Bladder Necrosis Following Hydrodistention

[icnmgrjill]

While hydrodistention is generally believed to be safe and is often used as a treatment for interstitial cystitis, an article "Bladder Necrosis Following Hydrodistention in Patients with Interstitial Cystitis" released in the January 2007 Journal of Urology describes a rare and devastating complication, an almost total "necrosis" of the bladder wall that occurred in three patients. Necrosis (aka tissue death) occurs when blood supply is insufficient.

Who? One man and two women between the ages of 29 and 46 had a long history of IC symptoms and had previously experienced hydrodistention with "some therapeutic response."

How was it discovered? In these incidents, both women reported severe abdominal pain immediately after the procedure. The man reported pain after his foley catheter was removed. The pain was severe requiring narcotic pain medication. Additional examinations revealed debris in the bladder. Surgical exploration discovered that the necrosis had occurred through the full thickness of the bladder wall (sparing the trigone), leaving fragile gray tissue behind. The pathology report suggested that tissue death occurred due to an obstruction or destruction of vessels supplying blood to the tissue.

How was it treated? For the two patients who underwent surgical exploration, all gray tissue was removed until healthy bleeding tissue was found. Each patient then underwent an augmentation cystoplasty. The man, unfortunately, refused further treatment and was lost to follow up.

Are complications common? The complications from hydrodistention procedures are poorly documented in the journals. According to this article, the most common are gross hematuria (bleeding) and bladder perforation. The authors state that "Bladder perforation occurs in 2 to 8% of cases and it is more likely to occur with prolonged distention and/or after biopsies." This article is the first case report of almost total bladder necrosis though one additional article revealed a case where a small area of necrosis was found after hydrodistention.

Why did it occur?? The authors report that necrosis is an unsual and rare complication and that the cause is "unknown." They suggest that the hydrodistention may have obstructed blood flow in local blood vessels of the bladder. Apparently some animal studies have shown that blood flow can decrease depending upon the volume of water used in the procedure and pressure that occurs. The authors further note that two of patients also had a chlorpactin instillation which may have contributed.

Conclusion: IC patients are often frightened by the concept of having a hydrodistention. Luckily, a hydrodistention is now less frequently used to diagnose IC/PBS in favor of other less traumatic methods such as the PUF questionnaire. But it does have an important use. A hydrodistention is required if a physician would like to conduct a biopsy. Hydrodistention clearly has some risks. At a minimum, this article suggests that combining a chlorpactin treatment with a hydrodistention, especially if the bladder has sustained any injuries during the procedure, may be unwise. The use of higher volumes and pressures during the procedure may also be a risk factor.

Dr. Deborah Lightner of the Mayo Clinic provided an official editorial comment from the Journal of Urology at the end of the article that captures our viewpoint as well. She says "Given the lack of placebo controlled trials of cystodistention or of chlorpactin for PBS, it behooves the surgeon to first do no harm." She and the authors reiterate that distention is no longer diagnostic for IC/PBS and is rarely therapeutic in the long run. Makes sense to us!

Source: Zabihi, N. et al. Bladder Necrosis Following Hydrodistention in Patients With Interstitial Cystitis, Jurol, Vol. 177, 149-152, January 2007

[Trishann]

I wonder if it makes a different on the severity of the bladder. I wonder if doctors that aren't really capable to do this hydrodistention are doing it instead of professional surgeon who knows exactly what to do and when to stop. Like these instillation where doctors was over doing the amount and causing more harm. No wonder people are getting afraid and also doctors too and trying the easy stuff first. I am glad I said NO to some things when I felt it in my heart because I found out it would do more harm then good.

But I also think sometimes you have to take a chance because there is nothing more you can do.

I am glad that everyone is being more cautious about doing different things, but sometimes you are afraid to do anything. I think that is where the doctor and you need to commuicate well, and also the doctors will listen to what is being said when you speak.

Thank you Jill,
Sending hugs, Trishann

[MakinIT]

I take it Clorpactin is a treatment? i've never used it, to my knowledge...I have installations, that I've stopped, because they always send me into a raging flare. Don't know why...simple meds...steroid, heparin, and marcaine ''shrug''. Anyway...as far as diagnostic, I agree alot of people likely don't need need the distention. But had they gone with just a quick in office sneak a peek into the bladder,They would not have seen much at that time. A few glomurations, but not diagnosabable. they got my waking bladder hold (a little over 100ccs). WhenI was knocked out, they couldonly fill to 450 ccs, got a little blood, again glomurations. When I awoke the doc told me this, but being conservative said he didn't think so. However, the Biopsy was off the charts for Mast cells so he had to call me back at the end of the week and hem and haw before he said I haid it. SO...I think the distention, as much fun as it , is a necessary evil. But, I'm just me. : )

Thanks for the report, it was interesting

Tracey

[green_the_fish]

I dunno, I really think the clorpactin instill might be the culprit here. I didn't even know they did those anymore. I thought they were found to be very painful, and also real hard on the bladder, kinda like that silver nitrate stuff. It seems like whenever they try to hurt the bladder to get it to heal itself, like they did with that modified tuberculosis instill, it doesn't end up working for most people. What ends up working are the soothing instills like heparin.

You know, I have heard some weird stories about cysto+hydro procedures in the past. I remember hearing once that, if the uro puts too much in, the bladder will explode. I guess I have a hard time believing stories like that, though. I never talked to anyone on the boards that experienced anything like that. Then I can't help thinking of all the people like Donna, who have had cysto+hydros done on a regular basis over an extended period of time, and have never had any issues with necrosis.

It is important, though, to keep in mind that all surgical procedures do involve an amount of risk. Some people don't really think of a cysto+hydro as "surgery", because it's such a quick procedure that usually doesn't involve any incisions... but it is still surgery. So, thank you for posting a word of caution. Hopefully, this will motivate people to seek an open discussion with their doctors about the risks of these procedures, even if they are considered only "minor".

[leelee88]

I agree that complications are rare from a hydro/cysto, but I just happen to be one of those rare cases, After the proceedure was done I was in SEVERE pain. The pain meds they gave me didnt even touch it. I went back to the hospital that night and they did and x-ray and found that my bladder had tore and was leaking. The URO said it was because my bladder had a weak spot.. Well that theory is under investagation right now..Question is ...Was it a weak spot or did URO punture it while taking the biopsy?

Thank God it healed, but now I am more pain than I ever was before.....

[green_the_fish]

Oh wow, Ronda! I'm so sorry you had to go through that :grouphug:

Usually, when I hear about complications, they tend to be stuff like bleeding over an extended period of time, or severe pain after treatment. But they usually go away after a few weeks, and no permanent harm seems to have occurred.

