Urologist told me Interstim or Bladder Removal...I have questions please...

[ICLori]

Hi, everybody, I'm trying to decide between interstim and bladder removal.

Right now I am learning everything I can about interstim. I have gone to the interstim (medtronics) website to ask questions, and am awaiting some answers.

I would like to talk about what impressions I am getting so far, reading the posts, and ask if you all could tell me if I'm on target or missing the mark in my impressions from what you can see or what your experience has been.

So far I think what I am hearing is, this is good for urgency/frequency but not pain, but does lessen the urgency pain (and that's how you get to have less frequent voids.)

I am hearing that it is a major, major operation with at least two parts, and often more because of replacing lead wires, adding new wires, reprogramming, etc. I am hearing there is a signficant risk of nerve damage, possible risk of infection, etc.

I am hearing that it's pretty easy to break the lead wires or mess up the device if you exercise very much (no sit-ups, no weight lifting, no jogging?) (can you still sleep on your back though? Or sit in chairs comfortably?)

The biggest concern I have is that I seem to be hearing, over and over, that this device fails after 1 or 2 or 3 years. That it works for awhile (64% completely better or at least 50% better) and then you reprogram it, add more wires, stand on your head and jump through hoops :lmao: but the thing just stops working. My impression is that it stops working at that time for ALL patients. (Has anyone ever had theirs work beyond 3 years?)

The data at medtronics site doesn't help me with this because they only followed their patients 17 months. So there is no way for me to know what happened to those patients at 18 months, 24 months, 36 months etc.

Please, if anyone could give me any feedback, steer me in the right direction if I am veering off path, I would appreciate it.

Thank you,

Blessings, Lori

[tigger_gal]

lori,
you can send me a list of your questions or post them I will be glad to help you.. I might give the stage trail interstim a try b4 bladder removal.. but remember its not for pain... brat_in_mich@hotmail.com
I can run.. sometimes lol I have fibro so mostly not, you can resume you normal activities after your implant.. about 6 weeks.. I have fell on my rump and was fine, never had any major problems with my interstim. I sleep on my back and sit just fine, not to mention drive :)
Brat

[Katrina]

If I can help you with this discision in any way let me know. I have had my colon removed and have a nerve inplant for epilepsy in.....neither are exactly what you are looking into but they are similar so let me know if you want to ask me any questions. I pray that you are able to choose what is best for you.
:grouphug:
God Bless:kiss::kiss::kiss:

[rjyoon]

Before I consented to the Interstim I spoke with a patient who'd had hers for over 10 years (she was a part of the trial that got it FDA approved). She'd had to have the lead wires replaced when they finally fatigued, and the stimulator replaced when the battery ran out. I'd call that normal maintenance for a medical device over that period of time. It's too soon to say how long mine will last, but I think there are some that do quite a bit better than what you've heard.

[ICLori]

Thank you all so much for your replies, this helps me so much in making my decision and I appreciate you taking the time to help me.

This is kind of a scary procedure to go into, there are real risks, and so I am trying to learn everything I can before I consent to it, so that I can be prepared for possible complications and also just knowing what I might expect in general.

Blessings, Lori

[ICLori]

P.S. Part of what makes the idea of interstim appealing to me (IF it works and keeps working, which is naturally a very big "if") is that I think maybe if my urgency/frequency were under control, I might not need pain meds.

It's very hard for me to separate urgency/frequency from pain. It's hard for me to say exactly which part of the whole trio is causing me the most misery and affecting my life so badly. So I'm thinking, it is possible that if I just get urgency/frequency under control, that might be enough so that I could go off pain meds entirely, I don't know. It would be nice if I could do that.

And Interstim is usually more easily reversible than bladder removal is, at least. Although if I get nerve damage or injuries during the implant or so forth, that's not reversible as far as I know. But I don't really know what the odds are of that happening. I feel like there isn't a really big data base for me to look at. There's the medtronics site, but I can't help but wonder if since they make the device, they put a positive spin on things. And then there is the anecdotal evidence I hear on this site, which is very helpful to me but even with all of that I don't feel I have a good handle on exactly what percentage of patients have which complications and what percentage of patients have good relief (at least 50% better) for longer than a couple of years.

