I don't mean to drag everyone down, but...

[ICLori]

Well, I can't help but notice...I've been here on the boards for awhile now, and I just feel like nobody ever really goes into full remission and leaves.

It seems like there are so many of us who have, for years, tried this and that, and many are deciding just to kind of live with the symptoms. And they will say "it's not so bad" but they still have flareups now and then, or they need pain pills here and there.

I can't find many people who just takes a pill like Elmiron or something and they have no symptoms anymore. I can only think of one person off the top of my head, she takes Elavil (a very small dose at this point) and has no symptoms whatsoever.

It just feels like there aren't many success stories, at least not how I would define success - living completely without symptoms.

I know many of those who have had their bladders removed live free of bladder pain now, and that's a success, but it's kind of a big surgery, and even then most of them seem to have infections or other problems that crop up now and again. So it's almost like trading one set of problems for another, at least that's how it looks to me.

I just have been feeling lately like none of us hardly ever escape this IC stuff.

Does it seem that way to anyone else, too?

Blessings,
Lori

[hoping4acure]

I believe it's just the disease.

I know I say I'm in remisson, but your right. I still do get flares once in a great while (like yesterday) but I'm not down and out like I was when I was first dx'd. I was in pain 24/7. In between hydro's I honestly do not have any bladder symptoms, BUT...I am on the algonot & I have just staring taking the hyaluronic acid. So, no I am not medication free, but I am symptom free. I don't think we are going to escape the IC stuff until they come out with a cure. I know how your feeling though. I was just saying to my husband...just when I thought it was over, I started getting flares again and that's when I went in for the hydro, and I know hydro's are not for everyone. They work for me. It's such an individual thing it's so frustrating to try to figure out.

[armslee]

Lori-

I would agree with you. I think that there are different severities for all of us. My pain has definetly gotten more tolerable with medication. I certainly have been able to have more of my life back, but I don't honestly believe it will ever be the life I used to know.

I am 33 years old now. I hope to have at least another 30 years left of my life and I want to be able to enjoy it to the best of my ability. Unfortunately there are times when things do seem quite bleak for me. I have just battled cervical cancer for the second time and am currently waiting for my body to be healed enough to undergo a partial hysterectomy. I have had to reduce my hours at work because I am in too much pain by mid-day to tolerate working full time and caring for my 7 year old daughter in the evenings when I get home. My pay has been cut by 25%. I have billing companies calling me wanting to know when I can pay my medical bills. I am afraid that I am going to lose my job when things are said and done.
I shouldn't have to live like this at 33 years old.

But, I do. And rather than wither away and die, I choose to fight this tooth and nail. If that means that my lifestyle will never be the same, so be it. As long as I can have some enjoyment out of life, watch my daughter blossom into a beautiful young lady and see the sun rise each morning, I will take whatever pills I have to swallow to make sure that happens. For me, that is my success story.

[hoping4acure]

Wendy...what a great post and God bless you. I can share what my husband said to me:

You can go on living or go on dying...kind of tuff love on his part because he knows that I am NOT a quitter. I choose to go on living, and as with you, If I have to take a couple of pills and do a hydro every year...so be it. I am living a normal life to my standards and there are people out there that are a lot worse off than myself.

Again, God bless and keep the faith.

[Sarojini]

Well... yeah. I am still not living a life that I would consider symptom-free, but then again I've accepted that may be the case now. To me, it's just been a life adjustment -- albeit a BIG one. When I was diagnosed, I guess I was unusual; I didn't have much grief or shock, since I pretty much already knew I had IC, and instead I said to myself, "Okay, well, we know now -- let's get on with it."

Yeah, that was hard at first, and even still sometimes I have my moments where I'm angry or sad about having to take medicines, having yet another doctor appointment, having had to learn how to self-cath when I was in my twenties, having to abstain when a nice red wine is ordered when out to dinner with others, or having a ball of pain in my pelvis one day when I was fine the day before.

BUT, I'm grateful I'm alive and spunky enough to GET mad about it. That drove me through the process of getting better medical treatment and the like... and now my symptoms, while not gone by any means, are so much more manageable than when I first visited these boards in '04.

I view these boards as a place to come for information and for strength during tough times -- and as a moderator, even if I'm feeling good, I visit often to try and answer a question here or there, or give a hug of support to someone new. That's what keeps me here -- it's not my symptoms, it's the people.

