Common with IC to never have relief with symptoms constant and everyday?

[branmun]

I hope this does not sound like a redundant question from me. I read people writing about remission or that they having a new flare up. Does that mean that some people have days that they feel completely normal or does it mean that they are just doing better in terms of relief from their symptoms? My symptoms have been constant 24/7 (mainly urge to urinate) for the entire 5 months without ever feeling normal. Is it common IC to suffer constant symptoms everday with no relief? Are there people with IC that have symptoms less often like once a week or once a month? Thanks!

[RobinD]

Sorry to tell you, but I have symptoms too w/o any relief. Well, almost no relief, but I had IC for at least 10 years b/f diagnosed last year. I just think after I figure out my diet, find the right drugs, my symptoms will improve. But for now, I hurt most of the time. I may have a morning where I feel good, but very seldom feel good all day. This makes figuring out the diet very hard. I am just eating only what is on the safe list because I can't tell much difference. The other day I had horrible pain from a vitamin I took, I guess, but that is the only time I noticed any thing making me worse. Hope this makes sense. I seem to be rambling.

Robin

[leelee88]

Well speaking for myself, I do have some good days where I almost feel normal. But then there are days that I feel so bad I can't even get out of bed. I was just Dx last Nov, so I am still learning.. I do know that the IC diet helps me alot and drinking alot of water is very important.

I have been trying differant meds and am hoping I have the right combo now, I do believe that is very important..But we have to all remember as of right now there is no cure for IC, so there will be days of suffering. I have finally came to terms with that.. So I take one day at a time and pray the next day will be better then the day before..

I hope you find relief soon..:angel:

[kuntrygurl78]

I have a very mild form of IC. I can go weeks without any symptoms. Then bam..I eat or do something stupid and my body reminds me with pain and urgency that I have IC. Its different for all people.

I hope you start feeling better soon!

[megancolleen]

Wow--I didn't see this post and I just posted the exact same question. I feel a bit foolish now!

As I said in my own post, I have symptoms 24/7, every minute of every day, for the last 3 years. There are times when my discomfort is mild and there are times when it is fairly severe, but it is always, always there. I have never for a second not felt discomfort in my bladder since I've had IC.

A discouraging answer, I know, but at least you know you're not alone!

[Shannonmarie018]

I'm the same way. I could be lucky and go weeks without any really bad discomfort but I always have a weird lingering cramping feeling in my bladder that never really goes away. Maybe I won't feel like I have to use the bathroom constantly but when I do I'll have cramping when I urinate. Right now I'm flaring up really bad, I haven't felt this bad for 9 months. I think once I figure out what foods really bother me and get the right medications I'll start to feel some improvement. But yeah, I feel like it's never really gone. I just try to smile and live through it. I also just ordered the aloe vera from the ic shop and I'm hoping that helps. :angel:

[Briza]

My first year and a half with IC I had constant non stop symptoms that progressed from bad to worse with an unexplained complete 3 month remission in the middle of it all. Then it came back with a bang after the remission. Now after diagnosis, time, proper treatment, diet I have many days of no symptoms of at all, where I feel completely normal, many days of what I consider my "normal" everyday pain that I can control well now with my regimen, some days where I have bad pain which is also pretty well managed, and I also have flares which I consider as lengthy periods of an increase of pain and all my other symptoms that require me to treat myself with all of my meds round the clock for all my conditions.

[ICNDonna]

While I am always able to "feel" my bladder, most days I don't feel too bad. It did take me some time to find which foods and drinks are a problem and which activities I need to avoid, but most days I live a totally normal life.

My IC was diagnosed in 1975.

Donna

[kadi]

For several years I had some level of symptoms all the time. In the past few months, however, with a combination of medications & instillations & physical therapy, I've been able to have whole days without any pain or discomfort. And lately, it seems that I've been able to string several days together & have a good weekend or good week.

I guess what I want to say is that just because your symptoms are 24/7 now, does not mean that it will always be that way. It is possible to get better.

[soccermom32]

Hi :hi:

I suffered from Nov until this summer with constant pain. Recently though, I've been getting much much better and haven't had any pain. Maybe its a remission, but I switched my medications around and have noticed a big improvement. I'm even drinking coffee again and eating normally.