Whew, this one is a tough decision. I was thinking if it were cancer, it would almost be an easier decision, because I'd just say "yup remove my bladder, that's a no-brainer" but this decision isn't like that. I wonder if, after I make a decision, I will end up kicking myself down the road for it.

Blessings, Lori

[ICNDonna]

One thing that's always okay is to see another urologist for a second opinion before making your decision. Since you're having concerns, I actually think that might be a very good idea. There may be some treatments out there that you haven't tried yet.

Sending warm hugs,
Donna

[ICLori]

Thank you so much, Donna. I am going to see a urogyn on 16 August, and I am working with the pain management team and we are exploring TENS, Neurontin (just tried that one and got horrible bladder pain so that is out), percutaneous nerve stimulation, VIOXX, and I don't know if the docs will go for this one but I got a phone number for a compounding pharmacy so if the docs say "yes" I can pay out of pocket and try some of these meds (Elavil for instance) without fillers/dyes and see if it was the medicine itself causing me more pain or the fillers/dyes.

So I am really trying hard to think of anything that helps. I am taking the algonot 5 in one in the hopes that it will help. I got one bottle, and they will be sending me the two more bottles I ordered when the factory problem is over with/supply problem. They said they could only send one bottle for now and would have to send me the two other bottles when they could. I hope it's soon because I think in another couple of weeks I will have used up this first bottle. In fact I think I will contact them and try to see what is going on with that.

Also I am going to ask my doctors about alpha blockers, lumbar sympathetic blocks, etc. in the hopes that there is some relief for me somehow.

Blessings, Lori

[ICLori]

One question I do have, though is...if I am getting good results from staying on pain meds, without too many side effects, wouldn't it make sense to just stay on the pain meds and not do this surgery? Because there is surely a chance that even with a successful interstim, I might still need the pain meds.

Percocet already decreases my frequency to half or less of what it was without pain meds, and increases my capacity by double or a little more. So Percocet is doing for me what Interstim does for other people, when the Interstim is a success.

Since I'm doing well on pain meds, would it make sense really to take a chance at this time on the Interstim? It seems like there would be less risks with the pain medications, which are fairly safe medicines actually I am learning.

What do you guys all think? If I am doing well on pain meds, does it make sense to take a chance on Interstim?

Blessings, Lori

[Katrina]

My VNS implant did cause odd side affects and put me through some pain that slowly got all better after it was turned off. Other doctors believe different programming could have prevented those problems. I suspect that if Instirm works for you ...you would like it more than meds everyday.....and the way to make sure things go well is to have the best doctor available for you. Meds on the other hand work pretty much the same no matter who prescibes them....I know the best doc that exsists isn't usually available/affordable for me. One other problem an implant causes is that when it causes problems ER has little ability to help you....if you can't get a hold of your doc you are stuck....but if you plan ahead that is a lot less of a problem.

I know that my inplant for my epilepsy brought me off of one med and lowered doses of one other.....Which improved energy. Side affects of meds like tiredness we get so used to ....but when there gone...yippee!

I don't know if that helps you at all but it is how I look at things now when I decide weather to turn my inplant back on and start over with my better doc.....wait for later, or continue on my high dose multi meds.

If I can help you with this anymore let me know.

:grouphug::grouphug::grouphug:

[Pain]

Please be sure to as Donna said, get a second opinion and do a lot of research from reliable sources first. If pain is your primary complaint, interstim is likely not the answer. If successful, it is mainly to control frequency/urgency...ie: the urge to go. In my case, my pain is 24/7 severe regardless of any other symptoms so in my own case, not an option. I've not heard of too many who have had total PAIN relief with interstim. Please be your own best advocate and do plenty of research and seek second opinions, etc.

