IC Progression?

[BT2008]

Hey all,

I am starting this new thread to compare what we are all being told about the prognosis of our IC.

Specifically, Kadi posted in another thread that: IC can be progressive in some individuals. However, my doctor at Stanford, who has seen hundreds of IC patients, told me that for most, it only progresses for the first 18 months, then levels out.I have read other peoples' posts in the past that report that their docs say something similar: that after a certain period of time IC does level off.

When I read those posts, my initial question was: "What beginning date would we count forward from--the date that symptoms of 'mild IC -- with no pain -- first started', or the date when the actual 'pain' hits? I wondered because I have had frequency and urgency issues since the summer of 2002, but the pain didn't hit until the summer of 2008.

But, when I thought my question through--in my case anyway--it must be from the date when 'the pain hits', because it was right at six years from the beginning of my frequency and urgency to "the point of pain." And even then, the pain has definitely progressed since I was first hit 9 1/2 months ago...

Two appointments ago, my urologist said that there is nothing else they can do for me except "keep me as comfortable as possible with the pain meds." When I then asked if "that means I will have to live the rest of my life on narcotic pain meds?" -- And I can't remember exactly what he said, but something to the effect of -- hopefully it will "level off" one day.

I will of course ask my own uro more specifically when I go back in a few weeks, but until then ...

Question: What does "level off" or "level out" mean? That at some point the pain will cease getting worse, but stay at about the level that it is now, or what it will be at ____ point in the future?

Or, put a different way: Does this mean that at some point in the future my IC pain will "stop getting worse" but "not necessarily better"??

Question: What other dates have doctors estimated?

And for those who have had IC for many years, are these dates about right?

I realize that many people do get better with proper treatment. But my concern remains in whether or not my pain will ever get to the point where I won't need narcotics anymore. I am already "much better" than I was 3 months ago, but -- along with the IC diet and the instills -- the "narcotics" are still the most crucial aspect of "my treatment".

I also realize that--short of a cure--I will have IC for the rest of my life, in some form or another. But now that we are beginning to get my pain under some semblance of control, I can think much clearer these days and I am feeling the need to try to begin to plan for my future. So, I think these questions are really good ones to try to answer.

I know that currently I am definitely "disabled" -- but I would LOVE to think -- that at some point in the future -- that will not be the case anymore! I do, however, feel the need to "be realistic" when thinking about the future...

So, all of your thoughts on this will be greatly appreciated!

Thanks,
~Beth

[ICNDonna]

My IC did its progressing in the six months prior to my diagnosis in 1975. With treatment, I began feeling better and now would have to say I am better than at diagnosis. I still watch my diet and have occasional flares --- and still have hydros about once a year, but for the most part I live a normal, active life.

When I was first diagnosed, I was completely obsessed with worry that I would get worse, that I could anticipate having my bladder removed. With the help of a co-worker (a psychiatrist) I made the conscious decision that worrying would not change my future and it was ruining my today --- so if I'm having a good day today, I will enjoy it; if tomorrow is not good, I will face it tomorrow, but I will not allow it to spoil this day.

Only a very tiny percentage of interstitial cystitis patients get worse over time. Most are like me --- they do pretty well by sticking with the diet and with treatment.

You say you are feeling better --- hopefully that will continue.

Sending warm healing thoughts,
Donna

[BT2008]

Hey Donna,

I am not so much "worrying" anymore (not most of the time anyway!); I am, rather, feeling the need to start making different plans for the future--different from the plans that I originally had pre-IC. I am not the kind of person who can just continue to be "tossed around on the waves" of worry and uncertainty!

So, I also feel the need to make sure that my planning includes "realistic probabilities"...rather than "hopeful possibilities".

Please know I am not giving up "hope" by any means, because a cure or other alternative would change any plans I make for the better--and would be very good indeed!

I just feel the need to be realistic in my planning -- based upon what I know for sure.

Thanks,
~Beth

[icnewlywed]

I'm not sure I agree that IC levels off. I had my first symptoms at age 15, my symptoms then became worse 2 years later around the age of 17. I had a bladder dilation and went on the ic diet and improved to the point of almost remission for several years. At 23 the symptoms came back temporarily for no known reason and another dilation was done and got them back under control. 8 years after my first symptoms my IC took a nose dive. I have never been as sick with IC as I have the past 6 months. I would say my IC was more of a roller coaster than a progression. I also think many times doc's make comments like this off the cuff and don't realize their patients take everything they say as a researched fact. In my experience IC has been an unpredictable roller coaster of symptoms from non existince to severe. I was considered to have moderate IC when first diagnosed and received the upgrade to severe during the past 6 months.

[Cortana-mana]

For me the IC leveled off after about six months. I think that because I was diagnosed and started the diet, I was no longer actively irritating and hurting my bladder. I feel for me at least that when I mess up on the diet or ignore it for a long period of time, actual damage is done. I feel worse afterwards, and not just flare worse, but sustained worse.