I didn't think I'd ever get better and I am, so there is hope for you too !! Its a learning curve until you figure out what your triggers are and what meds work best.

Good luck!

[sickofmybladder]

Hi - I am newly diagnosed (1 month) - but have had severe symptoms for at least 18 months - I did go into a remission for about 1 month prior to my diagnosis but it has been quite a while ago - I too have pain / discomfort on some level every day 24/7 -

I am keeping a pain/void/food diary - which has been very helpful when trying to determine why some days are so much worse than others.

I hope you get some relief soon.

[jen74]

I really think it depends of what is causing the IC for the specific person in terms of if it will progress, get worse, get better or wax and wane. I think there are several caused for IC, and each person is different. I have bad days, and then better days, but I always usually have some amount of pain all the time. RIght now, I am in quite a bit of pain, have been for the last week. This disease sucks, and maybe one day they will figure it out and be able to really treat it.
Jen

[Bessie]

I have severe IC and I have 24/7 pain. I have to take pain medication to survive. My pain is very intense. I feel like I live in my own personal h**l
I will be having the botox injections this month so I am really praying that I get some relief. That is just me and I know there are lots of people who go a long time without any pain or discomfort. I hope that is the case with you.

[hdb1982]

There are days my frequency changes but my pain only goes from bad to worse. My pain medicine is my life line. Without it I would not function.

[Agape]

Hi :hi:

I suffered from Nov until this summer with constant pain. Recently though, I've been getting much much better and haven't had any pain. Maybe its a remission, but I switched my medications around and have noticed a big improvement. I'm even drinking coffee again and eating normally.

I didn't think I'd ever get better and I am, so there is hope for you too !! Its a learning curve until you figure out what your triggers are and what meds work best.

Good luck!

:woohoo: :woohoo: I still have hope that I will feel normal again soon. I am still uncertain that I definitely have IC (I could be in denial), but may know for sure by Sept. 14th if the cystoscopy is a for sure thing. I don't seem to have pain since starting the Elmiron, but there is still pressure on my bladder and the feeling of needing to go. The best news was when you said you are eating normally again even drinking coffee. Do you think you were ever diet sensitive and how long did you stay on the IC diet??
I still think stress is my main enemy.

[mpizze619]

I've been in almost constant pain since Jan. I do have some days where the pain is only a 3 on a scale of 1-10 then for some reason which I havent figured out yet the pain escalates to a 9 or 10. Right now I'm at a 10 - I go for m installation tomorrow and I think I'll ask the Uro for some pain medicine - I can't take this!!!
Presently taking instals - once a week, prosed, elmiran, cymbalta, synthroid (for thyroid) and premarin

[Claredale]

I am in the severe stage of IC, so I take pain meds 24/7 and have alot of good days but I get tired out by the time I leave work. My nights aren't that great, but I just move along as best as I can. I am flaring now. I have my normal monthly appt tomorrow, so I am trying to get the time to fly by.

I certainly hope everyone gets to those great days very soon!

Tracey

[born2swim]

For me, I have not felt normal since the first sign of IC back in November. I have days where I feel a bit worse in that my urge gets so strong that it makes me nautious... but no... my urge never goes away. It is 24/7 and Atarax is the only thing to get me to sleep through the night. I was on 10mg and they upped me to 25mg recently because my sleep has been more distrubed. Sometimes the urge is so strong that I cannot fall asleep and I take 1/4 of my 5mg Valium (maybe 2 times a month I break down and use it... fear tolerance/addiction).

I guess my response is just to say that you are not alone. I don't really have pain (the burning, peeing glass, bladder spasm pain). I just have that God awful urge to urinate and it never goes away. My hydrodistention helped a bit and the Atarax helps me sleep. Other than that nothing helps (except Ultram takes the edge off, but I refuse to take narcotics for a long period of time).

So... I hope one day I will feel normal again. :pray:

[Claredale]

Born to Swim...Have you tried Rezerom yet? It helps you sleep and is not addicting. I haven't had any problems (weird dreams, sleep walking, getting up and doing odd things) like the other meds. I tried to clean my carpet with bleach while I was on Ambien. I didn't even realize it until the next morning when I saw that I ruined my carpet!!! I have been on alot of sleep meds, Ambien, Lunesta, etc. and my body was able to conquer each and every one of them! I have been on Rezerom for almost 3 months now. I still don't sleep the entire night, but I do fall asleep right away so I don't get up to go to the bathroom 10 to 15 times before I finally fall asleep. My urg/freq is usually only bothersome when I first lay down.