Well, I guess I do know someone who had very serious complications now!

[leelee88]

Yup... that would be me.. I am just glad my hubby made me go back to the ER that night, because if I hadnt theres no telling what would have happened, esp with my bladder leaking into my body...

[jen74]

Wow, that is really scary. I am soooooooo glad I refused to do the hyrodistention. I am sorry, but it cannot be good to blow up the bladder beyond it's holding capacity(not even in a healthy person without IC). This is just not natural!! Of course you bladder is going to bleed, heck anyones would after being strecthed beyond it's normal state.

I dont who invented this test. The first urogyne I saw back in December wanted me to do the hydrodistention, and at first I said ok. Well, I set up the date to do it a week later. I went home and started researching this test and I called him back and said forget it that I was not doing the hydro, that he could do just a cystoscopy to make sure there was nothing else going on. When he did the cystoscopy, he said my bladder was extremely inflammed and vascular which is consistent with IC he said. So I guess I did not even really need a hyrdo to Dx it.

Now the urogyne I see now, she mentioned that I should have the hydrodistention, but hubby and I were adamant and said no that it is not a safe test to do in my opinion. She did not agree with me, but I just said that my gut instinct tells me I should not do it. She let it drop after that. I mean if it helps some people, that is great and I am happy. Like with any test, things can always go wrong. I guess it is up to us individually to see how we feel and if we think we could handle such a test. I personally did not feel that my body would be able to handle that. I already have a high pain level. I was positive that if I had the hydro done, my pain level would have been off the wall. That is just me though.
Jen

[msjennas]

Hello, I am new to this forum and I'd like to get some answers about the hydrodistention. I totally agree that hydrodistention sounds like a barbaric and dangerous thing to do to a woman's bladder and it cannot be a good thing. I have had a cystoscopy in the office to rule out cancer or ulcers, not necessarily to rule in IC. I'm certain I do have IC, but, my new doctor wants to do a hydrodistention to prove it. AKA, I don't think anyone I've been to believes the pain I have is real. I do not want to go through that. I started with IC after I had a uterine ablation two years ago. I woke up in horrible pain and it has continued throughout the two years, sometimes less than other times. Beleive me, I have regretted that decision every day since. I have had bladder instillations, which helped once for almost seven months, but, didn't help the second time. I have been on Elmiron for four months, Ultracet for pain, Elavil for pain, Singular (mainly for my asthma), and now I'm supposed to be starting Hydroxyzine for who knows what. At any rate, what possible good would it do to get a Hydrodistention, when, if they decide it is IC, they will still just give me the same drugs they are now?

[leelee88]

Your right why get it done if they are just going to give you same meds..
I wish I would have never had it done.. I wish I would have went with my gut feelings, I even went and got a second opinion and was told it was a very safe proceedure.

Now dont get me wrong, just because I feel it was a bad choice for me, amny other people says they have been a life saivor for them.. I guess thats because we are all differant..Good luck and God Bless:angel:

[msjennas]

Thank you for your reply. I'm going to phone the doctor tomorrow to tell her I'm not going to have it done. I'm just dreading the confrontation. I've done a ton of research on this disease and the "discomfort" I have and really there is nothing else that could cause this besides IC and cancer. I've had every test imaginable, including CT Scans....colonscopy...ultrasounds, etc. There's nothing there, just constant burning.

[MakinIT]

Very interesting and terrible (in the case of Ronda :shake: ) things to think about. My uro (I had at the time) when I watched him do the inoffice distention, as soon as the water going into my bladder went from a steady stream to a dribble he stopped it. I was starting to feel pretty uncomfortable but he got the reading. When I was under, as soon as the dribble became drops he immediately stopped. (I am hoping, at least that was what I was told..) when the water came out, he could see the "terminal pinking"...(as I said, he really didn't like to "pin this awful disease" on anyone so he was playing conservative) From where he could see the bladder irritated, he took biopsys. (ouch) But he told me in the hospital he didn't think I had it. I'm just trying to figure out how he would have gotten it would it not have been for the distention, and I do know some people have had relief from distention. (I for one would not want to undergo that again...but I do think I was cared for, but what do I know, I was unconscious!!!) That uro did refer me to a very good female urologist who has become my buddy, although we disagree on some aspects of treatment. (The fact that she let's me disagree without getting her panties in a wad has made me respect her 100% more)
Anyway, do what feels right to you. I know for me, I had to do all the hoop jumping because I had to keep all my disability beni's; (from work, then to apply for social security) You certainly have to have trust in your doctor for this kinda stuff. So many uro's are such .....MEN. I've seen about 5 and most spoke down to me like I was an idiot except for the one who did my distention and the one who is my current doc.
You don't have to do anything you aren't comfortable with!!!

[ICNDonna]

I can't imagine what my life would have been like over the past 32 years without hydrodistentions. I had number 40 in February 2006. I absolutely know there is some risk --- there's risk with any surgical procedure --- but when I get relief for as much as a year or more from having it done, I will go for it. The pain can get pretty awful before a hydro and I seem to always put it off as long as I can, but the relief, for me, is worth the risk.

It's a decision each of us has to make and I think it's important to know the risks so we can balance the potential for benefit against those risks when we are deciding.

Donna

[Zygala87]

I am so sorry to hear of the pain people have gone through due to hydrodistion. I am much like Donna and found it was the only relief I was able to get. I went from a 10 in pain down to a 2 and have stayed that way so far since July 06. A GYN did the hydro and did a great job. My Family DR. sent me to a Urologist who put me on elmiron. He said he would also do another hydro if I needed it. Now I am wondering , after reading the horror stories here, is when I need another hydro, maybe I should go back to the GYN who did it in the first place. He is very busy delivering babies, he sure does not need my business but I think I need him. I don't even know if he would take me back. I guess the Dr. doing the hydro is what seems to be most important in getting it done right. Ziggy

[HGC]

I am like Donna as well - hydros have been part of my treatment in the last 15 years (I have had 11 of them) and I can't imagine my life without them. In my opinion the fact that they put Chloropactin into a bladder that has been distended is barbaric - why would you instill anything into a bladder that has been distended?

