Question About Classification

[graceunderfire]

Hi guys,
As I've slowly been working my way through the posts on this forum, I noticed the distinction between mild/mod/severe IC. According to this forum, the mild IC is frequency and urgency with no pain.

I guess this is my question. I have constant pain (more of a dull ache, which worsens if my bladder is empty--if I don't drink enough water) without the frequency or urgency. Ironically, if I don't drink enough water, I get the frequency and urgency more where I'm having to go to the bathroom 3-4 times an hour, with a barely trickle that comes out (which really burns). But if I can keep a full bladder (basically chugging a TON of water), it helps me feel better in that I may still be urinating frequently (although not as much as I would otherwise), but at least it's productive and not as painful.

So my ways of coping with the urgency/frequency is to drink more water. And since I drink a lot now, I don't really have that as much. But I do have the pain.

So, in short--do others have JUST the pain without the urgency/frequency or am I looking at something else besides IC? I do have urgency/frequency but it's manageable by keeping my bladder full.

Thanks,
Grace

[kaestu]

I am similar to you in that the amount of water I drink makes a huge difference in how I feel. I rarely deal with the frequency/urgency feeling unless I have developed an actual bladder infection or am dealing with the residual effects after having one. (I get a lot of bladder infections but once an infection has cleared, my IC is at its worse for quite some time still.)

Other than that, I mostly deal with a dull ache that worsens if I don't get enough water. I feel that my IC is mild in comparison to what others are dealing with but I don't know what the "line" is from mild to moderate, etc.

Do you take any meds or herbs for yours? A lot of mild IC sufferers feel relief from some kind of meds or herbs.

[graceunderfire]

No, Kaestu. I'm not taking anything right now. Mostly because I'm still not exactly sure what I have (I have a hydro/cysto in a few weeks), so I don't want to do anything that might worsen my condition.

And like you, I consider my case pretty mild compared to others on this forum. If this is IC, I'm thankful for the early knowledge in being able to get a handle on this before it gets worse.

I read about the hydrodistention, and have a fear about it making my symptoms worse. Right now, it's mild and totally tolerable. But according to what I read, for some, the hydrodistention was sort of the beginning of it getting bad. I'm really concerned about this and about doing something that will put me into the "next classification". I know it's necessary for diagnosis (especially to rule out something like cancer), but I'm feeling really apprehensive about the long term side effects.

Grace

[Goldfinch]

Cysto w/hydro is NOT necessary for a diagnosis, nor is it necessary to rule out bladder cancer. In-office cysto can rule out cancer. Some doctors will diagnose IC on the basis of your history, an in-office cysto, possibly a CT scan, ruling out OAB, stones and response to diet or even response to a course of drug therapy as a diagnostic tool. Others may use the potassium sensitivity test.

If an in-office cysto shows obvious irritation or sign of ulcers then a doctor may request a biopsy, which would be done during anaesthesia and probably with hydrodistention as well. If it shows nothing, one uro might wish to do more tests such as PST or the cysto w/hydro. Another uro might chose to simply try meds and diet to relieve the symptoms, and see what works before suggesting more invasive tests. There is no right or wrong; just different patients, different ways of presenting, and different approaches to treatment.

[Sue10]

My symptoms are very similiar to yours. I never had urgency and only had frequency when my bladder was empty. The more water I drink the better I feel. Pain and constant pressure was my greatest symptom. I did however have great pain in the bladder and in the urethral area.
My symptoms did not increase after I had a cystoscopy with hydrodistention.
I was told by my doctor that my IC was moderate. I think they rate you by your symptom severity and maybe by how your bladder presents during the cysto. I was told my bladder looked pretty inflamed.
I hope this helps and good luck!

[graceunderfire]

Sue10--that is EXACTLY my symptoms. A lot of my pain is in the urethral area as well as the generalized pressure and low-grade but persistent pain in the bladder area. It just always feels "irritated". It's not excruciating, just very uncomfortable.

So, where are you now in your IC issues? Has it gotten better, worse, the same? Are you on treatments? How long has it been since you've been diagnosed? Were you under anesthesia during the hydro/cysto?

Grace

[graceunderfire]

Goldfinch,
Thank you for your information about hydrodistention and it not being needed for diagnosis. I didn't know that. So I guess my question is, why do hydrodistention then? What is it's purpose compare to a cystoscopy? Why not just diagnose from the cystoscopy?

Grace

(I should probably post this in the hydrodistention part--it's hard to know where to put what where. Since this thread is kind of going this direction, maybe it's easier to keep it all in one place? Or no?)