I did DMSO's for almost two years, but not quite. When that treatment wore off, it plunged me down pretty deep, but I was eating things I wasn't supposed to. On the DMSO it didn't matter, but I didn't react quickly enough and stop eating those foods once the DMSOs stopped working entirely.

My IC ended up worse than before and I developed PFD and VV, which didn't help the IC any of course. I've been lucky enough to find a new treatment (elmiron and elavil and PT) that has worked wonders for me. Still though, I am so much more sensitive to everything than I ever was before. On a good day I feel normal, like I used to on the DMSOs. Yet if I walk up too many stairs (class on 4th floor T/Rs) or eat something with natural flavorings or too much salt, I am stuck on the couch with the heating pad and movies.

ICDonna, I love the way you phrased the idea of not borrowing trouble. It has taken ages for me to learn that. In fact, I don't think I quite have it down yet. It makes a world of difference though. Much easier to recover from a flare when you aren't worried about how the flare will make you feel tomorrow. Much easier to continue a good streak when you aren't stressing about the likelihood of a flare tomorrow too.

[leelee88]

I have dealt with frequency for as long as I can remember. My pain did not start until 2006 and after that I was in constant severe pain 24/7 Without pain meds..I honestly felt I was being tortured.. But Drs here refuse to treat IC with pain meds. I was put on other things that did ease it but only to where I could tolerate it.

It was not until after a good year and 1/2 that I started to see things change.. I would not have the pain 24/7 and would get some breaks. I mean I would still have pain but the level of pain was different. Then at the 2 year mark It had gotten even more manageable. I continued the Diet which I think is a BIG part of keeping IC manageable. Then a few months ago I was put on Lyrica a very very low dose and that has given me pain free days..

Now I have flares but I feel my IC is under control and just not all over the place.. I really feel my bladder was getting better before the lyrica because my volume had increased a lot. And I had a very small volume and had a lot of frequency which I only go like 8 times a day now morning until night.. I was going like 20 or more..

I do not believe my bladder got like this over night. And I do not believe it will be healed over night. Or shall I say get better over night. I do think I will have to take care of it. I feel it is very fragile.. And NO matter what medicines I am on that make me feel better I will always watch what I eat or drink! Even If I go into remission I will always stay away from foods or drinks that could possibly irritate my bladder..

[L. Thomas]

My bothersome symptoms were controlled by the initial treatment. I had rapid onset IC. I was treated very soon after the symptoms surfaced. Dr. Dell feels that the treatment was so effective and the IC was diagnosed at an early stage that my IC will probably not advance.

That was in 2004 and the symptoms had not gotten worse. During allergy season I do have frequency and urge problems and need to do instills almost daily but for the other 8-10 months of the year I almost forget I have IC. When I do pain the instill completely relieves the pain.

[mlzippy7]

Hi Beth
It looks like you got a lot of different replies to your post!
We are all so unique so it does not surprise me all the different answers.
I have had IC most of my life. I can't say that it has leveled off like many drs and patients hope it does.
I hope you feel better soon!!

[VickiB]

We are all so unique so it does not surprise me all the different answers.

I often wonder if what they call IC is not several similar yet slightly different disorders all lumped under one heading.

I didn't experience the 18 months then leveling out part. Mine came on sudden back in the '70s, out of the blue, at full force. Since then it's waxed and waned, but overall has stayed pretty much the same for 30+ years.

What has changed is my ability to avoid triggers and being better able to deal with the flares that still manage to sneak through. Because of that I am way better off than I'd been in a long time.

Vicki

[L. Thomas]

Although IC is almost always associated with other pelvic function issues it is a specific disease that can be clinically diagnosed with cystoscopy examination or hydrodistention.

Dr. Dell's research leads him to believe that IC is probably present from birth and is manifested after bladder trauma. His research is leading him to believe that IC may also have genetic association.

[KarenAnne]

I've been told by one dr. that they also believe there is a genetic connection,& by another dr., that they are starting to research if there are different types of IC. One type that is related to just the bladder, & another that is more "systemic", associated w/ IBS,VV,migraines, allergies, fibromyalgia, etc. This is the MAPP study by the NIDDK.

But this thread frightens me. My urgency & frequency started Aug.24,2008, & progressed over the following two months to vulvar pain, mild to moderate pelvic pain, & other bizarre symptoms. Thankfully, I was diagnosed the end of Oct. w/ a cysto/hydro/bx. But I had trouble finding a knowledgeable, compassionate dr., & have had to try many medications. I try to think like Donna says to, but now I am so afraid after reading this. Will we all eventually become incapacitated? I thought I had "leveled off" with diet, & finally amitriptyline, but is the other shoe gong to drop?

[BT2008]

I try to think like Donna says to, but now I am so afraid after reading this. Will we all eventually become incapacitated? I thought I had "leveled off" with diet, & finally amitriptyline, but is the other shoe gong to drop?Dear Karen Anne,

I am sorry that this thread is making you even more afraid! ((HUG))

Hopefully, since you have caught yours so early, maybe your IC will never get as bad as it is with some of us. I truly hope not!

Do try and think like Donna does. Don't worry about it if it hasn't happened yet!