[jen74]

I have heard a lot of awful things about that chloropactin. I would never have that done.
As far as the hydrodistention, this is a choice only you can make. It is evident that it has helped some people. I myself dont like the idea of over stretching an already hurt bladder. That is just me though. I also am one of those people who tends to get all the rare side effects that could happen, or least with most meds I do. I have to be very careful. For instance, ranitidine(zantac) a simple benign stomach med sent me to the ER with tachycardia.The doctor said that was pretty rare. Go figure.
You kind of have to go with that gut instinct. I know that is hard to do. For me, I always have a bad feeling about everything doctors recommend since I have been misled and screwed up by them so many times, I have a real hard time having any kind of faith in any of them.
Bottom line is, you know your body better than anyone or any doctor out there. If you dont feel comfortable doing the hydro right now, then dont do it. You could always have it done at a later date if you change your mind. Maybe you can try other avenues first.
Jen

[msjennas]

Thank you. I, too, am one of those people that seems to have all the rare side effects or I fall into that 10% that have complications. My gut just says no. My gut said no when I got the uterine ablation, but, I did it any way and here I am now with a condition far worse than heavy bleeding and cramping. I'm going to try Pelvic Floor Rehabilitation and Stimulation for six weeks and continue with the meds. Does anyone have information on this physical therapy?

[Sarojini]

As a scientist, I have a lot to say about this study, but I am going to refrain from doing it.

Instead, I would like to extend some :grouphug:s to those who have had complications during a hydro; I am so sorry you all had to endure that kind problem.

I would also like to encourage those who are new here and/or thinking about having a hydro done to read ALL of the research available, as well as both the positive and negative posts on these boards regarding hydros. Please do not base your decision solely on this particular thread or this particular study, as there are as many people who have had a good outcome as have had a terrible outcome.

Just a reminder to always weigh your options regarding your healthcare with an open and rational mind, rather than make a decision based on emotions evoked by stories that either thrill or terrify you.

[leelee88]

I agree Briza..If anyone has decided to have this proceedure done ask your dr if you can stay over night, that way if there is any complications you will be right there..
As for me I was sent home to, right after the surgery, if they would have let me stay overnight they would have found out right away what was wrong and could have treated me alot sooner...

[msjennas]

Thanks for the reply. I'm not going to have it done right now as my gut just says no. The real question I have is what is the purpose if I have already had a cysto that ruled out cancer and the ulcers and I am already on all the meds my doctor would prescribe anyway? There, of course, may or may not be a benefit from the hydro for a short period of time, but, there may or may not be problems that could occur as result of the hydro that would be worse. So, for now, it makes more since to continue with the meds and start physical therapy. Thank you again for your input. Wouldn't it be nice if when we woke up in the morning there was this list before us that explained exactly what would happen to day and the outcome with a "No decision making necessary today!" message posted to it. :)

[HGC]

My Dr. always keeps me overnight when I have a hydro and I usually end up staying 2 nights with a 3 way foley with continuous bladder irrigation and a PCA pump for the pain.

[jen74]

Doesn't having a cath in after that procedure cause even more pain?
And wow, I could not believe when I read that they put in 1,275ml of water to do that hydro on you Briza. Thay is just crazy!! This is why I wont have that procedure done. You dont need this procedure to check for cancer, a regular cystoscopy will detect cancer and you can have a biopsy without doing a hydro, I am pretty sure.
Besides, after they blow your bladder up like that, who knows if all of the damage they are seeing was there, or was some of it actually caused by the hydro? I wonder.
Jen

[MakinIT]

OMG 1275 ml of water is what a typical bladder holds and I think that's a mans bladder. No wonder people are so scared of this, and to put an irritating agent in as well. Might as well just pump a solution of saltwater in there.

After my distention, I was still very groggy...I ate a graham cracker and was sent on my way home.I think I drooled in the car all the way home. Wasn't the first time my husband had to pour my out of the car, lol.

[ICNDonna]

I have always spent a night in the hospital after a hydrodistention. And I have a catheter overnight, which allows me to sleep through the night without any bathroom trips --- pure heaven.

Donna

[Trishann]

Wow, I think maybe you better check with your insurance company about staying overnight. Some consider it as outpatient surgery. Maybe there is a way around it. My was always approved as outpatient surgery.

Hugs, Trishann

[MakinIT]

Well, Donna's insurance must cover it (or Donna pays for the extra TLC) but as far as a night with a Foley in....whenever I've had one in, I feel like I have to pee the entire time it in, in fact I feel like it is a horrible case of "oh my god, let me go". The nurses always smile calmly and say "its normal to feel a little discomfort". Discomfort my butt...

Anyway...I am glad you get the medical support you need Donna. Like I said, for me...it's "don't let the door hit ya where the good Lord split ya".

Tracey

[ICNDonna]

Actually I'm in the hospital only slightly more than 24 hours so I'm still considered outpatient.

Donna

[msjennas]

Hi Everyone, I found this information today and thought it was quite interesting, so I'm sharing it. The web site associated with it is below:

"The previous "gold standard" test for IC was the use of hydrodistention with cystoscopy. Researchers, however, determined that this visual examination of the bladder wall was also not specific for IC and that the test, itself, can contribute to the development of small glomerulations (aka petechial hemorrhages) often found in IC. Thus, a diagnosis of IC is one of exclusion, as well as a review of clinical symptoms.

More recently, however, Elmiron has been studied as part of a "rescue instillation" which is placed directly in the bladder and can, perhaps, provide better effectiveness. C. Lowell Parsons has presented a research study which shows a 90% effectiveness in reducing the symptoms of IC patients by using this instillation.


In the IC treatment model, Elmiron is typically part of a multi-modal therapeutic approach which also includes an antihistamine (hydroxyzine) and a low dose anti-depressant (amitriptyline) to jointly combat inflammation in the bladder. Clearly, an oral application of Elmiron may not be as effective as the use of Elmiron in a bladder instillation."


http://en.wikipedia.org/wiki/Pentosan_polysulfate

[Trishann]

Donna that is great. It sounds like you have a good doctor and this surgery really helps you. If I had something that would help me like that, I definitely would take that chance and continue to do it. Hope you continue to have good results from it.

Hope you have a nice day,
Sending hugs, Trishann

[sacausa]

Okay, firstly I'd like to say that knowing that ICNDonna stays overnight with a cath in shines a lot of light for me personally as to why her experience with hydros have been so positive. I seriously think that having a cath in for a bit of time is not a bad idea whatsoever. It gives the bladder a bit of time to recuperate... Personally, I had a horrific experience with the cysto/hydro/with biopsy but I didn't stay overnight and I woke up from the anesthesthia without a cath. I was in horrible pain for months afterwards and the first two weeks was completely unbearable. I seriously think I was worse off afterwards than I was before. Maybe if I had a cath in for a couple of hours after the procedure my experience would have been greatly diffferent?

Secondly, I think that the very POSSIBLITY of necrosis from the hydro is absolutely alarming! I already knew about the possibility of the bladder wall being punctured and the risks of anesthesia etc... but this just takes the cake for me.... I mean with this there is a possibility of losing your bladder?!

Ok, I seriously do NOT understand why people would still be undergoing this procedure for diagnostic purposes if there are such obvious risks involved. I mean these are fairly serious risks for predominantly diagnostic procedure. I understand why people would repeatedly go back for this procedure for it's therapuetic benefits but not for the diagnostic purposes. I would take risks anyday for a procedure that will literally save my life (not only improve the quality of it) like if I had a tumor on my spine and there is a risk of paralysis involved; but that would be for a life saving procedure not a diagnostic one.

Also, who cares if it's 1 case in 1 million... I know that it wouldn't matter to me if I ended up as a 16yr old without a bladder.

[miz_sunshine87]

I felt so sick when I read about all this.

When I had my hydrodistension done about 4 years ago, my doctor never really gave me much of a choice. She just said "this is what needs to be done to see what is wrong with your bladder." She didn't tell me about the risks involved, nor did she tell me about the pain and retention I would likely experience (but I do remember signing the "wrongful death form", so if I die I can't blame you, great).
Oh and let me tell you, the pain was by far the worst thing I have ever experienced. As soon as I proved that I could void (oh that was not fun), I was sent out. I couldn't even stand up I was so sedated, but the pain was already unbearable. I think they lied when they said they gave me morphene.

After the fact, I felt betrayed, and now that I really know the risks, even more so. She was like a sly used car salesperson.

That said, I think that my hydro may very well have been what put me into remission. While I felt terrible for a week or so, I began to rapidly improve thereafter. Within a 2 months I was in complete remission, and remained that way until recently. Sure I was put on medications too, but I don't see how they could have worked that quickly. Of course maybe it was just a spontaneous remission and it had nothing to do with the hydro or meds.

In any case, regardless of the risks, and the pain that I previously experienced, I am seriously considering undergoing another hydrodistention. I have yet to go on Elmiron, but if that doesn't work, or I get worse, the hydro may be the only logical option.
However, I will never go back to my old urologist. While I suppose she could have been worse, I would prefer to find a doctor that would take the time to be truthful with me. I might have only been a 15 year old girl, but I still had a brain, and should have been told the risks involved in the procedure that I consented to.

[BabsG]

Ive been getting distensions for about three years. I stopped recently because they were not helping me for any length of time. I was reading the post and was surprised that their could be complications with the procedure. Thanks for the warnings!

[sami4]

I have been a long time enemy of hydro distentions for diagnosis for anything other than a cancer. This was a very, very unpopular idea on the boards, but common sense tells you if you stretch a fragile bladder until it bleeds it means only that you went too far and probably caused damage and scaring. What part of stupid dont these people get?
You want an IC diagnosis? Get a PT test, go to a doc that treats on symptoms. There are only a few treatments for bladder pain and IC and how you get diagnosed does not change the treatment or the outcome. IC treatments are a hit and miss thing, some react to some meds and some to others.
When I suspected IC I went to three Uro's who all wanted to Hydro me and I would have none of it or them either. Some of the IC experts diagnose only on symptoms, if you have bladder pain, frequency, urethral burning and stinging, spasms, nocturia the treatment is still the same and you just have to hit and miss try them until you find one that works.
I am glad for this study and I bet the guy who published it had a heck of a time with the Uros as they make mucho money and insurance payments from these tests which tell them what they already know. Stretching and abusing anything causes adhesions, scaring and consequences. You want to be as kind and gently to that fragile bladder as possible.
Sammi

[HGC]

While you are certainly entitled to your opinion there are many people - myself included - who are helped by hydros.

[sami4]

Well, here is another of my delusional opinions: I dont think "a lot of people" have been helped by hydrodistentions. I think a more accurate statement is "a few people seem to benefit on a temporary basis from HD."
I think that is why the medical community is turning the other cheek on this subject and realizing it is doing more people pain and damage then they thought. Insurance companies are also refusing to pay for this procedure as they feel it does not alter the treatment protocol.
A sensible skillful surgeon would not fill the bladder so full and cause a lot of complications. But, a large number of Docs are neither that skillful or have the common sense to know any better and do it. The suffering, post traumatic stress, fear, and post hydro problems reported on this board tell you that most of these poor devils did not have an easy time of it and were not helped. The ones who report some temporary relief are in the minority and probably had sensible doctors who didnt blow them up like the Goodyear Bimp either.
Sammi

[rosey]

Well, I have to agree with Sami4 re the negatives of hydrodistention. I went in for this out-patient procedure, and ended up staying in the hospital because my catheter was running pinkish and the drs. were concerned. Two days later I hemmoraged (of course this happened at midnight on a holiday weekend with one uro running between 2 hospitals). They took me back to surgery to cauterize the bleeding, and I had 3 transfusions. I ended up getting out of the hospital 4 days later, and was so anemic from blood loss, it took forever to feel normal.

Rosey

[Berkshire Road]

For anyone who is considering the cysto-hydro solely for the purpose of a Social Security application, please know that Social Security accepts a clinical diagnosis by itself. This is specifically stated in SSA's ruling on IC. And I do know at least one person who got her SSD, never having had the hydro or the potassium test. So, you don't need to do it for that reason.

Since I've never had one, I can't speak to this question other than to urge you to please re-read Sarojini's post in this thread and give it serious consideration. She is, as usually, right on target.

[Moonheart]

Also agree.

I have only seen 2-3 people on this board state that the hydro did anything postive for them and the rest are very negative. I was made 100x worse by the hydro being performed on me.

[jen74]

Boy, I more I read on this hydro, the happier I am I refused to do it when my one urogyne I saw last year wanted me to do it. I did a little research on it and heard quite a few bad things on it. Well, after talking to my one gyne who is very smartm and been in the business for years(she even delivered me), she told me that the studies that were done on this test showed this test is not the gold standard like they want people to think it is.
People without IC had positive hydro tests. THe reason ; well, think about it, you stretch a bladder beyond it's capacity in anyone, it is going to cause some damage, even in the healthy bladder. Our bladders were not meant to be over filled at a fast rate under high pressure. It is not normal.
I myself dont see the logic in this test and would not want to go through it , especially after reading all the things that can happen as a result. Also, you DO NOT need to have a hydro to diagnose cancer. They can see that with a plain cystoscopy test. With that said, I think we are all entitiled to our own opinion on this test, and if some people get help from it, then I am happy for them, because that it what really counts, that we get relief any way we can.
Jen

[ICNDonna]

I have read from several different reliable sources that something like 50% of IC patients feel better after hydrodistention.