[ICLori]

Wendi, thank you for your inspiring post. You are a very strong woman not to let this disease defeat you. The fact that you soldier on each day in spite of the constant bladder pain is incredible!

But what I was trying to ask, was....is there ANYONE here who doesn't have bladder pain every day? Who has found some combo of meds or treatments that allows them to be pain-free most of the time if not all of the time?

Because I have bladder pain EVERY SINGLE DAY. At LEAST 12 hours a day, usually more than that. Often 24 hours a day.

What I am asking is...what I am seeing is that no one ever seems to get any better. Or if they do get slightly better, it's "oh, I'm only in pain 23 hours a day instead of 24." And everyone counts success as when they learn to live in spite of the pain.

It's not like I'm NOT living. I continue to do the housework and do a volunteer job and paint my paintings in spite of the near constant pain for the past five years.

But I can't imagine trying to work like this. Maybe I could do it if I had to.

So let me rephrase the question - is there ever anyone who has had daily bladder pain, every single day, who ever gets better to the point where they only rarely have pain?

I don't mean, better without pills or treatments. I'm assuming they have to take pills every day, like I do.

I just mean, is it possible to ever get better?

Because it seems to me like no one ever gets any better, no matter how many pills they take, no matter what they try.

Blessings,
Lori
P.S. and it's really easy for those of you who only have pain every once in awhile, to criticize those of us who are in pain almost all the time, by saying "oh get on with life already." You know what? I AM getting on with life, as best I can. But I haven't given up (yet) trying to get better. I'm not resigned yet. I guess what I'm trying to figure out, if there is any reason to even try IC treatments. Because they don't seem to ever work.

[graceimnot2096]

Lori,
I know that all of this stuff is hard to deal with, sometimes it looks so bleak and for awhile I wondered why God let me have this awful disease. I was actually very angry at God for awhile, then of course I felt guilty for being angry. Then a very good friend of mine told me that I didn't have to feel guilty about being angry at God because in his infinite wisdom he created everything including anger. He created us in his own image, so he was never fool enough to think that we wouldn't get angry at him. Depression is anger turned inward. I still get angry from time to time, but I think we all do.
I still don't understand why, but there are some things that I won't understand until I get to heaven and ask him. I do know that nothing, absolutly nothing happens in Gods world by accident.
I didn't know anybody like me until I found this web site. I thank God that he directed me to it because it really helps me to cope with this disease. It isn't so much what is said, it is more of what doesn't have to be said, and what I don't have to say that helps me the most.
These are the cards I was dealt, for a long time I felt like I was alone and had alot of the feelings that you do now, with Gods help and the people here I was able to come to terms with it and you will to. I can't speak for anybody else but I think that I can safely say that we are in your corner and you are not alone. I'll keep you in my prayers.

[hoping4acure]

Lori,

Actually, that is me. I honestly do not have any pain in between hydro's. For instance, I have a bottle of pain killers (with refills) that is like two years old, I never need them. Yesterday was a slip because I found out that the premarin I WAS taking causes me to flare. I hope this helps.

Just want to add...the reason I still come here is to help other people. I get such gratification from it. I enjoy supporting and making others feel good, and hopefully make a difference in their lives.

[sweetangel2080]

I think a lot have a lot more control over their symptoms and doing a lot better but sometimes people are scared to say they are in full remission.

I am better than I was last year as I remember a 20min drive would be difficult and used to pee every 20-30mins. A year on after cystistat and now on Elmiron can now do 2-3hours when not drinking much. A lot better but still have flareups if I am not careful etc.
Can't asnwer about the pain I'm afraid...
Even when I did have a short remission of 2 weeks with no symptoms I still came on here so maybe that is the case?
At least I hope so or my wait for Elmiron to help even more is gonna be fruitless!

[ICLori]

I'm glad to hear that many of you are quite a bit better than you were before...maybe there is still hope.

Sweetangel, I've heard the longer you stay on Elmiron, the more it helps you. I hope that will be true in your case.

Sigh...I guess that's what my problem is, I refuse to just accept that I'm going to have pain every day for the rest of my life. I don't want that. That's why I'm trying Cyclosporine-A now, to see if it will help. I am starting to think it's not going to help me, though.