Tracey

[born2swim]

Tracey,
To be honest, I am afraid to try sleep aids. I was given Ambien. I filled it, but I couldn't bring myself to try it. I don't sleep bad enough anymore to try sleep aids. When that frequency is killing me (getting up every 5 minutes to pee before bed feeling), I take the 1/4 Valium. I am very drug sensitive. Upping the Atarax knocks me out for the most part. I know I wake up to void, but to be honest, I can't remember if it is 1, 2, or 3 times most mornings. So, I guess just upping the dose to Atarax to 25mg is enough right now. I am also taking med school classes and I am afraid to take something that could affect my concentration or whatnot. Yes, sleep deprivation affects it too, but I have had drugs cause more trouble that sleep deprivation. Shoot! I'm used to the lack of sleep, but when my IC was at its worst, I wasn't sleeping more than 2 hours a night for about a month. That is when I considered Ambien. I have heard good things about Rozerum (sp), but I'm still too afraid to try it!

[Claredale]

It took me a while to get used to the idea, but after everything else failed, I went that route. I know that meds are different for everyone. I just wanted you to know that Rezerom is one med that I don't feel groggy with. What's more important, it is not habit forming and you don't have to keep upping the dosage. Now you may hear me say in a month or so that my body has conquered another medicine. I have beeing dealing with IC causing insomnia for nearly 20 years. I actually have anxiety so bad when it is time to go to bed that I have to take something. I had a sleep study and it was determined that I was so afraid of the pain starting and the up and down all night due to urg/freq that I was a basket case. I literally stayed on my toilet and layed my head down on the ledge by my toilet for many nights and that was on Atarax, pain meds, muscle relaxers and meds for nerve pain.

I am glad that Atarax is working for you.

Tracey

[branmun]

Sorry to tell you, but I have symptoms too w/o any relief. Well, almost no relief, but I had IC for at least 10 years b/f diagnosed last year. I just think after I figure out my diet, find the right drugs, my symptoms will improve. But for now, I hurt most of the time. I may have a morning where I feel good, but very seldom feel good all day. This makes figuring out the diet very hard. I am just eating only what is on the safe list because I can't tell much difference. The other day I had horrible pain from a vitamin I took, I guess, but that is the only time I noticed any thing making me worse. Hope this makes sense. I seem to be rambling.

Robin

Thanks. I usually have good mornings too but then start to decline as the day goes on. Vitamins definitely make me worse. Crazy IC!

[branmun]

Well speaking for myself, I do have some good days where I almost feel normal. But then there are days that I feel so bad I can't even get out of bed. I was just Dx last Nov, so I am still learning.. I do know that the IC diet helps me alot and drinking alot of water is very important.

I have been trying differant meds and am hoping I have the right combo now, I do believe that is very important..But we have to all remember as of right now there is no cure for IC, so there will be days of suffering. I have finally came to terms with that.. So I take one day at a time and pray the next day will be better then the day before..

I hope you find relief soon..:angel:

Thanks. I like the background in your picture. I wish IC felt that peaceful.

[branmun]

Thanks. I've been trying to figure the diet thing out. Maybe if I get that worked out I can start feeling better too.

[branmun]

Wow--I didn't see this post and I just posted the exact same question. I feel a bit foolish now!

As I said in my own post, I have symptoms 24/7, every minute of every day, for the last 3 years. There are times when my discomfort is mild and there are times when it is fairly severe, but it is always, always there. I have never for a second not felt discomfort in my bladder since I've had IC.

A discouraging answer, I know, but at least you know you're not alone!

Glad you had the same question. I felt crazy asking it but I've gotten so many responses. So good to know I'm not the only one. Like your Drew Barrymore pic. Big Fan! I think that pic is from "Ever After"-love that movie!

[branmun]

Thanks to everyone that answered my post! I'm so thankful for the numerous responses-all that were so helpful. I hope those that responded see this "thank-you" post. I've been out of the computer world for awhile and I'm not sure if I'm pushing the right button to respond back to everyone. I apologize if I'm doing it wrong-hopefully I will get the hang of it soon.