[BT2008]

Hey Grace,

I guess this is my question. I have constant pain (more of a dull ache, which worsens if my bladder is empty--

That is one of my main complaints as well! I read about the hydrodistention, and have a fear about it making my symptoms worse. Right now, it's mild and totally tolerable. But according to what I read, for some, the hydrodistention was sort of the beginning of it getting bad. I'm really concerned about this and about doing something that will put me into the "next classification". I know it's necessary for diagnosis (especially to rule out something like cancer), but I'm feeling really apprehensive about the long term side effects.Even though I did flare worse for a few days after the cysto/hydro, I would not say that it made my IC--in general--worse at all. Although for a few days there, I thought that it had for sure!! But, any kind of 'messing around down there' has the potential to make the pain worse! For me, IC has been a progressive disease from the first moment I was hit with the pain, and over time it just kept getting worse and worse even before my cysto/hydro. (But, surely there is a stopping point somewhere down the line!)

I do not profess to know all of the how's and why's of the two procedures when combined, except to say that with a standard cysto the bladder can very easily appear to be "clear and normal", thus leading to a misdiagnosis or a total dismissal of the patients complaints (the, "I can't find anything wrong with you" scenario). But, after the bladder has been distended the hidden glomerulations (pin-point hemorrhages that are not readily visible via a cysto alone) will present themselves.

Also, those sufferers whose bladders have shrunk or are filled with scar tissue due to the ongoing inflammation, are thought by some to be best diagnosed with both procedures. In some cases bladder capacity is a determining factor of the severity of the IC (which the hydro measures), as well as the presence of Hunner's ulcers and glomerulations. But Goldfinch is right in saying that it is not necessary to have a distention in order to take a biopsy to rule out cancer.

As far as the "dividing line" between the severity of IC, well...it is kind of unclear, except, only a small portion of those diagnosed have been proven to have Hunner's ulcers or glomerulations (and the latter may be because the patient did not have a hydro). The majority of the pain that comes with both of these is coming directly from inside the bladder wall and can also include all the other issues that IC can come with.

This leaves the greatest portion of sufferers having more UTI like symptoms (with negative cultures, of course), such as urethral burning/pain, frequency and urgency being the primary complaints.

I have mild to moderate frequency and urgency issues compared to the moderate to severe levels of my actual bladder pain (I have gloms). I also have not had any urethral pain at all since being hit with IC (and I have had UTI's in the past, so I know what that feels like and how much it hurts! I call it "blow-torch" pain!) But my IC bladder pain is very different and constant--more of a churning ground-glass type of pain (especially within minutes of emptying my bladder and while it is filling up again), unlike UTI pain which primarily happens while urinating, followed by throbbing discomfort.

So, when we speak of our IC PAIN, we are not all speaking of the same types of pain! (And I won't even attempt to go into the additional pains of various types of spasms, pelvic floor pain, and vulva problems!:rolleyes: This post is long enough as it is!)

Everything is all so closely connected down there, however, it is oftentimes hard for the sufferer to tell exactly "where" the pain is coming from. But, from my own experience, there is a distinct difference between UTI like "urethral pain" and the "direct bladder pain" I experience with my version of IC.

One other distinction is well worth pointing out: there are A LOT more remedies for the majority of patients than there are for the smaller percentage. Drugs and remedies for frequency, urgency and urethral pain do not usually help "inside bladder pain" (not for me anyway, or some others that I have read about). BUT--I don't want to get into trouble here by splitting hairs! So, that is why I am distinguishing the difference between urethral pain and bladder pain. Both can certainly be debilitating, but they are coming from two different places. And, I am sure that even with those in the majority of IC sufferers, there can certainly be general bladder pain involved as well--because inflammation can spread like wild-fire (a very appropriate metaphor, eh?). I guess it all comes down to the severity of the urethral and/or bladder pain. So see? I told you that there is not, at present, a very clear dividing line!

So, that's about all I know!! And--I only know for sure what IC is for me.

~Beth :)

p.s. Something did just occur to me though: I have been reading reports where urologists around the world are trying to create such a "dividing line," but there is yet to be a consensus. But it looks like the trend may be leaning toward the majority of sufferers being placed into the Painful Bladder Syndrome (PBS) category and the smaller percentile will remain in the IC category. They are trying to do this primarily to narrow the field for clearer communication, as well as for seeking appropriate remedies for both. With this, it is being suggested that out of the 100% of those currently diagnosed with IC, the two distinct groups may actually be suffering from totally different diseases, with different origins and prognoses. And, lumping us all into the same category is the reason there is so much :headbang: going on! You know, the "what works for one may not work for everyone" motto. Creating such a distinction will also eliminate the standard that "IC is an exclusionary disease" diagnosable by excluding all other possibilities first, and then by symptoms alone.
.