Donna

[Moonheart]

Not to be argumentative, but most likely that is a limited pool of polled patients. It's always 50% of the sample, which may be five, 10, 100...we don't know. These samples are never to be construed as representative of the actual population, how can they be? Jen knows this as a scientist. She's probably got alot to say on the subject. :)

[Grandma Susie]

4 days after surgery for Hunner's ulcers, my second in 6 mos. I had HORRIBLE pain that I took every pain med I had in the house and it didn't work. I called and they said to take muscle relaxers. I did to no avail. I ended up in the Emergency room and it took 4 morphine shots to quiet things down. Then was on 2 Percocet every 4 hours which was just barely holding it. Have had 3 instills every day since and it is much better. WHAT HAPPENED? My doc said her thought it might have been a crack in the lining. I heard this from one of the nurses.
Very scary!!!!

[sami4]

Well, if 50% of people that have been Hydrod improved, then how is it that 50% of the people posting on this board havent been improved?
Like the smart lady said 50% of 10 or 30% of 10,000 trials?
Sammi

[Moonheart]

Well, if 50% of people that have been Hydrod improved, then how is it that 50% of the people posting on this board havent been improved?
Like the smart lady said 50% of 10 or 30% of 10,000 trials?
Sammi


Unfortunately many studies quote their results in a way that is skewed to imply what they want people to believe. It's very misleading to state that 25% of people turned blue when taking a certain med. When in reality it was only 50% of their test sample, of four, and so only 2 people in the world turned blue. But when everyday people read the statistics, they think "Oh wow! Only 25% of all people turn blue with this med. I guess it's safe to try."
Which is just what the company wanted them to think. :tsk:

[ICNDonna]

Per Dr. Moldwin in "The Interstitial Cystitis Survival Guide" --- "One potential benefit of the procedures is that about 30-60 percent of patients will have some symptom improvement postoperatively. It seems that the patients who derive the most symptomatic benefit from bladder hydrodistention are those who have small bladders."

Frankly, I can't imagine how I could have made it through the last 32 years without hydros. I absolutely understand that some people don't benefit, but I would never discourage anyone from trying any treatment that could possibly help --- it could be the single thing that does help. I do have a small bladder.

Donna

[HGC]

I have to agree with Donna 100% - I can't imagine how my life would be without hydros.

[Moonheart]

I think someone would have to go through the utter agony of shedding the entire bladder lining and feeling like a razor blade was slicing through their bladder, then enduring acid poured all through the wounds.

I know it helps people, but what if that is very small compared to the number hurt? Should we continue to hurt the many to help the few?

[jen74]

I think that everybody is different. If the hydro helps some people, then that is great. I personally never went through the hydro so I dont know how it would be. I read some bad things about it and my gyne told me that it is so-so as far as diagnosing IC, meaning that they did studies where people without IC had a positive Hydro.
I think as far as using the hydro for IC improvemnet, well that is where the question is; will it help or make you worse. Noone knows. Everyone is different and will react different. Even the doctors themselves cannot tell you how you will react.
I also think it depends on the shape your bladder is in in the first place. If you have a very damaged bladder, then I would not got through this procedure. They stretch the bladder beyond it's capacity which could cause more harm tham good. It is kind of like if you had a bad cut and you pulled it apart and stretched it, think of what that would do. You would be in more pain right and possibly even get an infection. Or if a person has a bad migraine, and they put their head in a vice and strecth it, I am sure they would be in agony afterwards. I would think that this works on the same wave length.
That is just my opinion. There seems to be alot of debate on this hydrodistention. I only wish the doctors could get all of our opinions. I think that they are to quick to push these tests without even looking into the side effects that they cause for some people.
The bottom line is, everyone is different and we all react differently to things. Look, I did my first bladder instill using meds that are considered like a rescue instill that is suppose to help with pain and make me better. Well, after the first instill, I swelled up and could not even pee the stuff out. This reaction was obviously not normal as the nurse treated me like this seldom ever happened to anyone getting these treatments. So you see, everyone is different. You have to go with your gut instinct on things. WHen my urogyne wanted me to do the hydro, the first thing I did was do research on it. I read all the pros and cons and even asked my gyne for her opinion. I then decided against it, at least for now.
For the people this test helps, I am happy. I just do Not think it should be used as a diagnostic tool in IC since it is not as accurate as the docs like people to believe. There is no reason why they have to fill the bladder beyond it's capacity to see if there is damage. The results cannot be accurate. Our bladders are NEVER filled that way normally and are not meant to be. People who present with severe IC after a hydro, well you just dont know if it was the hydro that damaged your bladder even more from all that strecthing.
This is a tough thing and a tough decision to make as far as deciding whether to go through this test or not. I think it should be left as a choice in treating IC, but not diagnosing IC. Poeple could be diagnosed with IC based on symptoms alone usually. Also having a cystoscopy to rule out cancer would be advisable as well. That is just my two cents.
Jen

[Annie2]

This is not the first published study to question the value of hydrodistention, but is a very dramatic worst-case scenario. Because of a lack of controlled and objective studies, we just plain do not know the full value or possible detriment of hydrodistension. All kinds of statistics are thrown about regarding this procedure, but we do not have the studies to back up these statistics, pro or con. Over the past few years doctors have become more and more concerned about the possible risks of hydrodistention and many have shown the accuracy of this test in diagnosis of IC is questionable, at the very best. Therefore, there has been a steady trend away from using hydrodistention as a diagnostic tool.

The simple fact is, at this time, we do not have an accurate and reliable testing procedure for IC. Research is making progress on developing such a test, but it is not available yet. This is extremely important research. If an accurate test can be developed, it will end this debate and the frustration lack of an accurate test gives to both patients and doctors. Some doctors are willing to diagnose based on symptoms and tests excluding other causes for these symptoms. Other doctors still are not comfortable diagnosing IC without some diagnostic tool. Though it, too, is not extremely accurate, the Potassium Sensitivity Test is now more frequently used to diagnose IC as it is far less invasive, has far fewer possible complications, does not require anaesthesia or a hospital setting and requires little to no recuperation period for the patient. Therefore, many doctors who still want some type of test to confirm an IC Dx turn to this test so that, though it is not extremely accurate, they at least have something to back up their diagnosis.

As patients, we all need to work with our own doctors, discuss the options with them and make our own decisions about what is best for us in our own particular situation. This is particularly difficult and critical for patients who have recently developed IC and are going through the diagnostic process. I think the most important thing we can do here is to emphasize the importance of reading and learning about IC to all of our new members. Encouraging newbies to increase their knowledge of IC will help them immensely in finding a doctor they are comfortable working with, discusing all these tests with their doctors and determining which tests are right for them.

No matter the statistics, there are unquestionably some patients like Donna who receive tremendous relief from therapeutic hydrodistentions. I don't think the debate here is about the possible therapeutic value. Rather, it is about the use of hydrodistention as a diagnostic tool. Secondary to that is whether or not the procedure is right for each us to try as a treatment tool. Along with our physicians to guide us, it is up to each of us to determine what is best for ourselves. In the end, we must be responsible for making our own decisions. In order to make an informed decision, we all need to read and learn as much as we can. If we don't agree with one doctor's philosophy, we certainly have the right and the responsibility to ourselves to seek another opinion. It is terribly important for all of us to share our experiences, pro and con, so we all can continue to learn and make better decisions for ourselves.

My background is in biology and education. As a biologist, when my symptoms suddenly developed, I naturally started reading and researching. Unlike many others, I had heard of IC. I certainly didn't know much about it, however. Therefore, I started reading and learning even before I had my first uro appointment. My urologist was very young and up-to-date in his knowledge of IC. He still recommended I have a hydrodistention for diagnosis. With all I had learned I believed a hydrodistention was not right for me and refused it. Instead, I chose to have a Potassium Sensitivity Test as both my doctor and I felt, in MY SITUATION, the test, though not extremely accurate, would have value for me. That is not to say what I chose is right for anyone else. It was simply the decision that was best for me. Since that time, like many other doctors, my uro has stopped using hydrodistention as a diagnostic tool. He does hold it in reserve, however, to try for possible therapeutic benefit for patients who do not respond to meds and other less invasive treatment procedures. Personally, I do appreciate knowing that, though I have found relief with meds, should I ever have the need, a hydrodistention is something else I could try. I like this philosophy of reserving hydrodistention as a possible treatment option if other things fail. But that is what is right for me. It might not be right for someone else.

We say it all the time. Knowledge is power. We all need as much as we can get so each of us can make our own informed decisions that are right for our own personal situation. Until the day arrives the mysteries of IC are unraveled and we no longer have to travel this difficult road, how wonderful it is we have this forum where we can share our experiences, learn from one another and support each other.

[Hanneke]

I Have had quite a few hydrodistentions not quite sure how many they started when I was young maybe 10 and I'm 33 now they have never worked (even though the doc said it will help they just have their blinkers on) and the last I had about 12 months ago has made me so bad:cussing: I asked the doctor not to do it but he insisted he needed to do it to get a correct diagnosis??:loco:

I have a syndrome called EEC syndrome and part of that is that my body does not stretch and expand like and average person for example I can't give birth throught the birth cannal because it wan't stretch that far.

I have always wondered if stretching my bladder would in my case be doing more harm, because EEC is not common most doctors just seem to brush it aside, after reading this artical I pretty sure I won't be having any more hydros.

[MakinIT]

Uh..I haven't heard of this (leave it the human body to have EVERY thing that could possibly go wrong, go wrong...) But anyway I would sure skip the stretching of the bladder!!

[Trishann]

Well I would still have a hydrodistention done because that is what told me that my bladder will not stretch and that my bladder is the size of a walnut. I did have another one to see if there were any changes, unfortunate not. Now I know what is wrong with me and I have proof that it is not all in my head, that something major is wrong and I am not going crazy. But I do believe if my bladder did stretch, I would take a chance just hoping I can get some relief. I am not doubting the pain of it at all because to me it is very painful but that is temporarily, but the stretching to some people gets the relief for long periods of time. I do believe the relief may depend on if you have a small bladder and stretching it helps you more.

Unfortunately bad things do happen and it does terrified everyone and for very good reason but I think everyone will have to make their own choice and whatever choice you decide to do, I hope the very best for you. I hope we all can continue to get better and be able to live a happy life.

Sending hugs, Trishann

[verdicries]

i know a couple people have had this happen and i'm curious...what happens if your bladder ruptures during the distention? what do they do?

i have a hydro scheduled may 2nd but i am CANCELING that b/c i just CAN'T deal with the fear and the pain (well, FEAR of the pain). i'll go on the month of antibiotics and do the potassium test.

[shelbyriva]

Not a good day to read this..ha ha , I am going in for a hydro/cysto in a couple of hours :) I have had one before and felt wonderful afterwards and got great relief, I am hoping for the same relief in a few days after the procedure like I got the last time. If this time works as well as the first I will be like the others on the list who swear by hydros to relieve symptoms. Wish me luck!!

[Trishann]

Briza I am sorry your went through so much pain. Maybe I am not reading it right but was it the hydro that done this to you or was it the anesthesia that caused your bowels to shut down and caused so much pain? You must have been so terrify.

Sending hugs, Trishann

[Briza]

i know a couple people have had this happen and i'm curious...what happens if your bladder ruptures during the distention? what do they do?


From my understanding often the dr just puts you in the hospital with a foley catheter and you just have wait for it to heal itself. I have always had suspicions that my bladder DID rupture, but was not told that it did.

Again, my apologies for scaring anyone regarding this procedure, but these things can and do happen, and I do not think that they are as rare as we are led to believe.

[HGC]

For shelbyriva - good luck today and I hope you are like me and get relief from the hyro.

[Trishann]

Briza I am so truly sorry that you were not told that your bladder rupture. You have a right to know if it did or did not. That would be awful of not being told. Again so sorry.

Sending hugs, Trishann

[Trishann]

Shelbyriva me too, I hope you will get relief too like others did. Please let us know.

Sending hugs, Trishann

[glassd18]

When I asked my uro (woman) about the hydro/cysto and the possibilities of a rupture she told me honestly that she had only one patient who ruptured, and that it was 10 years ago. I appreciated her honesty, but it didn't do much for my peace of mind.lolololo Anyhow my insurance was changing, and I was truly afraid of this procedure, even though I knew some people were helped I chose to have a regular cystoscopy. I really just wanted to rule out cancer, and from what I read I don't think you have to be distended to see it if it's there. She would not fill my bladder very full because she knows how painful IC is, and did not want to hurt me although I have to say I had such bad urethral burning at the time that it was terribly painful to have the cystoscope put in. (Ouch) She refused to do the PST as well as she felt this too was a cruel procedure. She doesn't do biopsies unless it is absolutely required because she said for IC it wouldn't change the treatment anyhow. When I had the cysto it was discovered that I had urethral polyps (an indication of bladder inflammation), and was put on long term anti's which I still think haven't really helped. Anyhow I believe it is whatever gives you peace of mind that is important. So many people have died because they are afraid of the tests. My husband's gastro doctor just told him he had a young man die of colon cancer recently because he put off the test so long. He truly believes that had he gone when the troubles first started he could have been saved instead it had spread.

[Texas Baby]

I had 3 hydros done and found that I got some relief from them. I also have had the chlorapactin treatments. the first one I had done put me into remission for several weeks. I felt relief almost immediatly . I kknew the risks going in , but when it is the only option left on the table besides having your bladder removed you do whatever it takes. Yes it seems barbaric to some, but the thinking is (and (on those that it has worked on)that it triggers the body into healing itself. Believe me I reasearched this treatment before I did it . I trust my uro 100%. In fact he ranks in the top 10 in the US and has always had my best intrest at heart, so I didn' take the decision lightly. I did it a second time but that time it failed because my bladder was just too far gone. No the Chlorapactin had nothing to do with ithat. In fact I had a Cysto afew weeks after the first treat ment and my uro commented that there was an improvement in the way my bladder looked. Had the treatment been able to work , Maybe I would still have my bladder. Who knows? Anyway , Just thought I'd weigh in about the Chloropactin.
Eva

[Sonat]

Hydrodistension was a complete nightmare for me! I would never do it again. It took more than one year to get back to the health level I had immediately before hydro.

My most severe IC-problems actually started with the hydrodistension.
I had never had pain before hydro (only urgency/frequency), now sometimes it's just unbearable....

[MakinIT]

Trishann and everyone else...My response waaaay up there was for Hanneke's benefit...With a disease in which stretching her tissues can be very harmful, i was just making the point that a hydrodistention could be a drag, and if I were her I wouldn't do it. I have undergone hydrodistention, although it was the biopsy that confirmed the diagnosis for me...I also have spent time trying, monthly, to have installations of various medications placed in my bladder. Every time it happened, I wound up having to cath myself after because I swelled so much and the spent the next week miserable. (my doc is wonderful but she wants to keep trying this technique...I've finally said no to this.

Anyway, sorry for the mix up..And I hope everyone is doing ok

[Trishann]

MakinIT, please don't feel bad because the way you feel. If you feel it was to much for you and more complication came up by doing this procedure, I can't blame you for not wanting to do it. What I was saying is only my own personal experience and what it did for me.

It is good that people is writing their own experience than each individual can decide for themselves if they want to do this procedure or not. I am not mad at no one for thinking different or expressing their view. I know sometimes I might come out strong but it is not to personal attack someone. If you felt this way please accept my apologize, that was not intention. My intention was to tell why I decided to have this procedure done.

MakinIT, I hope you have a nice day.
Sending hugs, Trishann

[MakinIT]

Thanks Trishann...and like I said, I was replying more to the person ahead of me in the strand, Hanneke? Making the observation that doing the distention procedure with her complications would be terrible. I know this procedure is great for some folks and I had to have it so they could get the tissue to finally dx me. I'm just not doing the "treatments" anymore. (I really hate it when I can't pee...L.O.L.)

[calypsogirl]

I had one hydro back in 2002 and I went into severe retention. I had a D &C/lap as well and this caused a lot of pain (this was a mistake). They loaded me up with pain meds. I was urinaing but not a whole lot for what I was taking in. Went back to the ER and they catherized (spelling) about 1200 ccs. Spent the night in the hospital. Thought the strife was over, but two days later my bladder starting bleeding quite heavily. The uro took me in right away, foley bag and no work, bed rest for a week. I told him I would never have another hydro. No comment from him, I think he geniunely felt bad, like others the two others helped.

[skowal]

I had my first hydro done two weeks ago. I went from voiding every hour or two to now every 4 hours. I also have very severe ic with a Hunner's ulcer. My whole bladder is involved and I started bleeding after only 150cc of fluid went in. My doctors have me on a very strict diet , elmiron,ditro,and neurontin. I've only had ic for a year but told it was severe at diagnosis. I wouldn't hesitate to do another hysro in the future. Hope this helps someone.

[tracyscherer]

I went in for my first visit yesterday with a Urologist, he said he was going to do a camara thing and then did the Hydrodistention thing too. It was the most painful thing I have ever gone through in my! I was never told about all this stuff here and that I should have had something for pain. He only got out 80 ? cc? I don't know but he said I have this.
In my opinion no one should ever ever ever have this done with pain meds, itis inhuman! No one should ever have this done with out knowning all the downfalls I read here.

[msjennas]

I'm so sorry that happened to you! And, I agree, it may not be IC and you should def. be put under for anything like that. I had a similar experience for my first trip to the Urologist. I think he was just inexperienced. You need to always try to see someone who specializes in IC.

I have been treated for IC for over two years and seen no results. I'm more and more convinced that it is the fibroid tumors in my uterus and leftover endometriosis that is causing my constant pain. I'm considering a hysterectomy. Does anyone have any thoughts on this?

[tracyscherer]

The whole procedure was so bad that I won't be back that is for sure. I have canceled all my appointments and will just live with this pain somehow. I thought this pain was bad, no way it is mild compared to what that was.

[Zygala87]

Wow I have not heard of someone having a HYDRO without being put out. Mine was done in the hospital and I was out big time and had no trouble after. Don't give up on a good Doctor please. They are out there. Mine told me he would never do anything to me unless I was "out" if it were to be painful. You should not live in pain. I am so very sorry for your experience. Big Hug, Ziggy

[tracyscherer]

thanks everyone again,

Yep, I should have been put out. I had to do breathing like when in labor, my body was shaking uncontrolably and I think I was going into shock.
I was screaming for Tim, my boyfriend and no one would go get him, he said that he heard me, but didnot know if he could go in.

I want others to know that come across this site, that if you are schduled for this, ASK about being put out!

[tracyscherer]

I'm so sorry that happened to you! And, I agree, it may not be IC and you should def. be put under for anything like that. I had a similar experience for my first trip to the Urologist. I think he was just inexperienced. You need to always try to see someone who specializes in IC.

I have been treated for IC for over two years and seen no results. I'm more and more convinced that it is the fibroid tumors in my uterus and leftover endometriosis that is causing my constant pain. I'm considering a hysterectomy. Does anyone have any thoughts on this?

My very first appointment with my Pimary care I said, Please just give me a hysterectomy, "cut me open, cut it all out and set me free", I think were my exact words. LOL

I would love to have one! I would love to at this point do anything to help myself get out of daily pain. well maybe one day a week I will not have pain.
It really sucks.

