Scared Newbie - Does IC get more severe over time?

[Natsy]

Hi there

I have only just found out about IC (on the web - doctors have never mentioned it to me!) and I am pretty sure that I may have it.

I just had a cytoscopy which didn't show anything but I am waiting on the results from the biopsy. I have had some endometriosis removed but there is still some on my bladder.

I started suffering from UTIs a few years ago. Then I started to get flares with no bacteria present in urine- but always blood (even when I have no symptoms). I managed to keep these at bay with prophylactic antibiotics for a couple of years but now I get flares from coffee, alcohol and sometimes acidic fruit and tomatoes.

This only started this year. Will it get worse or can you manage it? If I keep drinking coffee and alcohol will I do permanent damage and increase the severity of the condition in the long term?

I see that some of you suffer much worse symptoms than me and, while I am very grateful that my symptoms are nowhere near as bad, I am worried that they may progress to that level eventually.

I'd really appreciate your thoughts. The doctors just seem focused on my endo yet it does not effect my life as badly as the need to pee all the time!

Thanks

Natalie

[SharonA]

IC is not necessarily a progressive condition. Yes, it can progress in a small percentage of people, but that does not mean that it will do that with you.

I feel so much better than I did when I was first diagnosed 7+ years ago. I didn't think I would ever feel good again, but I do most days now. I do have an occasional flare, but they are no where near as bad as what I suffered with in the beginning. Usually, they last for only a couple of hours at the most. I have learned what to do to help me make them go away.

That brings me to your question about continuing eating and drinking what can bring on your pain..."coffee, alcohol and sometimes acidic fruit and tomatoes"...and if continuing consuming those things will cause permanent damage? That is a question that has been asked before and discussed a lot on these boards. To answer your question, I want to ask one. If you had an open sore on your hand, would you pour acid on it everyday? I don't think anyone would do that but, that is what is happening in your bladder when you eat/drink those things if they bother you. That is what makes sense to me and I will tell you right now, that I will not do that. I will not risk going back to the condition I was in before I discovered the diet items that can cause my bladder to be in pain. I am not very diet sensitive, but I do know that an orange will cause my symptoms to flare up. Oh how I miss them. But, I have come to the decision that there isn't an orange grown that is worth the risk.

I hope you do not have IC, but if you do, it does not mean the end of the world. There is every chance that you will find what helps you and you will be able to go on with your life despite having IC. It does happen. :):):)

[Natsy]

Thanks for your thoughts Sharon

You're right, I would definitely not put anything acidic on a wound I could see.

It is nice to know that some people learn how to manage their conditions. It seems that some people who post in these forums are really suffering. I thought my symptons were annoying enough but they are just minor compared to what some people are going through. Reading other people's experiences helps to put my own problems in perspective.

Thanks

Natalie

[dmarie]

I totally understand how you are feeling. I was diagnosed two and a half years ago and I was TERRIFIED!!!! I had awful pain and pressure all the time! Now I am symptom free some days, very low-level symptoms some days, and flare slightly around the time of ovulation and my period. I take Elmiron, amitriptyline, and hydroxyzine. I also did 10 weeks of heparin/lidocaine/sodium bicarb. instillations immediately following diagnosis. I am VERY strict about my diet. I don't cheat but I am still trying to discover my no-no foods. I lived on the strictest IC diet for over a year. I still have food phobia. I also did 3 months of physical therapy for all the tight muscles in my pelvis. All of these things have helped me tremendously....BUT.....it was a slow process and I can still see improvement as time goes on. I currently teach first grade, run my 7 and 9 year old to all activities, shop, cook, clean, and.....I even started jazz and tap dance lessons 2 months ago. I never thought I'd have my life back. I've had to make accomodations but I'm so thankful for the good days I now have and IC and fibromyalgia sure have put so many things into perspective for me! If you are diagnosed....stay calm, be patient (I know that is the hardest part) and believe that you will feel better!