Blessings, thank you all for your answers,
Lori

[Janie Miranda]

Lori,
I sympathize with your pain and hope you find something that will work for you. I know it must be horrible to live in pain all the time. I lived in pain with the IC for about a year before everything clicked and I went into remission. I had had really bad pain a few times a year for many years but it wasn't persistent until I got it and it stayed for a year. It was a horrible time and I didn't know how I was going to live like that for the rest of my life. My doctor put me on elmiron, hydroxyzine, vagifem (HRT) and diazepam for when things got really bad. I started the elmiron first and it helped a lot, then we added the hydroxyzine and that helped even more. Then came the hormone replacement therapy and within a few months I went into remission and could eat anything I wanted and was totally back to normal. I didn't know how much that had helped me until recently I had to go off of it. Now I am getting the frequency, urgency and burning again. Looks like I am going out of remission. I guess what I am trying to say with all this is that I hope and pray you will find some combination that will work a miracle for you like my combination of treatments did. I feel confident that when I go back on the vagifem I will get to feeing better again/

[ICLori]

Thank you, Janie, I hope that the Vagifem puts you back into remission very soon! I'm sure it will. I'm glad to hear that some of us hardly ever have pain!

I've tried so many things over the past five years, though, and there's not much left to try if CyA doesn't work.

And those things I once thought I might try someday - BCG and RTX - have been shown to be ineffective for IC.

So it seems like whatever research is done, just mostly shows that nothing works for IC, which has been my experience so far. It just gets kind of frustrating and depressing.

Blessings,
Lori

[superkitty]

Hi Lori,

I so know what you mean. Sometime sreading the boards can be so depressing because it seems like everyone is in pain no matter what they do. In fact I posted a long time ago something similar to what you said. And some people replied and told me to think about it that if someone is feeling better they are probably not thinking about their IC and therefore not posting....So yea there are people out there who are better but they are just not posting because they are lucky enough not to have to think about IC everyday.

Anyways as for me I would say (knock on wood) that I am in remission. Yes, I take many pills everyday but I rarely have symptoms as I finally found what combination works for me. I haven't had a flare in over a year and the only symptom I have is occasional frequency or pressure however it is not even close to what it used to be. I am able to eat or drink whatever I want, I work full-time, I can have sex with no pain and I can sleep thru the night.

So please do not give up hope. It took years for me to be able to feel this way. I tried so many pills that I took more than my Grandparents. lol. One of the pills I take is Elmiron and I can honestly say that the longer you take it the better you feel. I was tempted to stop taking it as I didn't feel better but my uro told me to stick with it and I did. I didn't notice it working till about 4 years into it. Yes thats a long time but it did start to work!.

Hang in there and if you need to chat send me a PM.

[ICLori]

Thanks, superkitty. I'm so glad it finally started working for you! That's wonderful! I took it for about two years and it didn't work for me...in fact my voiding diary showed it was irritating my bladder rather than helping it...but then the latest studies show only a minority of IC'ers are made better with Elmiron, so...I guess I was in the majority.

I am hoping so much the cyclosporine-A I'm on will eventually help me...

Blessings,
Lori

[Briza]

:grouphug:
Lori
I don't know how long you have been in pain, but I do understand how it feels to not see the light.:kiss: I was in constant bad pain for about 1.5 years and truly thought that it would never end and felt very close to losing my job and really didn't think I could continue working if things didn't change. I only have occasional flares and pain, now, and I hope that day comes for you, too. Like some of the others have said, I have had to make some lifestyle changes and while I was in denial for quite some time, it is now just the life that I have and I have had to accept that. I have kept up with your posts on the new meds you have tried and really admire how you have perservered through all that. I hope you find what works for you. I have a long list of meds below, but I don't have to take them daily anymore, just as needed. Will I always need them? I don't know. But knowing I have them, and that if I'm in pain, gives me a lot of comfort and peace of mind that right there in my purse are the things that make me feel better fast. Just recently found out that hunner's ulcers were burned off during my hydro Nov 2004. Maybe that's why I feel better. Maybe they'll come back. I'll deal with it when and if the time comes.
Best wishes...:angel:

[ICLori]

Briza, I'm so glad you are almost always pain-free now! That's wonderful! I hope that all of us can reach that point someday. It's been kind of frustrating to me to try so many things, and nothing works. Well, it's too soon to give up hope just yet on the CyA. Maybe in a few more weeks or months it will kick in.