Instead of letting this thread make you afraid, I hope you will let it serve as a "loving warning" -- from all of us, to those of you who are still just in the initial stages -- of how bad IC can get.

At this point, hopefully, all you may have to do is watch your diet for the rest of your life--which, I know, sounds like a "long time"--but having to do so is not so bad when you consider what you could be dealing with if you don't!

Regardless of what medicines you may take through the years, you must be the one to take care of your body! No one else can do that for you!

Much love and many hugs,
~Beth

[KarenAnne]

Beth, I think of this website & all of you as a blessing. I have learned everything I know about IC from all of you here, without you all, I would have been lost. (My first urologist, the diagnosing physician, said to eat whatever I wanted & to look up IC on the computer) It's sad how little we all know about this disease. Thank God we have each other.

[VickiB]

Karen Anne,

It is true that some people do progress, but please don't let that scare you! Keep in mind when you're reading these boards the people who tend to post are those who are suffering, -recently diagnosed or still unsuccessful in their search for their "silver bullet".

Over the years many people have come in terrible pain and left in much better shape. They rarely log on and post anymore because IC is no longer a major factor in their lives. There's a good chance you'll be one of them!

Vicki

[BT2008]

Thank God we have each other.:kissing: + :grouphug: = :smile tee

[joy0212]

I often wonder if what they call IC is not several similar yet slightly different disorders all lumped under one heading.

Vicki

I think we all have IC. It's like other illnesses. Say, lung cancer. There are many types and causes.

Like I say in my signature, IC hit me in 2002. I was able to fight off most problems with a very low dose of elmiron. My doctor told me it would take weeks to work but it only took days. I was able to go without taking it for months at a time. I am VERY VERY sensitive to medication.

In the past year or so, I have been getting after period flares. For about six months, sex has been tough due to IC. And for the past three months, it's been a nightmare!!

[carried_cub]

Here are two perspectives on whether or not IC is considered progressive, based on the different information I have been given at my initial appointments with my doctors.

When I asked my uro if it was progressive, he said no. He said that it does not inevitably progress from point A to point B to point C, and that the moderate pain I had recently that led me to seek treatment might be as bad as it ever got, or it might not.

I saw a urogynecologist today whose handout on IC specifically calls it a progressive debilitating condition. He was not much for questions, but when I asked about progression he said it can, but that I don't know if I have it yet... *conversation trailed off* b/c he recommended a cysto/hydro to see what was going on before proceeding.

I am not saying either of these are correct; it is just frustrating to me to think of patients being given differing interpretations and not knowing if they are based on that physician's personal experience or why that particular interpretation was chosen.

[BT2008]

When I asked my uro if it was progressive, he said no....I saw a urogynecologist today whose handout on IC specifically calls it a progressive debilitating condition.I am thinking that the problem with the differing medical opinions may come from the fact that those of us whose IC has progressed to the point of painful debilitation and disability, were not treated at all, or not appropriately anyway, when we only had mild IC. I know in my case, I just lived with the frequency and urgency for 6+ years without seeking any treatment, assuming that it was just my aging post-hysterectomy bladder 'doing its thing'.

Nowadays, however--especially among the younger generation--sufferers of frequency and urgency are seeking medical treatment, perhaps before the disease has progressed to the debilitating state that it so obviously can. Perhaps, as long as they catch it early it never has a chance to progress in severity or create irreversible damage to the lining and deeper wall of the bladder.

I think that to answer this question in a scientific manner, an extensive survey needs to be done for literally thousands of those who have been diagnosed with IC over, say, the past 30 years. With questions such as: when symptoms first began, what they did to treat the early symptoms, whether or not it progressively got worse over the years, if so--was this progression intermittent with any noticeable signs of worsening or did the progression just came on all the sudden. If the latter, how much time passed between the early stage and the point where it progressed to the severe stage.

Diet, sexual activity, allergies, stress, bodily traumas, and other suspected factors should be included in such a study. Questions can easily, with some circumspect thought applied, be structured in a way where a lot of information could be gleaned from just one questionnaire. In fact, since IC is considered such a "mysterious disease" I am frankly very surprised that we have not all been asked to fill out such a questionnaire already.

Until the urological community, as a whole, really takes the time to "ask us" about the disease called IC, none of us will be able to benefit from such a seemingly generalized diagnosis. Without such a scientific consensus there will continue to be a lot of confusion along with a variety of treatments that may help many sufferers with mild IC a great deal--even to a seeming remission of all symptoms--but as many of our stories relate, these treatments do not help us all; our IC has progressed well beyond the mild and treatable stage. And, it is those of whose IC has progressed to the point of irreversible bladder damage, who continue to suffer because it is too often assumed that we should respond better to the treatments that do work for so many, so therefore our condition is not taken to be as serious as it truly is. What a true travesty this is!

I would love to see some really bright medical students decide to pick up our cause and research their hearts out to find out more about this "mysterious disease" that plagues so many of us--some to the point of severe debilitation and partial to permanent disability--but all of us to the point where our lives are not livable by any "normal" standard.