[Teri]

If you are doing well on pain meds, STICK TO IT :)
Do you have good bladder capacity Lori? I have a friend who has only 2oz capacity and it did not work for her, she had her's removed (as did I).

Even tho I am not a huge fan of the device, I would definately try it before having my bladder removed. There have been some studies done as to the sucess rate of the device but I don't think that the dr's are using ALL of their patients in these studies. It's like anything else, they tell you what they want you to hear.

I had huge sucess with my original one for a few months, had to have a revision, went thru 2 years of hell and had it romoved. I have decided that since I do have good bladder capacity I will live with the disease. I've had IC since I was a child so for me, peeing every 20 minutes has become a habit I've lived with for 53 years and I will keep on livin' with it~

[ICLori]

Hi, everybody, I think I might end up trying the Interstim because pain meds apparently do not work for me. Percocet irritated the heck out of my bladder - I had less pain when I went off than when I was on them - and I have that problem with nearly every med, whether prescription or OTC, I take. It's awful not to be able to take even pain meds without the pain actually getting worse instead of better. So I am off pain meds now and do not intend to ever go back on them, unless my bladder is removed, as pain meds cause me to flare terribly.

So, for me...I'm going to try a TENS unit, then percutaneous nerve stimulation (non-invasive) and then if those don't work, probably Interstim, then if that doesn't work, bladder removal. Looks like the way I will have to go....thanks for replies everybody...

Blessings, Lori

[janetm]

Lori,
Here are a couple of things to consider.
1) Acetominephen(spell?) seems to make me pee more. Percocet has oxycodone and acete.. Do you know how acete... affects you? Would your doctor prescribe just oxycodone? This is what I take.
2) I have learned that I have a pudendal nerve problem that feels like IC and it seemed like IC was worse but maybe it was the PN. Nerve pain responds better to things like neurontin or tegretol.
3)I was told that if you have questions about what the implant is for, you should ask your doctor for the name and phone of his device sales rep and call the rep and ask them about how the device affects pain, etc...

It sounds like you are pretty desperate for relief. I hope you find it.

[ICNDonna]

Another thing to think about. Even the company will tell you that the interstim is not for pain. And some who post here regularly and feel they are successful interstim patients report that they still need pain medications.

I urge you to talk to lots of people before consenting to have this surgery.

Donna

[ICLori]

Hi, Janet, my doctor told me it's impossible for the Tylenol to be affecting my bladder because it's processed by the liver and not the kidneys. You know, docs know everything and if we patients feel something they don't expect then we are either crazy or lying.

I tried Neurontin, it made my bladder pain much, much worse, it was awful.

If I can just get rid of the urgency/frequency/constant feeling of having to pee even ten seconds after I finish, I figure that will be enough that I can live with the rest of it.

The only other option at this point (besides Interstim) is bladder removal. I am going today to my appointment to try a TENS unit - hoping it will work. But basically if that or PNS don't work, it's down to Interstim and bladder removal because I've tried all the drugs and all of them make my bladder pain worse because my bladder is hypersensitive to meds.

Between those two choices - Interstim and bladder removal - I think Interstim is a bit less risky, more easily reversible, etc.

Guys, I don't like these choices either. I do wish there was some medicine I could take, some easier way out, some DMSO that would work, etc. But I have tried them ALL and nothing works for me, all meds make my bladder pain WORSE.

So here I am, left with these choices that I do not like. It doesn't matter how many horror stories I hear, either about bladder removal or Interstim, I am still left with only those two options after trying and failing everything else. I can not live with this disease, it is 24/7 for me with no relief. So just "living with it" is not an option either.

Interstim and then bladder removal, in that order. If the Interstim does not work, bladder removal is next.

Blessings, Lori

[janetm]

Lori,
I hope you don't think you have to answer to me. You know your own body. I was just trying come up with some extra ideas for you. Surgery is a big step.
The order you are planning to do these in makes sense. Did you see the thread about bladder removal? A user named Judith said she had her bladder removed and is willing to answer questions about it. If you do get to that point, I believe there a choices to make about how it is done.