Dawn

[Briza]

Hi and welcome :hi:
My IC progressed from mild to severe over a year's time, then kind of plateaued....then after diagnosis with diet, lots of water, lowering stress, and the right meds my symptoms subsided to very manageable levels and many days with no symptoms at all. There have definitely been ups and downs along the way but.... I have been in remission since Feb, no meds needed, although I still have to watch my diet for the few serious food triggers I have...and yep, coffee and wine are two of my biggest triggers so I still avoid those completely. Some food triggers that used to always bother me I can now eat in moderation without problems. Beer I am ok with, tho most would say no way, but it does not bother my bladder and of course I don't recommend it nor do I drink it while taking meds or if I am flaring. I had my first IC symptoms in Nov 2003. I do not have a history of UTIs.
I have to agree w/ Sharon....try the IC diet and cut out the alcohol and coffee, the coffee was hard to give up for me but I slowly phased it out of my diet by changing to decaf and drinking it w/ half milk, then only only on the weekends, then I gave it up completely...I know that is no fun but doing so this early on with your symptoms will give your bladder a nice break from further insults and hopefully at some point you can re-introduce things to your diet in moderation when your bladder is in better condition! If you find you cannot give up coffee completely all at once, there is a low acid coffee available here in the ICN shop and also I believe espresso beans, and the darker roast beans, are less acidic than the lighter roast. That is what I drank while phasing coffee out, but like I said, diluted with half milk.
Best wishes,Bri:)

[kadi]

My IC started hard & fast, I went from just fine one day to sick as a dog the next. It progressed over about 2 months until I was voiding 60x a day. Once I got on the diet & found medicines that worked, life got a lot better.
Now I work fulltime (I never stopped, but boy, was it hard for the first year!), take classes, exercise, travel. I have a pretty good quality of life again. I'm not in remission, I still have to follow the diet religiously, keep my stress down & take my medicines, but I'm well enough...

Wishing you better days soon,

[Tinkerbell23]

Hi there

I have only just found out about IC (on the web - doctors have never mentioned it to me!) and I am pretty sure that I may have it.

I just had a cytoscopy which didn't show anything but I am waiting on the results from the biopsy. I have had some endometriosis removed but there is still some on my bladder.

I started suffering from UTIs a few years ago. Then I started to get flares with no bacteria present in urine- but always blood (even when I have no symptoms). I managed to keep these at bay with prophylactic antibiotics for a couple of years but now I get flares from coffee, alcohol and sometimes acidic fruit and tomatoes.

This only started this year. Will it get worse or can you manage it? If I keep drinking coffee and alcohol will I do permanent damage and increase the severity of the condition in the long term?

I see that some of you suffer much worse symptoms than me and, while I am very grateful that my symptoms are nowhere near as bad, I am worried that they may progress to that level eventually.

I'd really appreciate your thoughts. The doctors just seem focused on my endo yet it does not effect my life as badly as the need to pee all the time!

Thanks

Natalie

Hey, your story sounds just like mine...except Ic came first then endo. i had a hard time getting a dr to believe my IC concerns, i kept saying that coffee made my pain worse.

Just because the cysto came back fine doesnt mean you dont have IC. lots of people have it and always come back w/ a normal looking bladder. I would def stop drinking coffee, not because it makes it worse, but it keeps you in pain!

My IC has gotten worse since it first started, by its really not considered a "progressive" disease and only like 2% of people have it progressive according to my dr. My dr does not believe mine is getting worse and my cysto has shown improvement, but my pain is worse and worse. my dr says its not worse, we just havent found the right treatment plan yet.

what you should do is find a urogyno who is familiar w/ IC and stay away from foods that bother you, you should check out the IC handbook on this site and read about the diet.

Good luck, and feel free to ask all the questions you want! Feel better!

[formom]

I was diagnosed last year after having my third and biggest baby. My Mother had IC, so when I was having systems, I booked an appt. with my Urologist right away and mentioned my Mom having it and he did testing. Sooo lucky for me, I was diagnosed quickly and started meds right away and definetly have more better days than not. It is alot of trial and error, so be patient and good luck to you!
Do not be scared of others stories, everyone is different and there are alot of people who are in remission who are not on these boards because they don't really need help as much anymore.

