong I can be. I totally replied on strength from above to get me through it. I think I could have easily become depressed having all these health issues at just 34 and trying to raise 2 kids-my girls ages 8 and 10 years old. I had to choose to look at the bright side, which I admit is not easy at all! But it is the only way to get through trials. Thankfulness is the antidote of depression. I realize, every time I start to get down, to start making a list of what I have and what I am thankful of. It doesn't ward off the pain but helps deal with it a little better and to be somewhat content even in the face of adversity. It does help the pain from getting worse. I am one of those who gets worse quickly from stress. The stress makes my bladder throb even more. So, I have to learn to eliminate stress completely-and I am still working on this goal.
Also, I find these examples especially helpful, like Nick Vujicic. I hope you all can draw strength from this, too! :)

http://www.youtube.com/watch?v=H8ZuKF3dxCY

[theclownster]

If you truly have IC - I believe it's all chronic as IC is a chronic illness. I think what you are asking is if anyone else has found that the traditional treatments for IC do not work for you. I am lucky and feel blessed to report that I have adjusted to my condition and have a medication regimen that controls my IC symptoms. I am able to live a full life and as others have said, I have more good days than bad. It was a lot of trial and error in the beginning, but now I have a better handle on things.

Hope you find some relief soon!

Take care,
Jennifer

[stacyoigirl]

I feel the same way. I also feel like every procedure I try makes me worse. The urodynamics, the cysto/hydro, the botox. Nothing makes it better. I am running out of ideas. And my pain dr said I was taking too much percocet and that I need to regulate to two pills a day. I know that I should not take a lot of narcotics, but I do not understand the restrictions when I need them. I need some sort of relief, even if it is not total.

[blueberry72]

Right now I have to take weak opiate pain meds, albeit in pretty small doses, to control my symptoms. I basically have urgency from the moment I wake up until I am able to sleep if I don't take the pain meds. I get this incredibly itchy feeling in my bladder, and it builds to spasms. I really can't concentrate on anything or sleep and it drives me nuts to the point of tears. The only thing that eliminates it is the pain med. The chondroitin sulfate instillation feels nice, but doesn't seem to have a lasting effect. My histamine-blocker seemed to help for several days, but then stopped as well. The diet eliminates the burning while peeing, but doesn't do anything for my urgency. My doctor seemed to prefer me taking the pain med to starting Elavil. While I am happy the pain meds eliminate the urgency, I don't appreciate the side effects of reduced concentration and I am a bit concerned about developing a tolerance and working/driving while taking them. Anyway, I am pretty frustrated because I don't understand how I will be able to have a career with these symptoms/taking these meds. I am taking exams the next couple months and then will be faced with alot of decision-making. I am really jealous of all the people taking medication like Elmiron or the Valium suppositories that puts them in remission. I suppose I should just be thankful that the pain meds work, but fuzzy head effect really frustrates me.

[Mothergoose]

Just a suggestion I know quite a few people take probiotics with no problems, I can take them for a day or two then I flare, you may want to give a trial to each med you are takeing which can be stoped for few days and see if any of these are bothering you.

It maybe that you can take the item just not the brand you are on, for example I don't really think it is the probiotic, I think it maybe a preservative put with it to extend it's self life, same with the vit D.

Just an idea something you may want to look at.

Mg

[aleet7]

My records say that I have chronic IC. For some time I didn't have any relief...while taking Elmiron and several other things for IC. After having had my dx which is over 2 years now...I do have some good days. I think the longest time I was symptom free is for about 2 months. I think that once you continue the diet and meds...the bladder improves. It has to have time to get better before you experience really good days.

Best Wishes,
Aleet7

[valerie michele]

Yes, me too. Everyday I deal with bladder pain and each day it has been getting worse. I now have urethral burning everyday unless I take pyridium and only lie down. Just sitting is causing urethral pain as well as wearing pants. UTI's take only a couple of days to pop up if I do not take macrobid every night. I also can't walk for long because tight hip muscles have caused iliotibial band syndrome down both of my legs along with hip bursitis. I have also found out that not a single hospital in my state will do a cystectomy for an IC patient. I have been told not enough of them were successful. I am willing to gamble. I wan't to at least have a chance. Even if not all of my problems were solved I would think some could be. I asked one Dr. How can a person still have urethral burning if there is no urethra and the response was "I don't know". I am also hearing at hospitals that there are "two schools of thought regarding IC, one being that it does not exist." What that means? .... I don't know. I know it exists, I'm living it everyday.

[Daisy Mae]

oh Valerie that's horrible to hear, I'm so sorry! I do believe hydrodistentions work, I used to get them about every 18 months and they made a big difference. I haven't had one lately because other health concerns have made it where I just do what I can to function let alone go through any more treatments at the moment. Probably a negative attitude to have but I'm just sooo tired of being put through so much. I have also had DMSO and it's pretty rough on me for a while but then starts to work a little. Problem is, my hematologist doesn't like it because it messes up my blood coagulation and that one is a life-threatening disorder.
I hope you're able to find something that gives you relief!