I feel so very fortunate that I found the ICN, because I cannot even imagine what condition I would be in today, had I (and my uro) not benefited from all the knowledge, wisdom, and support received here!

Again, and again, and again--thank you Jill, Donna, et al, for providing us with the best healing tool for IC on this planet: KNOWLEDGE, COLLECTIVE WISDOM, and COMPASSIONATE SUPPORT!

:grouphug:
~Beth

[carried_cub]

:) on behalf of the frightened newbie brigade, I second that emotion.

Also...I don't remember a time when I and every woman in my family didn't pee every chance they got, not necessarily b/c we had to, but b/c there was an opportunity to go before we went to do something else and we didn't want to get stuck holding it. Or b/c someone else went, and it's like yawning. Or there was an article in a magazine in the bathroom we hadn't finished. We are just some peeing people. The more I look back, the more I think...hmmm...with frequency at least I could not begin to pin when I started. :rolleyes:

[L. Thomas]

The following statement is a quote from Dr. Dell who is recognized national/international specialist in IC. He conducts ongoing research on IC and has compelted research studies with Lowell Parsons, Charles W. Butrick and for the manufacture of Elmiron. He has wirtten a number of scholarly articles, including several which were co arthored with R. Moldwin.

"Interstitial cystitis - also known as IC is a long-term, yet treatable, inflammatory medical condition of the bladder wall.

While the exact cause is unknown, many experts believe that IC occurs when the muscous layer that lines and protects the bladder wall is damaged. This allows irritating substances in the urine to aggravate and inflame the bladder wall.The symptoms of IC can vary from person to person. In fact, symptoms may vary over time in just one individual.

Although the exact number of people with IC is unknown, current estimates suggest there may be as many as 9 million women in the U.S. who suffer from chronic pelvic pain - up to 7 million suffering from IC, specifically."

In my discussions with him he said since there is no medically established set of symptoms for diagnosing IC early that many MD's do not diagnose IC in the mild stage. He is seeing a trend for IC to be generational and also feels that for some IC may be the result of baldder trauma.

[dzeguzite]

I agree that we need to look at this from a scientific perspective...yawn...but it's true. I'm 45 and have had bladder urgency issues since I can remember being alive, but didn't know what was wrong with me until science caught up and I had a diagnosis 5 yrs. ago.
Please don't anyone panic or be frightened, even though that's easier to say than do. http://www.ic-network.com/forum/images/smilies/help.gif I must say I panicked a little, when I saw in one of your profiles (forgive me , my brain is also like swiss cheese) that someone is having their bladder removed. I'm not quite there yet, but I can see it as a possible cloud on my horizon.
I agree , wholeheartedly, that early diagnosis/treatment = slower progression. If I knew even 5 yrs. ago what I know now about diet and self-care I don't believe I would have such a bleak outlook.
Also, to be clear, I have MS, RLS, FMS, severe migraines, and probably hereditary kidney disfunction. I believe with each acronym my IC gets worse. After the MS diagnosis, I had a bladder EMG which showed severe neurogenic bladder, which basically means all the nerves are dead. This hasn't helped the pain or urgency any, however!
Just to illustrate where I'm coming from, my mother had severe depression/ anxiety disorder, possible bipolar, became an alcoholic and died of liver failure at age 58. My psychiatrist said if there had been Prozac, she may have lived a very different life. I have depression/anxiety disorder which has always been treated and I have lived a very productive and happy life.
With every diagnosis, every new treatment, every generation, we gain hope.

[ICNDonna]

I have learned, both from personal experience and for communicating for years now with people who have interstitial cystitis --- that for the vast majority of IC patients, the disease is not progressive beyond the developmental stage. Only a very small percentage will worsen over time --- and an even tinier percentage will eventually need bladder removal.

Most, like me, find that if they follow an IC diet and learn personal trigger foods, and work with their physicians to find effective treatment options, they do well. My IC was diagnosed 34 years ago and, if anything, I am better than I was in the beginning. In spite of having what was diagnosed as a classic case of interstitial cystitis with Hunner's ulcers, I live a normal, active life. I worked full time for many years after diagnosis and even though I am now retired I am still active.

Sending encouraging thoughts,
Donna

[Briza]

Though I have only had symptoms since 2003, my experience has been much the same as Donna's. I did have to take med leave from work for a period of time after dx and treatment, but I did work fulltime as a teacher both before, during, and after diagnosis. Then some med leave from work, which turned out for the best because I now again have fulltime job, but with different emloyer, and the working conditions and enviornment are MUCH less stressful and more for me IC friendly (I have RR acccess now as needed without issue and at my leisure!). Also I work with a small group of employees who are not only my colleague but longtime acquaintances and friends....so I am in a very supportive enviornment, so much so that I have not had to disclose ANYTHING about my IC or ask for any special accomodations, even tho like Donna I have classic IC and hunner's ulcers.

I will just quote Donna again because she very clearly stated not only what I personally have experienced as well, but also what I have learned from my own research, both on this board and from other sources, and from posts from many of the members of this board, especially those who have stuck around to post throughout their dx process, treatment/diet/self help process, and many times very successful processes those were,as Donna says:

I have learned, both from personal experience and for communicating for years now with people who have interstitial cystitis --- that for the vast majority of IC patients, the disease is not progressive beyond the developmental stage. Only a very small percentage will worsen over time --- and an even tinier percentage will eventually need bladder removal.

Most, like me, find that if they follow an IC diet and learn personal trigger foods, and work with their physicians to find effective treatment options, they do well. My IC was diagnosed 34 years ago and, if anything, I am better than I was in the beginning. In spite of having what was diagnosed as a classic case of interstitial cystitis with Hunner's ulcers, I live a normal, active life. I worked full time for many years after diagnosis and even though I am now retired I am still active.

So for those who are in the "developmental stages" of IC my best advice is this: hang in there, for MANY this stage is the most intesnse and then after a 12-18 months or so it seems that symptoms for MANY level out and possibly begin to subside a bit, with or without the help of med treatments. But in the meantime treating the bladder as kindly as possible by drinking lots of water, not holding when possible, following the IC diet can only benefit, but not harm, an irritated/inflamed bladder and can and will do the bladder much good.

It took not til recently that I realized that I am VERY happy that I was not treated heavily for my pain, particularly with long acting meds, during the first two years of symptoms...because if I had, I probably would not have noticed any stabilization or improvement in my symptoms....and my symptoms DID stabilize and improve after that severe developmental stage...yes, it was hard and rough and painful, but in the end things leveled out so much to the point where I could very much determine my food/bev and other triggers with minimal (tho successful) need for meds and MUCH help from diet and other self help stuff.

So for those of you who are new to IC, please take to heart both Donna's and my experiences...because like she said it is very true that it is quite rare for IC to progress drastically, and even MORE RARE to get to the point where bladder removal is the last resort. Ok, I will agree, most of us woud take a "new" bladder any day, but the reality is that very very very very small minority of patients will ever get even near that point...

Hope this helps some in allaying your fears for the future....because I truly believe that for the vast majority the future is very bright!:kiss:

[Preacher-Girl]

:) on behalf of the frightened newbie brigade, I second that emotion.




That was classic!!!!:biglaugh:

[katie87]

It makes me wonder... by not seeking treatment sooner ( I tried, no one believed me and there was no cause found) did i let it get more damaged bc i was untreated for so long? I have had nonstop pain for 5 years now, I finally got treatment after 4 years besides occasional AZO and it was found I have the worst kind of IC with a lot of serious damage. My dr. said that I have a severe case and the bladder itself is covered in ulcers and scars. I can't help but fear that I contributed to it by not DEMANDING to be treated/cured. I tried getting help many times when the IC was just pressure/frequency and I was told nothing was wrong over and over, now by the time I was treated It turns out my pain was accurate and real because I have been damaged and it hurts so bad physically and emotionally, I tell myself I did nothing to cause this, but It is hard to believe, especially when things I do like driving, sex, working, moving, sitting, etc. make it worse... it almost seems like I irritate it daily by accident :(

[Goldfinch]

Katie,

Please don't blame yourself. You had no idea what was wrong. The best we can all do, once we find out what's causing our pain and what helps, is to move forward and hope that others--such as those who find these boards--are better equipped with knowledge and power to advocate for themselves and evaluate every doctor visit in order to find appropriate treatment. This isn't your fault; you didn't cause your disease.

[dzeguzite]

Katie,
I know we always seem to have 20/20 hindsight. I have asked myself some of the same questions you have...I also have much damage after only 5 yrs. past diagnosis. But I also am 2 yrs. past MS diagnosis, my doc says I probably have had it for 10 yrs. Could I have prevented neuro damage with an earlier diagnosis? The answer, for me personally, is that maybe it wasn't the right time to be diagnosed, maybe God wanted me to wait until there were better treatments.
I know I sometimes feel like there aren't many IC treatment options left for me, but then I hear about a new treatment, or research, or someone here has tried something I've never heard of. So far, nothing is applicable to me, but who knows about tomorrow?
I also just found out I have celiac disease, which gives me a diet option (gluten-free) which I have yet to explore. Who knows how much better I'll feel if toxic foods are no longer passing through my bladder?
I encourage you not to give up hope, to try some alternative treatments, especially dietetic ones, and most especially, keep logging on and reaching out. I've learned so much in such a short time...:)

[KKG]

Hey all,

I am starting this new thread to compare what we are all being told about the prognosis of our IC.

Specifically, Kadi posted in another thread that: I have read other peoples' posts in the past that report that their docs say something similar: that after a certain period of time IC does level off.

When I read those posts, my initial question was: "What beginning date would we count forward from--the date that symptoms of 'mild IC -- with no pain -- first started', or the date when the actual 'pain' hits? I wondered because I have had frequency and urgency issues since the summer of 2002, but the pain didn't hit until the summer of 2008.

But, when I thought my question through--in my case anyway--it must be from the date when 'the pain hits', because it was right at six years from the beginning of my frequency and urgency to "the point of pain." And even then, the pain has definitely progressed since I was first hit 9 1/2 months ago...

Two appointments ago, my urologist said that there is nothing else they can do for me except "keep me as comfortable as possible with the pain meds." When I then asked if "that means I will have to live the rest of my life on narcotic pain meds?" -- And I can't remember exactly what he said, but something to the effect of -- hopefully it will "level off" one day.

I will of course ask my own uro more specifically when I go back in a few weeks, but until then ...

Question: What does "level off" or "level out" mean? That at some point the pain will cease getting worse, but stay at about the level that it is now, or what it will be at ____ point in the future?

Or, put a different way: Does this mean that at some point in the future my IC pain will "stop getting worse" but "not necessarily better"??

Question: What other dates have doctors estimated?

And for those who have had IC for many years, are these dates about right?

I realize that many people do get better with proper treatment. But my concern remains in whether or not my pain will ever get to the point where I won't need narcotics anymore. I am already "much better" than I was 3 months ago, but -- along with the IC diet and the instills -- the "narcotics" are still the most crucial aspect of "my treatment".

I also realize that--short of a cure--I will have IC for the rest of my life, in some form or another. But now that we are beginning to get my pain under some semblance of control, I can think much clearer these days and I am feeling the need to try to begin to plan for my future. So, I think these questions are really good ones to try to answer.

I know that currently I am definitely "disabled" -- but I would LOVE to think -- that at some point in the future -- that will not be the case anymore! I do, however, feel the need to "be realistic" when thinking about the future...

So, all of your thoughts on this will be greatly appreciated!

Thanks,
~Beth

Beth,

This is the first time I've done this but OH well here goes! I am the voice for my sister. Little did we know 25 years again after several Dr. did surgery to stop the pain and itching and irritation that they we're missing the diagnoses of what we now know as IC. My sister has been in some type of flare for years and know we are experiencing the pain and urgency and misery of this disease. Her bladder inside has the red sore like appearance and cannot hold enough urine (that a person like me would think isn't worth squatting for) but for her she manages to go to the bathroom 5 times in 5 minutes. We are going to ask the Dr tomorrow and ask if I can do her DMSO Treatments as I am a nurse and trained in doing this procedure in hopes that it will help ease her pain. Any advice you can give me will be so appreciative. KKG We use DMSO...any other you thing is better???

[KKG]

Beth,

This is the first time I've done this but OH well here goes! I am the voice for my sister. Little did we know 25 years again after several Dr. did surgery to stop the pain and itching and irritation that they we're missing the diagnoses of what we now know as IC. My sister has been in some type of flare for years and know we are experiencing the pain and urgency and misery of this disease. Her bladder inside has the red sore like appearance and cannot hold enough urine (that a person like me would think isn't worth squatting for) but for her she manages to go to the bathroom 5 times in 5 minutes. We are going to ask the Dr tomorrow and ask if I can do her DMSO Treatments as I am a nurse and trained in doing this procedure in hopes that it will help ease her pain. Any advice you can give me will be so appreciative. KKG We use DMSO...any other med you think is better???

[KKG]

I agree that we need to look at this from a scientific perspective...yawn...but it's true. I'm 45 and have had bladder urgency issues since I can remember being alive, but didn't know what was wrong with me until science caught up and I had a diagnosis 5 yrs. ago.
Please don't anyone panic or be frightened, even though that's easier to say than do. http://www.ic-network.com/forum/images/smilies/help.gif I must say I panicked a little, when I saw in one of your profiles (forgive me , my brain is also like swiss cheese) that someone is having their bladder removed. I'm not quite there yet, but I can see it as a possible cloud on my horizon.
I agree , wholeheartedly, that early diagnosis/treatment = slower progression. If I knew even 5 yrs. ago what I know now about diet and self-care I don't believe I would have such a bleak outlook.
Also, to be clear, I have MS, RLS, FMS, severe migraines, and probably hereditary kidney disfunction. I believe with each acronym my IC gets worse. After the MS diagnosis, I had a bladder EMG which showed severe neurogenic bladder, which basically means all the nerves are dead. This hasn't helped the pain or urgency any, however!
Just to illustrate where I'm coming from, my mother had severe depression/ anxiety disorder, possible bipolar, became an alcoholic and died of liver failure at age 58. My psychiatrist said if there had been Prozac, she may have lived a very different life. I have depression/anxiety disorder which has always been treated and I have lived a very productive and happy life.
With every diagnosis, every new treatment, every generation, we gain hope.

I'm there with you and I'm tough as nails and I will not give up until I get my sister some help. We've live through "hell" in our lives as well, but we are strong women now and everyone one of us on this site has to pull together and trust in God enough that HE will give someone an AWHA moment on a cure for IC. There is hope.....KKG

[BT2008]

We are going to ask the Dr tomorrow and ask if I can do her DMSO Treatments as I am a nurse and trained in doing this procedure in hopes that it will help ease her pain. Any advice you can give me will be so appreciative. KKG We use DMSO...any other you thing is better???Hey KKG :hi:

So sorry to hear that your sister has been dealing with this for so very long!

I have never had DMSO. While that was previously a first-line treatment, I have read many places where most urologists stopped using this drug because it was SO VERY PAINFUL for the patient who was already suffering enough!

I am, however, doing home-instills three-times a week. The cocktail I have been using has one ingredient that most recipes do not, and that is a high-powered anti-inflammatory, Kenalog. Here is the recipe:

Heparin 40,000 units
Kenalog 40 - 1/mL
Marcaine 0.5% - 10/mL
Sodium Bicarbonate 8.4% - 10/mL

I have tried a few instills with just the Heparin and the Marcaine, and that definitely does the trick for instant relief that lasts several hours. But, when I use the Kenalog I have a much better chance of having several days of lower pain levels.

I do not use the Sodium Bicarb anymore because it burned too much, and I assume I don't need it for the purpose it is generally used for (to make the bladder lining more permeable for the local anesthetic to get where it needs to go). The Marcaine works just fine for me without it.

While I have no way of knowing to what extent the Heparin is working long-term to actually "repair" my bladder lining, I do know that I am certainly benefiting from the Marcaine for immediate relief and the Kenalog for extended pain reduction.

Even though it doesn't help everyone, I would strongly recommend that people give it a try. We never know what will work with this crazy disease until we give it a chance!

Oh, and welcome to the ICN! :) Feel free to post any more questions you might have, as well as any other comments that come to mind!

Good luck, and hugs to both you and your sister!
~Beth

[vm]

My symptoms hit out of the blue one month after my second c-section. They mostly stayed the same from day one - with some fluctuations. I began treatment a month or two after that - several oral medications and the IC Diet.

Within a year of my symptoms starting I was feeling much better. I'd say within 2 years I was back to feeling normal - with medication. That has continued - it has been 8 years since my diagnosis and I feel fine, eat what I'd like, drink what I'd like, and my activity level is not affected.

So, my symptoms are absolutely better than when I was diagnosed! This is due to medication, of course. I think if I went off the Elmiron I'd be back to square one.

It IS possible to get better. Remember that the majority of the people you are reading on the boards are at the ICN b/c they are still in pain/discomfort and are searching for answers/support. The folks who have gotten better tend to move on and don't need this support anymore. Reading here can give a very skewed view of how ICers are doing long term.

[justice4j]

I feel that my IC progresssed. I believe most of the blame is the worry and stress I have had trying to cope wit insurance that reduces coverage and raises rates annually or just refuses treatment the re-assigns meds like Elmirons to Tier 4 making it even more expensive.

It is extremely deleterious to IC when you must not/are not financially able to provide for one's medical necessities.

It's just hell to have to spend so much energy fighting for health care that I pay $736/ months. For WHAT! to be tortured waiting in queue at least 25 minutes...have some associates ask me 3 or 4 times how to spell simple medical terms.

You cannot reason with some of these insurance people, are forced to take action outside the company just to stop the torture. I don't know who is worse, for profit health care insurance entities or others who charge ridiculous sums for half service....

[Mrsrea]

I have to ask, are you talking about it progressing after you know you have it? For me I was just diagnosed in March. I have been in extreme pain for almost 8 years. But back then it started mild and it has just worked its way up to excruciating. I haven't worked since Feb. of 2007 because of the pain, and I am 27 years old! For me though I have always gone to the bathroom a crazy amount of times, I mean my whole life I have been that way! But it doesn't bother me so I never thought to mention that. I have had the terrible back pain and my butt pain into my thighs where it hurts to sit. So I never knew to look into my bladder. I just was lucky to get to a urologist who started asking the right questions. I had been seeing every other doctor for years for my back and nobody could find what was wrong. I believe most of my pain is coming from PFD. I haven't been diagnosed with it yet, but I am working on getting to another doctor for it. I can't wait until I can get out of this pain, I have no idea when that will be but I want my life back. This has over taken my life since 2001 when I was only 19 years old. I can't imagine my life without pain. I have been sleeping on ice packs for 5 years. I can not sit down or lay down without pain, ever! I always hurt. I need to find a doctor thats going to help me. This uro I am with now barely gives me pain meds and I have to fight for them.

[KKG]

Beth,

I'm having a hard time finding a DR that will allow home treatments. What does one have to do to make this happen. As I said before I am driving 60 miles to get her to a urologist and he's not with me on this....who do I need to get my sister to in order to try these new instills? KKG













Beth,

This is the first time I've done this but OH well here goes! I am the voice for my sister. Little did we know 25 years again after several Dr. did surgery to stop the pain and itching and irritation that they we're missing the diagnoses of what we now know as IC. My sister has been in some type of flare for years and know we are experiencing the pain and urgency and misery of this disease. Her bladder inside has the red sore like appearance and cannot hold enough urine (that a person like me would think isn't worth squatting for) but for her she manages to go to the bathroom 5 times in 5 minutes. We are going to ask the Dr tomorrow and ask if I can do her DMSO Treatments as I am a nurse and trained in doing this procedure in hopes that it will help ease her pain. Any advice you can give me will be so appreciative. KKG We use DMSO...any other you thing is better???