Good luck to you and please keep us posted,

[ICLori]

Hi, Janet, thanks for replying - I have read Judith's story and many of her posts and she said she'd be happy to answer any questions I have. Mostly I am just hoping that Interstim or something will work so I won't have to go to bladder removal. I am just so tired of this IC stuff.

Went for a TENS unit today. Got to the physical therapy, they said "wrong place, your doc should have sent you to the gynecological physical therapy as we only do muscle aches/back problems." So I have been waiting weeks to get seen for a TENS unit, and now must make an appointment at another place and wait weeks again.
I was really hoping to try the TENS unit because I'm now in month 3 or 4 of this flare with no end in sight and I wanted some relief.

Blessings, Lori

[Katrina]

:grouphug::grouphug::grouphug:
I hope this works out for you. Good luck Lori!!!!!!!!!!!!!!!!! I so hope this helps you as much as you need it to! Love and Blessings to You!

:grouphug::grouphug:

[aquafina]

Lori- I was at the end of my rope too when I had the interstim done and it gave me my life back. You know though you have to go to a doctor that really knows what he is doing, my DR a uro/gyn has done over 120 of them and has great success plus if it doesn't work then you take it out and are not physically worse. I was going to tell you a few things that worked for me because I did not respond to any DMSO or medication they gave me it made me worse, I was so desperate. But I decided to try Freeze-dried Aloe vera from Desert harvest and it cut my symptoms from 60 times a day to 30 or so, I know that that is not enough to have a life but it made my life stuck at home little less miserable, I also follow a very strict diet and only eat organic food because there is so much stuff it regular food, especially all the stuff they add before they kill the animals or harvest anything. I also am picky about my water oil and salt and I can tell you upon my life I know that it what made my urgency and my frequency better and that working together with Interstim on 90% of days I only pee about 12-17 times a day. That was great for me. I know that everyone is different and taht you are tired of having to be self-diciplined but I want to tell everyone who I can that what I do might help them. If you have any questions please IM me. I will be praying for you. I am so sorry.

brooke

[ICLori]

Thank you so much Brooke!

I am trying so hard not to ingest anything that irritates my bladder....using Prelief and TUMS just to de-acidify my urine as I drink lots of water....

I just feel frustrated because all the docs I talk to about this, think I'm crazy or lying when I try to tell them that so many medicines (nearly all of them) make my bladder pain worse.

I know that I'm not lying or crazy. I have never had an imaginary pain or illness in my life. When something is wrong, I feel it. I wish there were some scientific study to show doctors that, yes, IC patients sometimes are hypersensitive to medications and they can make the bladder pain worse.

Well, I'm going to do the TENS unit, the percutaneous nerve stimulation therapy, and then if those don't work I will look at Interstim and then if that doesn't work I guess the next step is bladder removal. I keep trying to figure out how I can just live with this, and I can't figure out a way. I mean, if only I could get a good night's sleep, maybe I could cope with the pain/frequency/urgency during the day and still have something like a life. And I'm really not sure if the pain is pain/pain or if it's frequency/urgency pain - I know that doesn't make any sense, but it seems like I get relief when my bladder is completely empty but if there is even a few drops in, I get the pain again. So if the Interstim blocks that pain you get from a few drops filling the bladder....I should have good relief I think. Anyway I think it is worth trying. I know that it could go terribly wrong and I could end up in worse pain, but I just can't live like this any longer and I have to try something. I have to just cross my fingers and hope for the best. Oh I hope a better treatment, a cure, is coming soon for all of us.

I am going to the urogyn on Monday, the 16th of August, for my initial consult. I guess he is the one that does these interstims. So I will see what he thinks then. Of course I want to try the TENS and percutaneous stuff first. The hypogastric block...sheesh from what I have been hearing/reading/been told it scares me worse than Interstim. They generally only use that on patients dying of cancer and there is a 2% chance each time I have it done (have to have it done every six months) that I will lose control over my bladder and bowels and be stuck in a diaper forever or that I will die on the table because they will hit an artery. So I am looking at that and thinking...hmmmm...think I would rather do the Interstim....