[muxerr012]

I was recently diagnosed in July with IC when I had a cystoscopy at my GYN's office. He referred me to a specialist which I've put off seeing. I'm already taking so many meds now I can't imagine taking more. How do people manage these costs?! How do you stay on a heating pad all day and not work? I'm sorry I know I seem bitter and I am. Also scared and confused. This pain seems worse than the endometriosis I've had. My IC began within days of a parital hysterectomy and maybe I think the doctor knicked my bladder. The same GYN who told me how much blood I have in my urine and who showed me the cystoscopy pic full of enlarged blood vessels, nd then sent me to someone else. I'm on hormone patches, hormone cream, lorazepam for anxiety (once a day), lunesta for sleep, 2 steroid drops for severe dry eye, and just bought Prelief yesterday hoping that I'll be able to walk around and be normal today. My employers and my family don't understand and don't want to know. I'm having alot of pain right now and coffee was the only thing I wouldn't give up until this morning. I don't know what to do and feel pretty blue.

[ICNDonna]

muxerr: You were wise to give up the coffee. It's one of the worst irritants. Hang in there. It may take a while to find your own personal triggers, but I'm betting you'll feel better once you do --- and once you see a urologist and get started on treatment for your IC.

Sending healing thoughts,
Donna

[born2swim]

muxerr012,

I know you are in a dark place right now. We all have those moments where we want to cry about the status of our health and life. It got bad enough that I asked my doctor for an antidepressant. I can tell you that following the IC diet makes a tremendous difference for people. Having a good relationship with your urologist or urogynecologist is important. You need to get started on a treatment plan. Some people get relief fairly quickly, others have a longer road ahead. I sure hope you feel better soon! We can all relate to your feelings. That is perfectly normal after being dx'd with a chronic disease.

[Babs RN]

I have severe end stage IC(which is rare)and have symptoms of some degree 24/7, 365 days a year. I still work full time, am a single mom of a wonderful almost 7 year old with autism, and take each day as it comes. I also had endo and find the IC to be a lot harder to deal with. Hopefully you will find a treament plan that will give you back your quality of life.

Hugs,
Barb:hi:

[Agape]

"Babs RN" Wow...you make me feel guilty for complaining about my pain and depression. I don't know how you manage to be a single mom of a seven year old and work full time with this condition, as well as your other problems. You are amazing!!! My family is grown, I am married and only work part time, but still I've had a hard time dealing with this condition. I know it must take time and this is still really new to me...haven't had all the tests yet to be sure, but dr thinks it definitely is IC just from symptoms and PST test.

[Shannonmarie018]

Oh my gosh! I feel so bad for complaining about myself too, when you have it so much worse. My heart goes out to you and I really hope that you start to feel better soon. It's really a good idea to give up coffee, I know it's hard, but coffee is so bad for your bladder with IC. Have you tried the aloe vera tablets, you can buy them on this site. I take up to 6 a day with water and they really seem to be helping me and they won't react with your medication. It's hard for me to when I'm in pain to be working, I bartend and I'm on my feet for 8 to 10 hrs a shift and I just smile through it and I don't know how I do it sometimes. I really hope you feel better soon. I'd go see an IC specialist.

[muxerr012]

Thanks so much to everyone for replying to my pitiful post and for not judging me harshly. After reading many of your stories, I sure deserved it. I need to move on and get to work. I will make an appt with the URGOGYN name I was given and hope that he's a good one. I will study the do's and don'ts of the IC diet so I can get my bladder in a calmer state. If I want to feel better I have to work for it! Glad I'm not a lazy person, I just have a thing about doctors and a thing about taking all these drugs. I've been made to feel like a freak or a psych patient for over 4 yrs and I'm still pretty touchy. One more questiosn though....I wake around 3am and never get a full nights sleep. Has anyone had success with the Puroast acid free coffee that is sold in the ICN store? I just need 1-2 cups in the morning to feel human and ready to start my day. Is PUROAST SAFE? Thank you again for your replies and stories. I wish you all the very best and a good day today.

Gina
Arlington, Texas
:bow: