Wondering if it's IC? -- must read!!

[karen10]

Hey all those of you who have been wondering if you have IC check this out! My IC diagnosis is fairly recent, but I've had chronic UTI's for years. I've been doing hours of research a day on this thing called IC, and Jill and this website has some absolutely GREAT stuff, so make sure you check it out. I keep finding new things here (that correspond with all the new research I've been digging up at the medical library at my hospital). For those of you who have urologists who are telling you that you need cystos/hydros for diagnosis of IC, check this out (quote from an IC doctor):

I'll take this one more step. If I had a doctor recommend a cysto/hydro for a patient to make a diagnosis for IC, I would run the other way. Again, it may have therapeutic appeal, but not diagnostic. I also sit on the credentialing board for two major insurance programs in Michigan and I have advised both of them that they should no longer reimburse for those procedures without a explanation from the physician as to why that is to be performed.

This was taken from a transcript of Jill interviewing Dr. Matt Rosenberg on the early diagnosis and treatment of IC. The link for the rest of the article found on this site is: http://www.2006icpatientconference.com/rosenbergtranscript.html
This was dated June 2006 and doctors are STILL recommending that those procedures be done for diagnosis of IC!!! :tsk: We need to keep getting the word out and sharing this with our doctors! :help:

[formom]

Thanks Karen, I am going to check this out. I felt better before I had the cysto/hydro personally but then again that was only 3 weeks ago today. I don't want to knock it for anyone else.

[ICNDonna]

Hydrodistentions have enabled me to live a normal life in spite of IC. I do know there is some difference of opinion in the medical community about how best to diagnose IC. I feel fortunate that I was diagnosed by having a hydro; otherwise I would not have known that the procedure alleviates my symptoms for anywhere from six months to just under two years.

Donna

[TWINBURL]

I have had bladder problems for 10 yrs and only recently been diagnosed with IC. My doctor wanted to do a hydro and I was ver scared after reading a few things hear and doing reasearch for my self it was very scarey to me.

I have to say it was the best thing I ever done. I know that is not true for everyone but I would do it again in a heart beat and would not be able to if my insurance company would not pay a portion of that.

[Claredale]

If there is one thing we can count on with the info we read on the internet is to get conflicting information since other well known doctors that are very knowledgeable regarding IC have the other opinion. That is why it's important to remember that we all respond to treatments differently. I have found in doing internet research that you can find people that stand on both sides of any issue regarding anything.

I am one of the ones that the Hydro did not benefit in relieving my pain or freq/urg, but I am very thankful that I at least had the 2 I had for the diagnostic side. The first hydro/cysto found that I had mild to moderate IC and my doctor and I knew what we were dealing with. Ten years later, my pain was so much worse and my doctor was able to identify that I bladder was much worse and I was in the severe stage.

Tracey

[formom]

That is why I said I would not knock it because alot of people do benefit from it. The procedure itself was not bad at all, I was in no pain from that fortunetly, but unfortunetly I don't think but I am only 3 weeks post procedure, that it didn't benefit me. It is great to be diagnosed and see how severe it is though. I will continue to keep my faith and pray for everyone!

[SandyRN]

I'm not sure why this is so controversial but I'm grateful for my cysto/hydro as well because he got a REAL good look at my bladder, and after I recovered I knew there was no doubt whatsoever what I had. I also got some temporary relief from it and it was VERY welcome at the time.

I don't regret having mine done at all and would do it again as long as I have the time to recover without having to go into Mommy mode the next day.

[karen10]

I know for those that have had IC for a long time -- it has been helpful to many!!! I'm just providing info for those that are new to IC and have been told that it's necessary for DIAGNOSIS (that's what the article says), which today it's not. He did say it CAN HAVE treatment benefits. Also, just to clarify, this wasn't found on the internet, it was found in an actual medical journal (from the medical library at the hospital), and the link is to a transcript of an interview that Jill had with one of the doctors/researchers who continues to be at the forefront of new IC research. Hope that's helpful! I know how I felt when I was looking for answers and then newly diagnosed, and that's who I was trying to help with this info!! :smile tee I personally appreciate everyone's opinion -- it helps to hear all sides because if something works for one person, it might work for another!

[SandyRN]

I've read the transcript before, just wanted to add m 2 cents worth. I guess at the time I was desperate to find an answer and I've never regretted that I did it. It gave me a sense of peace, along with a sense of horror, to know for sure what I had and to know that the doctor didn't SEE any cancer or anything that will kill me.

[karen10]

Sandy -- I know EXACTLY what you mean!! I was like hooray, I know what it this is, and then I cried for the next hour! I just feel I am one of the lucky ones when I read everyone's stories here, and to see what they've been through! If I can save just one person from that kind of pain, either living in pain for months or years and not knowing (still happens) or going through a painful procedure because you might have an old school uro that is using the info that was published 20 years ago! We all say we want new research, but then when it comes out, it seems so many have such a hard time accepting it!! :smile tee I have a wellness center for IC and I work very closely with my doctor who specializes in treating IC. She and others have said there is definitely a resistance from the older school uro's to accept some of the newer research. One (young) woman came to her and she was suicidal at that point, because her uro (who was older and is known in the area for his older methods) told her there was nothing he could do and she would just have to learn to live with the pain!!! It makes me so sad and angry at the same time!! We HAVE to be part of educating others because no one is more motivated to get the word out than us, the IC patient!!!

[mbhbarb]

Karen, thanks for sharing that. The more information we have the better able we are to make an informed decision about our own healthcare. I haven't gone to read the article yet to see how they recommend diagnosing IC. I am concerned though about the potential of insurance companies refusing to cover it as a diagnostic tool. My doctor did it to diagnose my IC in September and I am grateful. It put me into remission which I am still enjoying. It also revealed a suspicious lump (biopsy ok) that will need rechecking next month. With as much pain as I was having, though I was frightened of submitting to an invasive procedure, I also wanted someone to look inside my bladder to be sure nothing else was going on.
barb

[SandyRN]

I agree with you. My uro here in town mostly treats men. He has fliers in his office about prostates and impotence, but nothing for IC. I became too much for him to handle and he sent me to Dr. Evans who is about an hour and a half away. Best move I ever made! Now I see my regular doctor but we have a plan. He DID suggest another hydro to me because I'm having a bad time bladder wise, well, all over body wise really, and I hesitated because it DOES take time to recover from, especially for those of us with fibro, muscle and joint problems. I thought I was dying and not so much from the bladder pain, but from the body pain. I felt like they'd twisted me like a pretzel on that table when they put me to sleep.

Like I said, I would do it again for a few months worth of relief, but only on the condition that my ex had my kids for at least a week. I do agree we need more research, but sometimes the old standby's are things that consistently work for some, not all, but some.

I'm really not disagreeing with you at all. :)

[karen10]

Thanks for sharing because I haven't had the really bad pain and haven't had to face the idea of that being an option yet! I am so open though to try anything that works! I also wanted to make sure I did clarify that this particular article/transcript was on DIAGNOSIS, and not about treatment. That Dr. Rosenberg wasn't disputing, it definitely helps some people. I'm just soooo committed to researching and then sharing what I learn. I have a huge file full of all the things that people are using that they have found to be helpful!! :smile tee I work with people with chronic pain/illness so it's helpful both personally and professionally!

[Claredale]

Sandy, just because you mentioned the concern about the insurance company deal, I just called my doctor's office to see if they are having any problems having hydros approved and she said she hasn't seen any problems, but I am in TN and I have Cigna and so far (knock on wood) I don't have any issues with having procedures approved.

I would be interested to see what the option for diagnosis is instead of hydro. The reason why I am asking is because I am doing so much better and for some reason, I keep thinking would just like to see if the damage is still as bad as several years ago when I was diagnosed with severe IC. If there is a non-invasive way, then maybe that could give me the same info. I am going to ask my doctor about it at my appt next week.

[karen10]

Barb--I hear you about the insurance. Mine had to ask for more information before they would pay it, but hopefully as it grows in popularity it will become a common procedure and easily recognized by insurance. Again, we need more research and more doctors to support this. (I guess I'm really on my soapbox today :smile tee) Another thing you will find in the transcript is that he feels the "old IC guard" as he calls them, is holding up the research. Check out this segment from it:

"JILL OSBORNE - Meona asks "Do you feel that there is enough research currently being done on IC??? What barriers are researchers facing right now??"

Dr. Rosenberg - No, there is not enough research being done. My personal feeling is that the members of the “old school” approach to IC are blocking progress. I recently was at a lecture at a major meeting on IC and was listening to a fellow. He's a member of the "old IC guard" and his slides would have made a good wine given their age.. They were old and they were wrong. The prevalence data was a problem. And, again, until we understand that the disease is more prevalent we are blocking research knowledge.

It is important to go shake the bushes on this one. We have to let people know that there are lot of people suffering with this. This is the way of the world. If one person has the disease, no one will help. If more have the disease, more will help. Even though we have published numerous papers on the prevalence, the old guard isn’t recognizing it, and, unfortunately, they influence the NIDDK grants."
Taken from: http://www.2006icpatientconference.com/rosenbergtranscript.html

I don't know about you, but that's makes me mad! :mad: So let's go "shake the bushes!" :smile tee

[mbhbarb]

Karen, I am so grateful for you and the others on the network who research and share what they find. I know it isn't your opinion, that you are just sharing it, but it is interesting that it has sparked this discussion.

Just to clarify, I am grateful for the hydro/cysto as a diagnostic tool because I got it very early. My uro/gyno told me that he uses hydrodistension as a treatment only as a last resort, after everything else has failed. He does elmiron, other medications and pain meds, instills, etc. first. Had I been forced to follow that protocol I most likely would have missed the last few months of being nearly pain free, I would not have known about the other lump (if it is not a tumor he thinks it is an adhesion and in either event may be adding to my symptoms), and I would be taking a lot of medication that may or may not help me.

My perspective is a very personal one, not a medical one, so from a doctor's view it is probably not valid. As a patient who has benefitted, though, I feel comfortable sharing it. I also recognize that it's a gamble because for everyone I read about who was helped I also read about those who were not. With IC there seem to be no easy answers.

Thanks again. I look forward to reading more.

barb

[karen10]

Tracey -- I have a copy of one of the newest articles right in front of me and here's what it says "To confirm the presence of IC, the PST (potassium sensitivity test) can be administered. The PST has been used to validate the PUF score for IC screening. For patients who present with pain of suspected bladder origin, an alternative to the PST exists. The anesthetic bladder challenge (ABC) is a test for which the patient is catheterized and administered an intravesical anesthetic cocktail that contains alkalinized lidocaine. Dissipation of pain upon instillation provides empirical evidence that the bladder is the site of origin of the pain."
Taken from Urology 69, April 2007 "Prevalence of IC in a Primary Care Setting" by Matt Rosenberg, MD; Shari Page, and Matthew Hazzard.

However, this was all written for diagnosing new IC patients. To actually look inside the bladder, you need a cystoscopy. Also, most articles you read on diagnosis will say that there is no true test for diagnosing IC. Ultimately you have to go by the symptoms, the history, ruling out other problems, and the response to treatments. Sigh . . . hopefully one day!

[karen10]

Barb -- thanks! I think that's why this site is sooo helpful because people do share their personal stories which may or may not be different from the "norm" (if there is such a thing with IC!), but it might be just what someone else needs to hear! So glad you did it too, because in your case, you did find a lump! :smile tee

[Claredale]

Well, if it still involved a cath, I won't do it to prevent a chance of another flare. I am doing so much better and just want so bad to know if my bladder actually looks better than it did when I was diagnosed with severe IC. During the day, I don't even remember that I have IC, except with what I eat of course. I guess since some foods still bother me, my bladder must still have issues.

I am just glad to be where I am and hope to keep heading that right direction. It's been a ride for too long!!!

[Charisse]

For those who got relief from the hydros, how long afterwards did you start to notice improvement? Was/is it immediate or delayed for a few weeks? I found the hydro to be painful and I didn't start feeling really good until a little over a month after I had it done. I also started Elmiron and the IC diet the day of my hydro so it would be hard to know for certain what helped me the most but I think it was the Elmiron.

Also, while on this subject of diagnosis, I have always wondered if insurance companies might not cover treatments like instills and Elmiron without some sort of invasive diagnostic test like a hydro or PST?

[SandyRN]

It was SEVERAL good weeks before I felt any relief. I was pretty miserable all the way around and if my bladder felt good before 3 weeks I sure didn't know it! It lasted about 3 months for me...wish it had been longer, like forever!

[annabella22]

Hi Charisse,

I never had a hydro, cysto, or a pst test, but my doctor feels comfortable giving me a diagnosis based on my symptoms and responses to treatment. Because she gave me the diagnosis, my insurance covers all meds and instills without a problem.

[HistoryKat]

I'm a little confused ....

I thought the hydro was when they stretched your bladder by overfilling it. I didn't know it could be a diagnostic procedure. The Doc diagnosed me after putting in a cath and filling my bladder with one type of solution, drained that, and then filled it with something else (he actually said they were but damned if I can remember that!). I had a LOT of pain with the second solution and that was how they diagnosed me.

[mbhbarb]

Charisse, After my hydro my urethra was sore for a few days. Pyridium helped with that. I had expected to have terrible bladder pain after the procedure since my bladder had just been stretched and it hates to be messed with, but the opposite was true. From the moment I woke up from anesthesia it was is if a miracle had happened. Previously not only had I had terrible pain, but even when I wasn't hurting too badly my bladder did this thing I refer to as flutter. Almost like hiccups - I always knew it was there. After the hydro, no flutter and no pain. It's been two months now and I still have no flutter. Once in awhile I have a little pain, but not the debilitating terrible pain like before. Just twinges. I'm back in my life again and grateful every day. We're all different, but that's my experience. I wish it could be like that for everyone.

barb

[Claredale]

I copied this off the patient handbook. Hydros are used in diagnosticas well.

Because some patients have noted an improvement in symptoms after the bladder distention done to diagnose IC, the procedure is often thought of as a treatment in itself. Bladder distention involves filling the bladder with water (while the patient is under general anesthesia) and letting it expand to a degree that is too painful to achieve while the patient is awake. Often the bladder lining bleeds. Researchers are not sure why distention helps, but some believe that the procedure may increase bladder capacity and interfere with the pain signals transmitted by nerves in the bladder.

[karen10]

HistoryKat -- it sounds like you had the Potassium sensitivity test (PST). That's what I had as well. The second injection was the potassium mixture, which is a big bladder irritant. My doctor explained to me that in a normal bladder, there would be no reaction at all, but in an IC bladder, the theory is that the mucus lining is ineffective and the potassium gets to the actual bladder wall, which causes the pain.

[Charisse]

Well now I'm wondering if my decrease in pain was due to the hydro or the Elmiron? I have been thinking about stopping the Elmiron just to test it out but I don't want the pain back!

[sandberg4]

Does anyone know how much the hydro cost? Do you go as an outpatient?
Thanks
Anne

[ICNDonna]

A hydrodistention is usually an outpatient procedure. I don't know about cost since mine are covered by insurance.

Donna

[mbhbarb]

I live in California and everything here is expensive so it may be less in other places. My hydro cost over $22,000, at least that is how much the hospital billed my insurance company for. The doctor had a separate bill. It was done as an out-patient procedure. I had a spinal and a general (because there was some issue with the spinal) for anesthesia. Even though my insurance paid for most of it, my out-of-pocket cost was about $1,000 between the co-insurance charges for the hospital and the doctor.

barb

[lan]

Karen10 - I agree that it is important for all of us to know the pros and cons associated with diagnostic procedures so that we (along with our doctors) can make educated decisions about our health care. I agree that some doctors are moving away from using Cysto with hydrodistention and PST for diagnosis due to their desire to "do no harm". In the spring optimist newsletter Dr. Moldwin states
"For example, some of the earlier methods to help diagnose IC relied upon stretching of the bladder (i.e.hydrodistention) or the placement of
caustic agents in the bladder (i.e.potassium). However, today, we have
less traumatic methods of evaluation that can be used." He does not give any details about the "less traumatic methods" in this article but in the recent radio interview he mentioned injecting lidocaine to see if it reduced bladder pain as you describe in one of your prior posts. The information that my IC specialist gave me also indicates that it is possible that the glomerations seen in IC patients undergoing hydrodistention may not be the cause of IC symptoms. It states
"We have speculated that they (glomerations) may simply reflect the response of the bladder to distention after a prolonged period of chronic underfilling because of sensory urgency, rather than result from a primary pathologic process." I understand that this is clearly "speculation" and other researchers may believe that glomerations are definite proof of IC. But it is important for us to do our own research. In my case, I had an in-office cystocopy (without hydodistention) to rule out cancer. The in-office cystoscopy showed mild inflamation which my uro did not think looked like IC but after I did not respond to antibiotics I was sent to an IC specialist who diagnosed me based on my symptoms. I do not dispute the use of the hydro for treatment (especially after reading how many of you it has helped!) but I do agree that it is important for us to do our research when deciding on how to go about diagnosing IC. Linda

[karen10]

Ooooh Linda, thanks for sharing! I hadn't read anything about that theory before. That's very interesting to me that the glomerations may not be a result of a primary pathologic process! I hope they do more research on that as that theory really seems to change the way we view IC. In fact, historically it was the presence of glomerations that was the hallmark of an IC diagnosis! I have wondered if there are different types of IC, because I don't have the frequency, and only occasionally have the urgency, and therefore don't have the problem with the "chronic underfilling." The urgency is very well managed with diet for me. What I do have is the chronic pelvic pain which is relieved by bladder instillations, which according to this and what I've read, indicates that the pain does stem from the bladder! :smile tee Can you give me the source of that info--I'd like to read more about it!

[lan]

Karen,
The information I posted is from a photo-copy of Chapter 10 titled Painful Bladder Syndrome/Interstitial Cystitis and Related Disorders and written by Philip M. Hanno, MD, MPH. Unfortunately he just gave me a copy of chapter 10 and I don't know the name of the book! Chapter 10 includes pages 330 through 370 so it looks like it is from a very big book! It is also very difficult reading which is frustrating to me - sometimes I need to read a paragraph several times to make any sense out of it. If I can figure out what book it is from I will let you know. I am off to sleep - When I come across these interesting topics I end up staying up much too late...Linda

[Dreamlove15]

I had a hydro done almost 3 weeks ago and all its done is give me a severe infection. And as for the relief part, haven't had any yet. I don't know if I will? its up in the air right now. But right at the moment I dont think i;d do it again and I wish there were other ways my urologist could have diagnosed me...im in more pain than before.:(

[lan]

Karen,
Wow. I was able to find the name of the book in a matter of seconds (these search engines (like Google) never cease to amaze me). I found the book on this site
http://www.painful-bladder.org/books.html
and the name of the book is

Campbell-Walsh Urology
9th Edition published December 2006 by Saunders Elsevier
Chapter 10: Painful Bladder Syndrome/Interstitial Cystitis and Related Disorders by Philip M. Hanno MD

I hope that you are able to find the book in your library because it sells for $450.00!

Linda