There are a couple other things I want to check out. I want to ask (yet again) if I can get some stuff to instill in my bladder to numb it, to handle the symptoms that way. I want to ask about Botox again. I want to ask if I can be tested for Sjogrens (I do have dry eyes) to see if it's that, and then immunosupressive drugs would help in that case.

It's just that I have been living with this for four years, and it's been getting worse and worse until it's a 24/7 thing. I am not as bad as you were, only about 30-40 times per day so maybe I should consider myself very lucky but even at this rate it's hard to live a good life, and my bladder feels uncomfortable most of the time between those voids too. Often I only get seconds or minutes of relief after each void, then the discomfort starts again. I just get tired of my bladder always wanting to be the center of attention.

Thank you again for your post, I'm feeling sort of blue these days so I think my posts are probably a bit too terse or something, I always come across badly when I'm down.

Blessings, Lori

[ICLori]

Thank you so much Katrina! :) You are such a sweetie! You are surely one of the truest angels here on the IC Network.

Blessings, Lori

[aquafina]

Lori- I am also very hypersensitive to medications and for a long time I had no relief in my symptoms and I kept getting worse and I at the end of my rope. It is ok Lori, don't appoligize for being concerned. I wonder though if you have tried the organic food and you know tums and prelief don't help me. I wouldn't mind sending you my diet if you want, I just need your email, by following it it takes away the pain and most of the frequency and a lot of the urgency. But there is just so much added to regular food also have you tried the aloe vera it has no side effects and won't interfere with medications. I know you are tired of trying things but by doing these things you cannot get worse and it is not a permanent decision. Also with interstim what I like about it is that if a cure or something comes out I can take the implant out like it never happened. Please feel free to email me with any questions.

brooke (brookebrowning320@hotmail.com)

[ICLori]

Hi, sweetie, I'm willing to try anything....right now I am trying Algonot 5-1 which I think is supposed to have aloe vera in it....

Went to my pain management appointment today. I know the time and date were right on the mark because I took the info over the phone and wrote it down - 14 August 0730 - well it's a Saturday so the clinic is closed of course. They will probably say "oh no we didn't tell you that time..." I think they think I am a problem patient because I keep reporting adverse reactions (bladder pain) to meds and I think they think I am lying.

Blessings, Lori

[Peggy Anne]

has anyone tried the interstim that ONLY has frequency and urgency? and if so, has it helped? did it cause more pain? and more importantly - why is the surgery so hard to recover from?? Thanks!!

[MegFezziwig]

Lori, I am new to this group and am not exactly sure how I am supoosed to do this or if this message will even show up. I cannot find a message from you dated any later than August 17, 2004 and I am writing this message on August 27, 2004. I want you to know that I too, am super sensitive to any and all drugs and all the pain meds I have tried have made my bladder symptoms worse. The urgency/freqency and pain always get worse and I simply will not take that crap anymore. I too have been asked by my pain management specilist to try Interstim or a procedure called Spinal Cord Stimulation. I have only started my research and I think they are too risky but certainly better than having your bladder removed. I have had IC all my life but was not properly diagnosed until I was 35. I am 47 now. I am going to think very long and hard before I let anyone put those implants into me. I know of one lady in my other support group who has had Interstim and had very bad experiences with it. Did your doctor mention Spinal Cord Stimulation? That sounds horrible to me but I don't know what we are supposed to do if we can't take pain meds. Anyway, I hope you find some relief and I will be thinking positive thoughts for you and for all of us with this dreadful disease. Thanks, Meg

[ICLori]

Hi, Meg, I'm sorry you have had the bad experience too of medications bothering your bladder. Have you had problems with doctors not believing you? Today was the first time I ever had a doctor (my new urogyn who seems very professional and nice) tell me that he's heard of this before and understands that some IC patients do have problems like this and it's not in our heads and we are not liars. (The other docs basically told me I was lying.)