[Bea]

I have had chronic IC for over 17 years with NOTHING working.. NOT a THING.. I am at my whits end.. I have tried handfuls of meds.. instills, surgery, interstim.. PT.. omg you name it, I have tried it.. I don't know what to do anymore and am at a total loss.. i am in pain 24/7 and nothing works.. it sounds horrible, but I have been trying very very hard to just deal with the cards I have been delt.. not sure what else to do.. Worst part is, I have severe anxiety caused by the IC, PFD, IBS, vulva, urethritis, Fibro etc.. and all the meds for anxiety just make my IC/retention issues worse.. so I can't even help that!!! Okay.. wow this is the first time I said all this in years.. felt good.. great to have a place to vent without being looked at like you are crazy!

[callie0767]

i feel for u bea i am the same way. ive had ic for 22 yrs and nothing has worked for me either. im in pain 24/7 and have tried most treatments.im on my second pt now and im not sure how many uros but going to yet a new one in nov. im also depressed a lot of the time because of the pain,lack of sleep the hopelessness. after being alone for 42 years i got married last year and because of the economy my husband has to work and hour away so i dont see him often. i feel like im back to being alone again. i wish i could help
but glad you got it out and it helped u feel better.i think u are about the same way i am severe cause for a long time and sick of it . feel free to email if u want to talk to anyone
courtenay

[aleet7]

Awe Bea! I'm so sorry that nothing seems to work for you! I totally understand the anxiety that goes along with this disease! I pray for a cure soon!

)))HUGS(((
Aleet7

[fallensupermom]

I was wondering if anyone here has chronic IC besides me? Is there anyone else that has tried medications and several therapies and still nothing really worked?

I was dx a little over a year ago and I'm just coming out of denile about my condition. Until about two months ago I truly beleived that this was all just going to go away.
now I'm in therapy for depression and trying to learn as much as I can about ic and the other related condition that I have been dx with and the ones my doc is sending me to new specialests for dx. I'm also just now starting to take a more active roll in my treatment choices. I'm allergic to elmiron and the atarax doesn't help me sleep it just gives me a sore throat not to mention the zanaflex that does nothing to control my bladder contractions. I'm in pain all the time my primary doc is sending me to a pain clinic and I go to my uro doc this thursday to see what they can do. I know that bladder washes are out because all that did when I tried it was make the pain worse and take me off my feet for two days. I'm starting to lose hope. I home school my to youngest children and I thankful that we have all day to do lessons because trips to the bathroom interfer alot. Keep your fingers crossed for me and pray for me real hard. I'll keep you in my prayers as well.

[Bea]

thanks for the wishes.. hugs to all of you.. this is definitely a lot to handle and deal with!!! Many prayers to all.. I will never give up on a cure!

[Byfaith71]

You are not alone it is very frustrating......down right depressing. I am in the same boat as you.
I was wondering if anyone here has chronic IC besides me? Is there anyone else that has tried medications and several therapies and still nothing really worked?

[Byfaith71]

To FallenSuperMom your story made me say woowww because it sounds like me. I was dx in 2007 and I too have been in denial about my condition. I am having back to back flares, i had a rescue treatment last tuesday and felt fine for 2 days then had another rescue treatment on Friday. My uro recommended DMSO so I started that this tuesday and still had a flare on wednesday so I ended up in his office Thursday and had a cystoscopy thursday afternoon. Zanaflex does not control my bladder contractions as a matter of fact it it relaxes my pelvic floor so much my uterus falls.....go figure. Getting up at night 20-30 times to go to the bathroom just for 2 drops is my biggest problem because I have to work. Needless to say I have not been to work much lately,

[nanawaggs]

Hi, ByFaith ~ I just wanted to let you know this is a very old thread, started in 2010 so you might not hear from those who wrote.

I'm very sorry you're having such a difficult time getting your symptoms under control. I don't know what happened to me, but I had severe pain with urgency, frequency, got up so many times at night that I was a walking zombie. Just this July I had another cysto which showed my very sick bladder but here I am 2 months later feeling like I'm in remission....as if this whole IC thing never existed. My husband and I are so amazed. My kids feel like they have their Mom back and I feel like I have my life back. The had me increase my instills to daily: heparin, lidocaine, kenalog, sodium bicarb and sterile water. They also started me on Atarax. I'm still sitting here amazed I can feel so good. I never think of going to the bathroom when I'm out now when I used to live in public restrooms if we went anywhere.

I just wanted to give you a little hope that there may be a treatment plan out there for you that works as good as this does for me. (of course I'm still taking other meds daily, but absolutely no symptoms!)

Blessings that you feel better and get some comfort, inspiration, information and support here on the ICN.
Ginger

[Byfaith71]

That's great to hear Ginger. I was in remission for a while I had my first cystoscopy when I was 3 years old. I did not start having issues again until I was a teenager but I was not diagnosed until 2007. I don't see how you can stand a cath everyday it takes my uretha 2 days to get over having a treatment because the catheter gets hung up midway....thats very painful I HATE rescue treatments but I am praying that after these DMSO treatments I go into remission.