Blessings,
Lori

[Briza]

Lori
I hope that it works for you. Give it time. You know we're all praying for you that you get relief soon.:grouphug:

[ICLori]

Thank you, Briza, I appreciate it. I will try to be patient.

Blessings,
Lori

[vm]

I am symptom-free most of the time. I usually say 95% of the time, but it's probably more like 98%???? I honestly do not remember the last time I was flared up. It's been this way for me for a few years now. I eat whatever I want, drink whatever I want, do whatever I want - and live very comfortably. I really do not have bladder discomfort now and haven't for some time. The combination of bladder meds I am on has been helping very much for the past few years.

Just a note - some of who who do feel better most all of the time often curtail how good we feel in posts b/c we don't want it to seem like we are rubbing people's faces in it. It's a delicate balance to tell our stories to give hope and then hold back a little so we don't seem like we're saying "everyone" will feel this way, or something is wrong if you don't, or we fear just looking like we're being braggy about it.

I made a promise to myself back in 2001 that if I ever found relief from my symptoms I would STAY here b/c I have seen people get better and disappear. I'm not saying that is wrong at ALL, but I wanted to be sure that some of the people who go into a "remission" are here to tell the story. I needed those stories desperately back then - it was all that kept me going.

[armslee]

I agree about things being frustrating and depressing.

I had a talk with my mother on the phone last night about how I may be losing my job very soon. I am trying to mentally prepare myself for this and fight it as much as I can. But the reality is that I work for a small company and since we have under 15 employees the ADA rules don't apply here.

I wished there were more who posted here that had real success stories. But I can't blame them. I would be out having the time of my life if I could. Until then, I will keep hoping and praying that the right meds will fall into my hands.

Peace to all of us :(

[ICLori]

VM, that's wonderful! That gives me hope that maybe someday I will find my miracle, too. Thank you for letting me know. I'm in a really down spot right now. I had really wanted this CyA to work, I was so sure it would work, and now....I don't know what to do next.

Armslee, I'm so sorry. I wish our country were more like European countries, where even if you are sick and disabled, you still are provided the basic necessities of life.

I hope that things work out okay for you somehow, and I hope that we all get a miraculous cure soon.

Blessings,
Lori

[traceann]

Oh Kim (vm) you said it just how I was thinking! That is how I felt/feel about the postings, there is a holding back factor sometimes for just the reason you stated. It is a delicate balance. There were some days in the beginning I wanted to hear all successes - those were my lifeline, my strength, my hope, and there were some days other's successes could make me feel so down, that I wasn't there yet. So, I try to not be the "look at me! look at me!" person, lol, but the more subdued person. :) And I too stuck around to help. I know how much that help meant to me when I was first diagnosed, and if I can pass something along to someone that makes them even a little bit more comfortable all the better!

Then for me, there's also the factor of my superstitiousness, lol. I don't want to jinx myself by saying the "R" word, lol. ;) Even though I have no symptoms and have resumed my old diet (albeit modified to the point of limiting quantities of foods - I am very conscious about quantity as I want to keep the feeling "good" going along.) That's also the reason I started on the Algonot, not because I really needed to "fix" anything, but since I'd stopped taking the Elmiron, I wanted some sort of "insurance" to keep things feeling good. I just never want the day I say "Hey, I'm in remission!" - followed by getting smacked with the symptoms back to square one, lol.

Hugs!!!
:)

[Katrina]

I know quite a few people in remission.....I can think of 3 right off the top of my head. I suspect that the majority of those in remission we don't get to know as well around here because they don't need us as much since their symptoms probably got diagnosed a lot earlier.

I myself think that IC wise I am doing pretty good. Most of my symptoms these days are from Pelvic Floor Dysfunction. I wouldn't admit this much but I can tolerate an occasional pizza and spaghetti without an increase in symptoms these days. I give Elmiron, time, learning a lot about IC, and alternatives a lot of the credit for getting me to this point. If IC were all that my problems were I think I would be living a pretty normal life since I think my IC is doing pretty well normally. Almost all of my flares these days start as an IBS flare or PFD flare that has gotten bad enough to make my bladder unhappy.


Lori, I believe that your days of symptom free life will come:):) I am hoping and praying for you!