[Natsy]

Thanks so much for all the support guys. It is really reassuring to know that many people do get things under control.

I guess I am just getting used to it and feeling a bit sorry for myself that I can't seem to have all the foods and drinks that I love. (I could drink whatever I wanted a year ago!) It is also hard to tell people when they offer you things to drink (wine, soda, orange juice) as it is quite personal and you don't really wan't to go into too much detail. People don't really talk about their bladders in social situations!

I agree it makes work difficult. Like you, Dawn, I am a teacher and it's difficult to run off to the bathroom all the time.

Thanks for the advice regarding the coffee Bri. I know I should have just stopped drinking it but it is hard as I love it so much. But I like your plan of switching coffee and phasing it out so I'll give that a try.

I've seen a couple of uro/gynos and they always seem more focussed on the endo. I think that the bladder problems are worse to live with though but I guess their tougher to diagnose.

Thanks again - you're definitely making me feel a bit better.

Natalie

[ICNDonna]

I feel I need to chime in here. My IC was diagnosed in 1975 and has not progressed. In fact, I am much better than when I was diagnosed --- probably because I have learned which foods and drinks are a problem and which treatment options work for me.

Only a very small percentage of interstitial cystitis patients progress. Most, like me, feel good most of the time. I know it's a challenge, but believe me when I say that the diet is well worth the effort.

Warm hugs,
Donna

[Goldfinch]

I just want to put in a plug for being forthright when refusing drinks or food we can't eat. It helps me, anyway. As long as I knew her, my cousin (recently deceased--much older than me) refused offers of various foods. When queried, she graciously explained that acidic foods didn't agree with her. That said, no one would ever try to push something on her or, as some people are annoyingly inclined to do, say stuff like, "Oh, what's the harm? Have some wine, enjoy yourself!" Little did I know then, as I suspect now, that she may have had IC. When offered all kinds of drink options I simply say "Thanks, actually I'd love a glass of water." When pressed, I just tell people I am on a low-acid diet. If they persist, which they usually don't unless they are super curious, I simply say that acidic foods just don't agree with me, as my cousin did.

As for feeling sorry for myself I have a five minute pity party every single day. The other night I took a sip of my husband's red wine and just held it in my mouth to taste it before spitting it out, just like a wine-taster. How pathetic is that? It helped! I felt so stupid I didn't have a chance to feel sorry for myself, and I burst out laughing.

[LittleRed333]

Hang in there Natalie....

I was diagnosed back in April...and I am so much better than I was when I was first diagnosed.....I never thought back then that I could or would for that matter ever get better, but I have.....

My IC is under control and I am now able to eat some things I could not eat before....I just had some meatballs I made for supper with a ketchup(I love ketchup)base sauce and have no ill-effects from it.....

I do take Elmiron and Cytotec and that works for me....You will have to find out what works for you and your IC....I wish you the best....

And I understand the working situation...I am a nurse and for several months I was not able to work because of the IC....now that things are better for me I am back at work.....

Bless, Sharon

[curlycue]

I am a better person cuz of IC. Yea belive it. I feel better today then when I was dx as well that was in 1996. I had to go to Tijuana Mexico to be able to even be dx. It does get better. :pray::pray::pray::pray:

[firefly]

In my experience it can get better over time because you learn to manage it better. I spent the first year completely miserable, flaring all the time and had no idea how to cope. Now i'm nearly at the end of year two, my pain meds are much better, I don't flare as often and I am better at being nice to myself. My IC and other pelvic pain issues are still there, but I understand it a lot better.

I also have a great husband who is a huge support to me.

I wish someone had told me at the beginning how important it is to accept this condition (not easy when you have been disbelieved by doctors, work, friends and even family) and to take things a day at a time. I work in a busy job too, and eventually cut my working hours down to 30/week which has helped loads. I'm planning to go back to full time soon, so that shows how much better things are now!!

Be kind to yourself.

firefly xx