I am currently in a semi-remission perhaps because of hydrodistention/cystoscopy I had a month ago (first I didn't get a remission because I got a UTI but now that the UTI is cleared up my bladder is feeling so much better, and is well enough that I can't do Interstim or anything because it's not bad enough to note improvement...).

So anyway we are doing nothing until my symptoms return. But he is very enthusiastic about this Interstim, says that he's had great results for his patients who were just like me including many who could not tolerate meds.

I too have heard horror stories and am afraid but I am slightly less afraid of Interstim than I am of bladder removal so I guess Interstim it is. I know that when I am flaring (and my flares last many months, not just weeks or days) life is just impossible. I go from 30-60 times per day and go all night long, spend all my life on the toilet when I'm symptomatic, and have pain as my bladder fills (even a few drops hurt bad). That's no way to live, especially when meds end up hurting instead of helping, and there is nothing I can do.

So...what is a person to do when faced with either bladder removal or Interstim? Interstim seems somewhat more reversible at least than bladder removal....both scare me to be honest. I wish so much there would be a magic pill I could take to make it go away. I am so envious of those who are helped by medications, are you, too? Do you find yourself a bit wistful when reading that meds help most IC patients, too?

I heard once that success or failure with Interstim can sometimes depend on the abilities and experience of the surgeon involved. I know that is true of most surgeries - the best results are by the best surgeons. Perhaps it is true of Interstim too. I would be having my Interstim done by one of the leading surgeons for this in the country, so at least that would be in my favor.

I did meet with the doctor today and asked if I could also look into two experimental therapies when my symptoms come back - cyclosporin and BCG. Basically I want to try everything and anything before I commit to surgery.

But if it's a choice between surgery and living my life peeing 40 or more times a day...I guess I will choose the surgery even though it's a big risk.

I don't know how long this remission will last but I sure am enjoying it for now.

Do you get remissions sometimes?

Thank you for this post.

Blessings, Lori

[MegFezziwig]

Hi Lori. I am so glad to hear you are presently in a remission. When I have a hydrodistention done I only get worse but I did not realize this for many years and I have had plenty of those awaful things. No, I never have remissions but I do have days which are not as painful as others. I try very conservative methods since pain pills don't do the trick. I watch my diet very carefully (how very dull!) and I live in the bathtub with very hot baths followed by very cold compresses applied directly to the bladder and pelvic area. I also do biofeedback and have learned some great relaxation techniques. I guess I have lived with this so long that I am used to it. Yes, it is not a pleasant way to live and I am always peeing but I still am very reluctant to try Interstim. You sound like you have done a lot of research on it though, and I am only beginning my research into it. What is your bladder capacity? Who told you that you might need to have your bladder removed? I am still able to urinate most of the time but I do have retention and a lot of pain. I have heard that of the people who do have their bladders removed, taht some of them still experience pain. what a bummer. Still, you are in remission now so you are able to think more clearly probably and you can decide what is best for you. I sure hope whatever you decide helps you. Heck, I hope your remission never ends so that you don't have to do any drastic procedures! Did you ever try biofeedback? That is probably the best thing I have ever done for my poor old messed up bladder! Thanks for replying and stay pain free! Meg

[ICLori]

Hi, Meg, my capacity is now about 450cc under anesthesia and when I am flaring that translates into 1/4 cup or less per void. Right now I have good capacity, closer to a cup I would bet, because I am in remission.

My uro told me the only options available to me now are Interstim or bladder removal because every other pill and therapy I've tried over the past 4 years has not worked.

You know doctors I talk with are wildly enthusiastic about the Interstim, this one doc I am going to now says it helps almost all his patients, they do great on it. But so many IC'ers say it's awful, they've heard awful things about it, etc. Hard to know what to think.