:grouphug:

[Betsie]

Lori,

I first want to say I am sad to read that you are so down. I try to follow along (as much as I can comprehend ) your treatment protocols. I know you to be so passionate about your regimens and also, incredibly supportive to others wanting information from you. I am amazed at how much you are able to keep available for the many here also looking for their miracle. I hope that you are not feeling this is hopeless, perhaps it needs much more time.

I too am a success story and I am incredibly grateful. I have posted this here and there before, but my story is rather simple, as my only Rx for IC is Elmiron. Once in a blue moon I have that "twinge" that something may be happening, but I "water up" and have been lucky so far. I have been through an incredible amount of stress in the past 3 years and it amazes me that I still made progress.

For me, it is more about less energy...unfortunately I have battled another illness for the past year or more and am also now dealing with an excrutiating injury ordeal since March. Ironically it involves my sacrum, and it hasn't affected my bladder at all. It just drains me, so I hardly ever sign in.

I really hope that hearing from another person with really great success gives you hope. I am sad to hear you so down, because you are sooooooooooo supportive and informed. I hardly ever see an "inquiring mind" around here that you haven't taken the time to post to.

Keep up the hope, I am working on that for other things, but the IC is really good now. I hope this will be the way for you too. The elmiron took a long time, probably 18 months with an increased dose, so I hope you have dosage options and can find just a tiny bit of patience as well...it is so hard, I do remember that part.

[jah]

I had a painful bladder about 10 years ago for 2 or more months--had a urethral stretch and a cystoscopy with hydrodistention. They found nothing. One day I stopped thinking about my bladder. It was gone. For the next 10 years I continued to get UTIs every couple of years, but nothing like the PBS I had experienced. Then in April of 2006 the painful bladder syndrome reappeared out of nowhere. I am knocking on wood, but I think it went away finally this month. I sure hope so. I did have an in-office scope and the hydrodistention again and the doctor found no IC....but the pain was there nevertheless. I asked for Macrobid or Augmentin from my gynie and he obliged, and after 10 days of it--the painful bladder disappeared. I believe there are many out there that are suffering from infections that go undiagnosed because the bacteria has mutated from taking too many antibiotics. I did not make this up--I read this from many scholarly articles by good doctors. It worked for me--but I did not have IC. It is hard to imagine that you will be better--but you will....unless there is a physical diagnosis of IC--in that case there are medications that can treat the pain. Keep the faith--you will be better...it could happen tomorrow.:angel:



Wendi, thank you for your inspiring post. You are a very strong woman not to let this disease defeat you. The fact that you soldier on each day in spite of the constant bladder pain is incredible!

But what I was trying to ask, was....is there ANYONE here who doesn't have bladder pain every day? Who has found some combo of meds or treatments that allows them to be pain-free most of the time if not all of the time?

Because I have bladder pain EVERY SINGLE DAY. At LEAST 12 hours a day, usually more than that. Often 24 hours a day.

What I am asking is...what I am seeing is that no one ever seems to get any better. Or if they do get slightly better, it's "oh, I'm only in pain 23 hours a day instead of 24." And everyone counts success as when they learn to live in spite of the pain.

It's not like I'm NOT living. I continue to do the housework and do a volunteer job and paint my paintings in spite of the near constant pain for the past five years.

But I can't imagine trying to work like this. Maybe I could do it if I had to.

So let me rephrase the question - is there ever anyone who has had daily bladder pain, every single day, who ever gets better to the point where they only rarely have pain?

I don't mean, better without pills or treatments. I'm assuming they have to take pills every day, like I do.

I just mean, is it possible to ever get better?

Because it seems to me like no one ever gets any better, no matter how many pills they take, no matter what they try.

Blessings,
Lori
P.S. and it's really easy for those of you who only have pain every once in awhile, to criticize those of us who are in pain almost all the time, by saying "oh get on with life already." You know what? I AM getting on with life, as best I can. But I haven't given up (yet) trying to get better. I'm not resigned yet. I guess what I'm trying to figure out, if there is any reason to even try IC treatments. Because they don't seem to ever work.

[ICLori]

Thank you all so much for your kind words and encouragement, I really needed that now. I am so glad to hear that so many of you are almost symptom free most of the time. That really gives me hope. I hope that my miracle might happen someday too.