[Goldfinch]

In some ways pelvic and bladder symptoms are like a dense forest. IC might be one tree, with many branches. Right next to it is another branching tree which might be pelvic floor dysfunction, and growing right close to those trees is another tree that might be vulvodynia, and right next to that...etc. All these trees start intertwining with eachother and some might even start growing in tandem. It's really hard to tell where one begins and another leaves off. So you can see how it's hard for a doctor to sort out which branches might be part of which tree at a certain point; some people have a lot more branches in their forest than others; in other words, you can't see the trees for the forest. Because they are often so ambiguous, many peoples' symptoms are lumped into a continuum and called IC. As BT2008 says, pain is often hard to quantify and hard to locate; it is referred, it travels, it morphs and it's often difficult to describe.

What I meant when I said that a cysto w/hydro (or the PST for that matter) isn't necessary for diagnosis is simply that not all doctors will require either of those tests in order to diagnose and treat IC. But, as BT also noted, that's one good way to confirm whether there is ulceration or degradation of the bladder lining that would cause irritation of the interstitial layers. So, that being the classic definition of IC (albeit possibly a limited one), cysto w/hydro can be a definitive diagnostic tool.

[graceunderfire]

Great information, guys! Thank you!

Okay--another question. I can see how all levels and types of IC, Pelvic Floor Dysfunction, Vulvodynia are so closely related that it's hard to sometimes distinguish the symptoms from one another. But is IC the only one affected by diet (since it actually involves the interstitial layer) or are they all affected by diet?

I'm learning a lot...

Grace

[ICNDonna]

Some doctors are willing to make a diagnosis based on symptoms alone. Others prefer to be totally certain about a diagnosis before treating. When I had my first cysto in the doctor's office my bladder looked healthy and normal. There was no visual indication that there was a problem. It was important to me that I have a definite diagnosis so I chose do do the hydro. The wonderful thing is that I am among the 50% who are helped by the procedure.

If both you and your doctor feel comfortable with a diagnosis based on symptoms, I say go for it.

Warm healing thoughts,
Donna

[Goldfinch]

Great information, guys! Thank you!

Okay--another question. I can see how all levels and types of IC, Pelvic Floor Dysfunction, Vulvodynia are so closely related that it's hard to sometimes distinguish the symptoms from one another. But is IC the only one affected by diet (since it actually involves the interstitial layer) or are they all affected by diet?

I'm learning a lot...

Grace

Good question. I only have IC and all my symptoms are bladder specific. I don't have obvious food triggers but after months of a strict diet with occasional testing and cheating I find that for me, flares are long-lasting affairs that appear to be the result of cumulative minor transgressions. For instance, I can have a cup of very weak white tea OR two bites of dark chocolate OR a few sips of white wine once in a week and be okay, but if I do all three of those things within a few days I might be very sorry about it.

There appear to be a few on these boards for whom diet has no effect (and that may be a curse or a blessing, depending upon how you look at it), but it will be interesting to hear how others respond. You may end up just having to see exactly how your own body responds to the IC diet, and that in and of itself will useful info for your doctor in trying to sort out just what's going on with you and how to treat it.

[BT2008]

Goldfinch--...in other words, you can't see the trees for the forest. Great reversal of a very common analogy, in which the usual usage ("You can't see the forest for the trees") points out the necessity to see the whole picture of something. With your reversal it is showing how necessary it is to see all of the different components (the individual trees) that represent the "general pelvic pain forest". We can also extend this metaphor even further to recognize the importance of seeing each of the elements that make up what has become a very broad category of "unknown bladder diseases", currently being lumped together as IC. In the "IC Forest", each tree represents a certain type of IC with individual branches of certain symptoms. Very nice!

GraceOkay--another question. I can see how all levels and types of IC, Pelvic Floor Dysfunction, Vulvodynia are so closely related that it's hard to sometimes distinguish the symptoms from one another. But is IC the only one affected by diet (since it actually involves the interstitial layer) or are they all affected by diet?I would say that they can all affected by diet, either directly or indirectly.

With IC:
As you have probably already read, the bladder wall has four principal layers, the innermost being the "Mucous membrane (mucosa)," which is also known as the "transitional epithelium"; this layer lines the bladder, ureters, and urethra". One of the primary purposes of this layer is to protect and shield the deeper layers of tissue that lie underneath this membrane. This is the layer we read so much about, in that "somehow" this layer has become damaged through repeated presence of inflammation (where the smooth mucosa has thinned or even eroded in places). This damage has left the deeper tissue levels of our urinary tracts unprotected from the urine that must pass from the kidneys to the outside world.