I do know that I don't want to spend the rest of my life in an IC flare. One thing I know for sure is that the symptoms will come back - my remissions never last very long.

I haven't tried biofeedback but I have an appointment with a physical therapist to try different things including TENS so maybe I will learn something there....

It just seems to me that we ought to have more effective remedies than hot and cold for this condition - I sure hope research leads the way soon to a much more effective treatment for all of us. I'm sorry the hydrodistentions made you worse - how awful! I wish there was some treatment that could take these symptoms away from you.

I hope that you will have less and less pain each day. My urologist told me that in his opinion, people get better as they get older, with this disease - in some it goes away completely he said. I don't know whether to believe it or not...

Blessings, Lori

[MegFezziwig]

Hi Lori, It just scares me when a doctor says Interstim and bladder removal are your only options. My capacity is usually below 200 CC and as I have gotten older my IC has not improved and certainly not gone away. I have head that it does for some people. Have you read the book, "To Wake In Tears"? It is quite good about IC about a woman who got over it by using non invasive therapies. I use some of her ideas and it helps a bit. I also do pelvic floor exercises which are great and which you will probably learn in physical therapy. I just shutter to think about taking out a bladder which is still able to urinate, if only a little. I am not trying to talk you out of Interstim. Heck, I might have to go that route someday myself but it is not likely. I just am on Information OverLoad at this point and it is darn confusing! By the way, I have never had a doc call me a liar cause I said that meds seem to make my condition worse. They have called me odd, though...LOL....I sure do present a challenge to them. How old are you, Lori?

[ICLori]

Hi, Meg, yeah I'm scared too. My first uro told me to "live with it" four years ago and that's when I got that book you talk about and read it from cover to cover. Went the "natural" route and spent thousands (or at least one thousand) dollars on a bunch of "natural" therapies that didn't do anything for me but drain my pocketbook.

Yeah, they were non-invasive...but didn't work. Also, I'm not showing any signs of having pelvic floor dysfunction - just a very inflammed, horrible bladder that is one of the worst my urologist has ever seen in his career - so not sure that will help either, the physical therapy. I am hoping the TENS unit will help and interfere with pain signals.

You know it's funny - everyone here reacts in horror when I talk about bladder removal. I am on an ostomy support group where there are a bunch of IC'ers who decided to get their bladders removed to have their lives back - and they are really singing the praises of having bladder removal done. Not one of them would go back to living with IC - they say having the bladder removed gave them their lives back. I am encouraged by that.

I'm 43.....

Only 200cc...how many times a day/night do you void, are you able to work or have a regular life? If not, maybe Interstim would be worth trying....

Blessings, Lori

[MegFezziwig]

Happy Saturday, Lori,

Man, it does sound like you have tried everything. I have not tried all the natural remedies myself, I do some self help stuff and meditate a lot, do distraction stuff, visualization techniques, etc. I am not afraid of having my bladder removed; indeed, the thought of having a bag does not bother me in the least. I am used to the gross stuff of diapers and pee and all the rest as I also have terrible incontinence. What I am worried about is that the pain does not always go away when the bladder is removed. I even heard of someone who then had the symptoms move to her liver once the bladder was removed. I don't have the specifics on that case, I just recently read it on one of the message boards I somewhere. I just have my own beliefs that this disease is much broader than the bladder and the bladder is the end organ where the symptoms appear, so in my mind, removing the bladder is only a temporary fix. I would love to not have the urgency and pressure stuff so removing the bladder would take care of that, huh?!!! There is no easy answer to any of this. I might have to do the same thing someday. I am not going to do any implants at this time as I don't know enough about it yet but I am gonna keep on reading. This house is full of IC literarture, boxes and boxes of the stuff!! I am on disability but one of my policies terminated me one year ago and I am still fighting to get that back. What a drag. I still have my Social Security Disabilty and state disability though so I am more fortunate than many, I guess. I void many times during the day and night but it varies and sometimes it is not too bad. I actually handle all of this better than I used to when I was younger. Still, the thought of living like this the rest of my life is overwhelming so I have to plot my course, I guess, and educate myself as much as possible. Hey Lori, do you have pictures of your bladder? I have three, from different hydrodistentions through the years. I had one uro say it was "mild" while my other docs all say it is a very "severe" case of IC. I would like to compare my bladder pics to others who have this disease in a very bad way. Do you know of anyone who could scan their bladder photos to share? LOL, what a weird request, huh? Or, I could send mine and someone could give me an opinion? I am getting pretty desperate here. Thanks again, Lori, for writing back as you still the only person I have found who is as medicine sensitive as I am. Have a good day!!! :-)