Betsie, I'm so sorry that you are dealing with another injury and illness on top of IC - I'm sorry that you aren't feeling well, I will keep you in my prayers and I sure hope you will be feeling on top of the world very soon.

Jah, I'm so glad you are feeling better and really cured - I hope this never comes back and that you never have to feel any bladder pain anymore.

Unfortunately, I do have IC - it was diagnosed a little over five years ago and I've been in pain most of those five years. My uro has said I'm one of the worst cases he'd ever seen, he calls me end-stage and he recommended bladder removal after all the standard treatments failed.

I have tried every treatment you can think of for IC (except botox, which doesn't have a great track record, and bladder removal) and a lot of treatments you might not have heard of, LOL. Nothing has worked for me.

And each day that goes by, since I'm on the Cyclosporine-A, makes me lose hope that this will work. I had such high hopes in the beginning - the studies looked so promising - but I think I should have felt some improvement by now, if this were going to work.

I'm staying on it, for at least six months, so I can say I tried. But I am pretty sure this won't work for me, at this point. And all that's left is a couple of treatments where one or two people got better, or something drastic like bladder removal.

Blessings, I hope everyone continues to be symptom-free, and I hope it happens for me someday too,

Lori

[Kara29]

Lori,

I've been where you are and have felt the same fear and emotions that you do. I still do. We are fighters and have to keep reaching for the top with this disease. Something has to come around the corner soon! I am sure there are meds that are about to be released from the FDA right now that we just don't know about.

Keep your chin up. People who never give up eventually find something or someone to help this dreadful disease.

Hugs to you!

Kara

[ICLori]

Kara, thanks so much. You know, I keep thinking about what you had done, and I tell myself, it's time, it's the sensible thing to do - but I'm really scared. I want to try every possible thing first...

I don't know how you stay so positive with all you've gone through - you are a great inspiration!

That being said, I need to wallow for awhile and grumble and moan, LOL. Sometimes I just need that. :)

Blessings,
Lori

[Butternut]

Hi all, I have not posted here for awhile because I have been living fairly pain free and it keeps me busier. I am still taking Cytotec and doing well except when I try a little catsup. Or sometimes coffee (rarely drink any). Or if I forget to take Cytotec, I then have a lower backache.
Good luck to all.
Lori, I will always appreciate you telling us about Cytotec.

[ICLori]

Thank you - I'm so glad you are doing well! I hope I will find my miracle soon.

Blessings,
Lori

[Trishann]

Lori, I hope you can find something that can help you. I don't think no one is feeling dragged down because of what you write. I think it is good that you can express your feelings because that is the most important part of getting better. Believe me, at one time or other we all have are days because we are just human. Lori, praying for you, and hope you will have more good day.

I hope you can talk with the doctor and see if something can be done.
Trishann

[ICNDonna]

One thing to remember is that people come and go on these boards. There are only a few who really hang around year after year. And for every person posting here that they are in pain, there are literally hundreds out there who have IC, but are not visiting the boards because they feel good and don't need the support found here.

I feel good most of the time. I stay around because I spent so many years feeling like I was alone with IC. When I found this site, I found a place where I can help others with IC to feel they are never alone.

Donna

[hollipop]

Hi sweetie, please don't give up hope. I think we all need to try everything to find our cure or way to remission. I really thing that IC is a bunch of different diseases that we just have to keep searching for a remedy. I've fortunately found my way through the broth culture and antibiotics, and I'm feeling great. I am eating/drinking whatever I want and am weaning myself off the elavil. I don't think I need it for my bladder, but it is great on my psyche. I think I have a slight chemical imbalance, so I'm reluctant to give up my pill that makes me feel normal.

Hang in there and keep on trucking. I know you have tried many things, but there just has to be something out there that will help you deal with it.

:grouphug: :kiss:

[hoping4acure]

Great post Donna...In my own way, that's what I was trying to say and it is exactly how I feel.

[ICLori]

Thanks, you guys. Hollipop, that's great, I am so glad to hear you are better!

I guess when I see everyone here, I just kind of assume they are like me, that they are in pain most of the time. But now I can see, that's not the case, that many are much better.

I just have to hope that maybe I can find something that makes me better.