[krisillis]

I'm terribly sorry to hear that some of you have had horrible experiences with hydros' or Drs. For those new to this don't give up. Do some research and make your own decision (which I'm sure you will). I have a great Dr. He's considered the best in his field in my province. I did experience some severe discomfort on my last hydro (i've had 2) But the nurses were great and he was good to me. I've found that Belladonna and Opium suppositories work best for me for pain control. The delivery sucks though. My hydros have bought me 6 months relief and I am considering a third. He was kind enough to inform me of all the risks. ** Giant hugs ** to everyone. Sorry you had such a crappy time.

Christine

[broken_smile]

I had a hydro without anesthsia and I am here to tell you the pain was hell. It made me not want to have it ever again but I did have it one more time with a great urologist and he put me under. The hydro gave me no relieve so I have vowed to never do it again. I am glad it works for some as we are all different. I would say try it first but if you get no relieve I would not contiune to do it because why put your body at risk to get no relieve.

Broken_Smile

[tracyscherer]

Hi everyone,
What happens to the fallen bladder with doing the Hydro's? Fall more?

[veeneck]

Hi all,

I, for one, had a great response to hydrodistention the first time. The second one included surgical treatment of multiple ulcers. I felt better for about a month afterwards, but since then I have been much, much worse than ever before. I am now in constant, unrelenting pain, where before I had remissions and flareups. It has been a real nightmare, and it seems to be getting worse day by day. I now cannot fall sleep without Ambien, and the minute it wears off the pain hits me and prevents me from going back to sleep. A walk on the beach, or even around the block, is impossible.

I think that the hydrodistention was responsible for me feeling better for a month, but for some reason the ulcerations were worsened rather than improved by the surgery. I had extensive bleeding for weeks after the procedure. I now have no bleeding, but the pain is overwhelming. I am just hoping that things will eventually calm down. It's really hard to imagine continuing to live like this.

If I had a mild to moderate version of IC without ulcerations I would probably go right for the hydrodistention.

Victoria

[leeshel]

Hi All,
I don't know what I would have done over the last 11 yrs without hydros. I have had one every yr and once I waited 2 yrs. The first one took a while to give relief because they took a biopsy to rule out cancer and that one really hurt. Also my bladder was adhesed down but it did not rupture.When I went to my uro and kept talking she said since I had a history of adhesions maybe I needed to be evaluated and I had to have laproscopic surgery. The surgeon released my bladder and removed a bunch of adhesions from previous surgeries and my bladder was in good shape for a while. I knew when it was time for another hydro.

After that hydros have been a breeze for me! I am in and out of the hospital within 5 hrs --if they will hurry and get me out of recovery. I guess I am one of the lucky ones as I wake up quick, don't get sick and can pee anytime and anywhere. Well one time I lied to the nurse to get to leave and told her I peed and flushed it already. I cath myself and do treatments at home so all I had to do was cath at home if I could not pee. My husband jumped me on that one but it all came out at home. I want to get out of the hospital, take my meds, get in my recliner and on my heating pad.

After that first hydro, I now can have one on friday and be back to work on monday. I do not have a physical job though.

My dr told me that for "THOSE IT HELPS". Each one seems to help more and more. That has been my experience. We all know it doesn't work for everyone.

We know from these posts that just as with IC, NO ONE thing helps us all. Wish it did. Wish ONE treatment could CURE us all and we could go on with our lives and not have to even think about things about distented bladders ect. but we have to and just wanted to put my experience in the forum.
Take care
leeshel

[snowgirl]

Thanks for your post. I was diagnosed in 1984 with cysto- hyro- silver nitrate
I then went to hydro's every 2 years then they became every 1 year same treatment. My capacity went in 550cc down to barely 100-150. My uro then passed me off to his partner who had just returned from time away at U of Texas I believe. The uro is world renowned in femal urology and published several books and invented many surgical techniques including some type bladder sling. I started with him in 2000 and do hydro;s every six month every May and every November with DMSO. He is able to get my capacity to 175-200cc and no more. I will be booking my May surgery her this week. It was these hydros every 6 months that kept me working M- Friday ten hours fourty hours a week as a Recovery Room RN. I would have never made 20 years without them. He said to me this summer I don't know how you ever did it for 20 years this was how and I loved my job- it was my career , my passion. And finally after 20 years I asked my family MD for a pain consult and I entered into pain clinic managment in May by the same anesthesiologist I worked with every day. And for the first time in 20 years and especially this last 2 years I don't have anymore pain. Occassional flare but the pain went from a screaming 10 in bed all day with FMLA day to a 1 maybe 2 on the pain scale now.

For me I would have never worked so long without the hydros as my capacity is so little and my bladder so scarred.

Vicky

[snowgirl]

I have to agree with Donna 100% - I can't imagine how my life would be without hydros.

Amen

[ad8123]

I have sever IC, and my Ic is helped greatly by distentions I also have diminshed bladder capacity in the last year and half I have lost 50% of my capacity. what I am most suprised about is that I am half way through this thread and it is so negative that I am going to log out after writting this response. This procedure has been continually helpful for me since my diagnoses about 6 year ago and I have had at least one a year. My intent is to continue to have at least one a year as long as the offer any realief as there are so few reliable options out there for ic. What I really want to say though is that I am sure many of us in pain when we come here I now I am and maybe you are coming here looking for some good news or a common bond but really we need to stop trashing eachothers choices many of these responses are so neagative and some are out right attacks on peoples choices for there treatments options the truth is IC can be brutal for some of us it will be the worst pain possible, that you can experince and still live so whatever treatment option someone chooses if it works for them, then who are we to judge,so back off and think about your harsh comments show some compasion it might very well be you on the other side in a few year or a few months. IC is the enemy that has no boundries and will never stop.

[Trishann]

Angela I am so sorry you feel this way about the thread. I thought it was a learning experience and a well educational one. Learning different experience from different people, so individual can make their own choices. I don't think this thread was intend to down no one hun but to learn. Oh I hope it didn't make you want to stay away because truly we need each other.

Sending hugs, Trish

[ad8123]

I am all for learning about everyones responses to treatments I think we should be careful with our choices of words that we are not isulting or criticizing the person just the treatment, always just the treatment. My concern is just that as I came here in desperate pain so do others and some newly diagnosed will feel overwhelmed and in dispair and may feel that there is little hope if too much of what they see is us calling eachother names. Thankyou though I am sure most of us ment just to express our feelings for or against the treatment and not against our follow IC'ers (at least that is my hope).