Urine contains toxins, there is no way around that, because urine is comprised of not only the by-products of what we eat/drink, but also of the waste products that are excreted from our normal bodily functions. With IC and diet, the goal is to reduce the acidity and dilute the toxicity of the urine as much as possible, so when it comes in contact with our damaged urinary tracts it will not continue to "feed the fire" of the inflammation already present. Generally speaking, "what goes in" must eventually pass through the ureters, the bladder and the urethra, so our urine must therefore be as clean as possible.

Since the musoca layer is necessary to protect the ureters, the bladder and the urethra from the toxicity of the urine, I assume that diet affects all sufferers of bladder and urinary disorders where inflammation is present--whether it be from a UTI or IC. This holds true to an even greater extent when the mucosa layer has been severely compromised. And this, I assume, can only be determined for sure by having a doc take a close look inside our urinary tracts via a cystoscopy and hydro-distention.

With PFD and Vulvodynia:
Because inflammation in any one (or all) of these areas is creating "trauma" in those areas, it stands to reason that our physical and chemical reactions to the pain of the inflammation will directly affect the surrounding tissues and muscles. This, I assume, can lead to Pelvic Floor Dysfunction, in part because we are prone to tensing up our whole pelvic floor when our urinary tract is in continuous pain, thus leading to a very tight and dysfunctional musculature of the PF. Another reason is because of the various muscle spasms that are subsequently triggered under such trauma, and additionally you have to consider the necessary blood-flow that is compromised when all of this is happening at once. Then, in Vulvodynia, it is my understanding that inflammation is directly present in these tissues as well (both the surface and inner layers), and would therefore be affected by contact with the urine as it leaves the bladder via the urethra (by trickling all over the inflamed vulva. Yowee-Ouch!)

So, by doing everything we can to reduce our urinary inflammation--wherever it is located--the more we will be helping to reduce the pain and discomfort from IC, PFD and Vulvodynia. And diet is one of the logical ways of doing so!

Sorry for the length of the post!
~Beth

Resources:
http://www.cheyenneurological.com/images/blad1.jpg
http://training.seer.cancer.gov/ss_module05_bladder/unit02_sec02_anatomy.html
http://www.ic-network.com/handbook/bladwall.html
http://www.ic-network.com/handbook/urinary.html
http://www.ic-network.com/handbook/urinarytract.html

[elamar]

Have you tried any anti-spamodics yet? The most common ones are urelle, prosed, ditropan or pyrdium. Pyridium is the one that turns your urine orange. You can buy a lower dose version over the counter at drug stores. It is actually only supposed to be used for a short period, like when are getting over a uti. Urelle and prosed are very similar and they turn your urine blue. I take utira-c which is basically a sister med to urelle. It is extremely effective and safe for long term usage - I have been using it for over 2 years now. When my frequency gets extreme - like having to pee every 10 minutes - ditropan xl worked great for me. I rarely ever have to use the ditropan anymore - I used it more at the beginning of symptoms to get things to calm down. I usually just use 1 utira-c each morning after my first urination. It helps get rid of the burning bladder and it seems to be a sort of maintenance drug for me. One a day keeps most of my symptoms in check. I still have twinges in the background of needing to urinate, but if I stay busy or reclined, I can get relief. Others on these boards had good luck with Elavil. It didn't help me, but we are all so different you never know. You should talk to your doctor about starting some sort of antispasmodic - I really think you'll be helped by that. Good luck to you.

[Sue10]

Sue10--that is EXACTLY my symptoms. A lot of my pain is in the urethral area as well as the generalized pressure and low-grade but persistent pain in the bladder area. It just always feels "irritated". It's not excruciating, just very uncomfortable.

So, where are you now in your IC issues? Has it gotten better, worse, the same? Are you on treatments? How long has it been since you've been diagnosed? Were you under anesthesia during the hydro/cysto?

Grace

Hi Grace

In answering your questions, my IC is much better controlled these days. I was diagnosed Nov./07. I am taking Elmiron for the last 11 months now. The longer I stay on it the better I feel. I still have some bad days here and there but for the most part am doing so much better. I am on the diet but have learned through elimination there are some things on the No list I can have now. To give you hope, there are some days I forget I have it...thats how good I feel. I find during my monthly cycle due to hormones are my worst days. I can handle a few bad days in a month as compared to daily severe pain and discomfort prior to diagnoses!
Yes, I was under a local anesthetic. I was out for the majority of the procedure. I really did not have any problems other than some burning upon urinating for a day. It really helped to drink lots of water afterwards!

Good luck!