I guess it's too soon to give up on Cya just yet (I wasn't going to stop taking it, but I lost hope...) I thought I would feel better within a couple of weeks, but I can see from other's experiences on it, that it can take 8 weeks to 4 months to really start seeing a difference. I've only done 3 weeks so far so I guess I have a ways to go.

Blessings,
Lori

[Trishann]

Hey Lori, Just want to say that I hope you start feeling better with this new medication. Thinking about you.

[poetgirl]

I know the frustration you are feeling -- I think all of us have felt it at one time or another.

I am one of those who no longer have bladder pain every day or the torturous cycles of UTIs. It took 3 years of being on Elmiron and Elavil (plus a continuous cycle of birth control pills) in order for that to happen. Sometimes I experience some urethral burning or mild pelvic floor spasms but it's not that often, and not debilitating. It usually passes on its own within an hour or so. (Culprits are usually certain foods or if I try to void too quickly.) I haven't had a full-blown flare in over a year.

However, there's no guarantee that IC is done with me yet. I know the symptoms could return if I have some kind of inflammatory response that gets difficult to control. Sometimes I worry about it (especially now that I'm trying to get pregnant) but mostly I am just grateful to feel like my old self again for however long that lasts. At least I feel like I'd know what to do now if my symptoms returned. I feel lucky that the treatment options I tried worked for me, after some experimentation (I tried DMSO, and cysto/hydros and didn't feel much relief from them.)

I stay on the boards to provide support and advice where needed, and because this is a community where I can talk about IC, VV and IBS without people getting uncomfortable or looking at me funny. It hurts me terribly to know that so many of us do not experience significant improvement over time, but I keep up hope that there will be a cure or more treatment options available. :grouphug:

[mayray518]

I would hope more than a few stay on the boards after they feel well. I dont come on as much as I used to because I am working full time but I still check the boards and respond to posts. The internet wasnt around in 1992 when I got IC and when it did come into the mainstream and I found this site it was a Godsend. I wanted to give hope to everyone on here that you can get better. I think its pretty selfish to get help from a site and get better and then to completely disappear because you get better.

[Briza]

Even though I feel well most of the time, I still visit because:
1. everyone is wonderful and kind here, where else can I go to find this kind of understanding and support?:grouphug:
2. I learn something new almost everytime I log on...most recently about how pelvic floor spasms could be contributing to my vulvodynia symptoms...made an appt w/ my gyn and he prescribed valium and my V symptoms were 95% better within a couple of weeks!:woohoo:
3. I've made some great cyber-buddies here :hi:
4. I know a lot more about IC and Vulvodynia now than I knew when I made my very first very :help: distraught post and I hope that I am able to help and support others like all of you have done for me :kiss:

[asilva]

Lori,
I understand what you are saying. I tried to PM you, but couldn't. If you'd like to PM me and give me an email address, there is something I'd like to share with you.

[ICLori]

Hi, Asilva, my e-mail is ILUVHIMMIES@aol.com.

Good news everyone - I didn't need any pain pills today or this evening.

The bad news is, I have a stomach bug or something, I've been having diarrhea - or maybe it's a delayed reaction to the CyA I'm taking, who knows...anyway, felt pretty cruddy most of today, very tired, but no bladder pain, which is a ray of hope.

Blessings,
Lori

[VickiB]

Hi Lori,

Been battling a stomach bug, flu type symptoms myself lately. Diarrhea and nausea,....what fun! Glad to hear at least your bladder is giving you a break for the day!

As others mentioned, I think it's hard to come on here and say that one's doing well. For me, I'm very much aware that many here are really suffering, and to say that I feel good seems out of place most times. On the other hand, I do want people to know that reaching that point is possible. I know I was desperately grasping for hope to hold onto back in the days when things were very bad with my IC. So I shoot for a delicate balance when posting.

Remission though? I can't say that, as I do have rare short lived flare ups (usually self induced by diet). I find myself using the restroom more often that normal people, but I can live with that. 95% of the time I am pain-free, though the nagging sensation that my bladder is slighly tender is most always present. Compared to the terrible pain I used to know on a regular basis, my symptoms now aren't worth mentioning, and rarely limit my activities.

I'm so sorry for all those here who have not yet found relief from their pain, and even feel a bit guilty that I somehow lucked out. I'm also scared that my luck will not hold. Lori, I do believe that we'll see much better treatments in the near future, and hopefully a cure in my lifetime.

Hugs,
Vicki