[KKG]

You poor child....my heart aches for you. My sister is 57 and to think she must live the rest of her life in this torment makes me sad. I can't even find a Dr that will help me get her on home bladder instills. I'm kinda mad at the fact that I feel sometimes they haven't a clue as to what her life is like with IC. I do not know how she works but today we stopped 7 times for a bathroom break on a 30 minute commute. Someone needs to tell me how they deal witht he DR on this issue..I can be aggressive but WHY should anyone have to be when you have this kind of pain. I compare this pain to Cancer....KKG



I have to ask, are you talking about it progressing after you know you have it? For me I was just diagnosed in March. I have been in extreme pain for almost 8 years. But back then it started mild and it has just worked its way up to excruciating. I haven't worked since Feb. of 2007 because of the pain, and I am 27 years old! For me though I have always gone to the bathroom a crazy amount of times, I mean my whole life I have been that way! But it doesn't bother me so I never thought to mention that. I have had the terrible back pain and my butt pain into my thighs where it hurts to sit. So I never knew to look into my bladder. I just was lucky to get to a urologist who started asking the right questions. I had been seeing every other doctor for years for my back and nobody could find what was wrong. I believe most of my pain is coming from PFD. I haven't been diagnosed with it yet, but I am working on getting to another doctor for it. I can't wait until I can get out of this pain, I have no idea when that will be but I want my life back. This has over taken my life since 2001 when I was only 19 years old. I can't imagine my life without pain. I have been sleeping on ice packs for 5 years. I can not sit down or lay down without pain, ever! I always hurt. I need to find a doctor thats going to help me. This uro I am with now barely gives me pain meds and I have to fight for them.

[BT2008]

Beth, I'm having a hard time finding a DR that will allow home treatments. What does one have to do to make this happen. As I said before I am driving 60 miles to get her to a urologist and he's not with me on this....who do I need to get my sister to in order to try these new instills? KKGI don't know K. I didn't have any problem talking my NP into it. She wanted me to get them twice a week and I just told her I couldn't afford for her to do them but once a month because it was $50 a visit. So, when I asked her if I could just do them at home, she agreed and set me up with everything I needed. My uro doesn't do them in his office at all, so he doesn't have a problem with my doing them at home either.

Maybe you just need to keep badgering them until they say yes. Otherwise, I really don't know what to tell you except to get on the phone and check around for a uro or gyn who will.

I just thought of something else: I am unable to work right now because my IC is so severe, so maybe the fact that your sister is still able to work has something to do with it?:confused:

Whatever the reason, I truly hope you find a solution for your sister sooner rather than later...

Hugs,
~Beth

[BT2008]

I have to ask, are you talking about it progressing after you know you have it? That is what makes the question so misleading...and the main reason I posted it. Quite a few posters say that, but where DO you start to count from? It doesn't really make sense to count from the "day of diagnosis" because that is a totally arbitrary date: for me, it was six years from the time of the onset of the frequency and urgency before I felt any pain, and I had to wait three months from the onset of pain to get my diagnosis. So, that is why the "date of diagnosis" does not work when applied to whether or not the disease itself is "progressive".

So, if I had to answer that particular question right now, I would have to say that for me, most definitely--IC is a progressive and chronic disease.

Specifically, there have been two different stages of "progression" in my IC journey--so far:

The first stage started six years ago when my frequency and urgency began after a complex surgery. Developing the frequency and urgency was quite a hassle at first, truly disrupting my lifestyle; I was not happy about it at all! And it did get progressively worse for a while--but it eventually leveled off. It definitely took me a while to get used to it, but I eventually did; I just wore a mini-pad every day for years and made sure I went to the bathroom before I left to go anywhere. Also, my frequency and urgency were both non-painful, except when my bladder got really full which was just common sense in my mind, so I didn't think much about it. I had no idea that anything was "wrong".

Everything pretty much stayed status quo for all of those years, until June of 2008 when I was suddenly hit with the severe pain. Even though I wasn't diagnosed until September 11th, my uro uses the June 14th date as the day that "severe IC" set in. But the disease has continued to progressively get worse since then and hasn't really "leveled off yet" except for the use of 24/7 pain meds. But--pain meds do not mean "real remission" because I still have "flares" several times a week even though the pain isn't as bad it has been in the past.

So, I am still in the process of trying to get my body to heal or to at least stop getting worse. And hopefully that day will come, eventually. But, so far, it is proving to be an elusive endeavor. I continue to be physically disabled to the point that only basic daily self-care and a few simple meals is about all I can do without serious repercussions. And even then, sometimes all I have to do is go pee, and my pain shoots much higher even if I haven't been physically active. So...who knows? My uro contends that this is the most frustrating thing about IC for them--even the docs don't know what to make of the way IC works, especially because we are all so different in the way we respond to treatments.

I have no idea where I will be next month, let alone 8 years from now...so bless your heart! I just cannot imagine ...

Lots of Hugs,
~Beth
p.s. It just occurred to me, however, that maybe I can imagine! If I count backwards from the time that the freq & urgency first started, then I guess I have already been "at this" for seven years!