[Pain]

LOL..and I am NOT recommending this but I use my TENS to literally "divert" my pain to a new area. I crank it up and have it on somewhere else on my body all together until it "hurts" and then at least I feel a DIFFERENT pain for that time frame. Heck when I get a severe 3-day hormone migraine...a small sick part of me is "happy" because another pain is trying to compete/distract from my normal severe bladder pain. NOT the prescribed use of a TENS unit but thought I'd share my own use of it on the rare occasions I break it out. Other than that it does absolutely NOTHING for my bladder related pain. That is why it is hard to go to pain support groups that are primarily skeletal/muscle pain as that type of pain is often able to get relief via various stimulations...heat, cold, massage, TENS, movement, therapy, etc. Visceral pain is so much different and well you can't "reach" it. I have found very strange odd things to try and do to get some relief that if people looked in my window and saw what I was doing would probably have me committed. In the end...nothing does it really. Sucks to have this 24/7 pain for sure!

[MegFezziwig]

Pain, Hi, wow, I was thinking of getting a TENS but it really doesn't help your bladder pain? Hey, you are not so different than I am. 4 years ago when I had a hysterectomy, I was thrilled to have the pain of that surgery to take my mind of my bladder pain. I almost laughed at how easy that pain was compared to bladder spasms and pain. I didn't even take anything except for Advil to deal with the surgery pain. A couple months ago I had a huge boil (I know, I am really falling apart) and it was so gross and very painful but again, I welcomed it as it was so much easier to deal with than this crummy bladder pain. It sort of put things into perspective for me. It made me realize that IC is simply one of the most painful things one can have. I wish people could be more undestanding of us. I know some are but dang, this is such a complicated condition. Thanks for your input, Meg

[Pain]

Yeah..I got several boils all at once that got HUGE. Turns out I had MRSA infection which of course can be deadly if it gets in your bloodstream. The lingering effects may be HS - another very rare disease but NONE OF THAT PAIN compares to the 24/7 bladder pain. There are days I want to take a hammer to my toe I swear...just for a change of pain signals. I DO have a broken little toe that dislocates when I re-stub it, hurts like hell but I celebrate the mini diversion.

I had the lap exploratory surgery and "loved" the pain from that too for a few days BUT not the urethra pain. Even though I requested and they used the smallest catheter available (small child)..I still ended up having severe bleeding from my BLADDER after that short surgery due to the catheter. My urethra is so shot that it is virtually unable to be cath'd. Which of course prevents the invasive treatments..as so many docs found out. It is literally "shredded" insides. bleeds often and is solid hard scar tissue due to a "lovely" surgery I had on my bladder trigone and urethra back in the 70's. They have to use a small child catheter on me and often times it takes 2 people and a lot of drugs to even attempt it. Only agree to that now when a clean catch urine sample is absolutely necessary or when I am knocked out. But it is so damaged that even then...I suffer badly from it. To be honest, the catheter situation is what is stopping me from having a hysterectomy to remove the NINE LARGE fibroids I have, the as they called them "worthless dried up ovaries that look diseased" and deal with the endo that has likely built up again. I hate when folks refer to this pain as pelvic pain. Again...does not compare at all. I have the huge fibroids, endo, etc. and all of the pain from that doesn't compare to the unrelenting bladder pain. It is like no other.