New and Mental Does this ever end?

[callie12]

OMG, Here I am on yet another forum, trying to learn, trying to help myself.
I can't take much more of this. I have for months been dealing with 3 prolapses
( grade 2) I am in just horrible pain, cried my to sleep last night from the pain.

I saw a Standford doctor last week and he doesn't think my prolapses are the cause of this abdominal pain. He doesn't know why I have pain- which I don't understand bc when he pushed on my bladder inside and outside I yelled. he didn't say one word.. Well anyway I have spent months trying to figure out if I should have surgery for these prolapses. This is a very big decision, after all the research I have done I have learned that these surgeries are not very successful.
I spent months trying to find a doctor who believes in uterine preservation. I was ready to fly all over to get the help I need. BUT yesterday changed all that.
I went in to have a pap and the doctor assistant after listening to me did my exam and I encouraged her to really poke around and look real good for a reason why I am in pain and why I can't urinate. She hits these two areas that always hurt when I am examined and she gets all excited, yells OMG I know what is wrong with you... Runs out and get this brochure and yep its this IC thing. She has me down to have that camera thingie put into the bladder.. blah blah blah.

But I have to wait until July 1st, docotr has no appointments until then.

So I visit this site last night, read your newbie info ( very good info by the way) I am doing everything wrong that I could possibly do wrong if you have this IC.
I have a urine test done I swear every other week. Never anything wrong with it.
But it feels like I have a bladder infection. Then I can't urinate, so I think oh... the prolapse is pinching things off.
Well really I can urinate, in fact I got over 20 times a day, but it hardly comes out.
Anyway I always think I have a bladder infection so what do I drink all the time??? and by the gallon... cranberry juice... I am so over whelmed and tired but now I have to learn about this.
I have had chronic Epstein barr virus for over 30 years. lost all my lymph nodes from the waist up. (I manage it real good these days.) I started getting severe migraines two years ago and of course with all this stress all these things are getting worse. I am in so much pain...
I want to know about the vitamins, I take a lot of them, I take the Dr. Weil vitamins. One of them is ginseng for my chronic Epstein barr, is this something that can make IC worse?
Other the that question I am not going to ask any more right now. I can't sit at my computer, so my husband got me a lap top two weeks ago, turns out that is to heavy on my lap and hot... making everything even worse. So I will just read off and on and learn what I need to.
But if someone knows about what vitamins to avoid I would appreciate knowing.
I have no idea how you all deal with this... Just from what I have read this is as bad as the prolapses. This is ruining my sex life just like the prolapses.
I just can't see any light at the end of the tunnel.
thanks for listening.
hugs,
callie

[ophelia]

:welcome:Wow you have been through alot. Everybody is going to say try the IC diet and it is so true! Cranberry juice will really hurt an ic bladder. The diet can be overwhelming at first, but can make a difference in your pain and frequency. If you are drinking coffee, cutting out that alone can make a big difference. It's worth a try until your next appointment. I hope you find answers and relief. Best of luck to you!

[KarenAnne]

They have lap trays in most stores (Bed,Bath,&Beyond for one) & you can put your laptop on the tray. This will take the pressure off.

What kind of prolapse do you have? Uterine? Bladder? Rectal? Any of these can cause symptoms. I have seen several drs. to get the proper treatment for my IC. It is frustrating to find a good dr. Did the dr. at Stanford or the physician assistant order a CT scan of the abdomen? If I were you, I would find a knowledeable, compassionate doctor, who does a complete work-up to get to the bottom of all this. There are several other conditions that can cause the same symptoms as interstitial cystitis. Recruit your husband or a friend to help you if you are overwhelmed. Hang in there.

[callie12]

Thank you all for the supportive posts.
I have had gone the rounds for over 2 years trying to find the cause of my painful sex and and immense amount of abdominal pain. The 3 prolapse are what everyone thought was the problem. I have had ultrasound. I have a rectocele, cystecele, and a uterine prolapse that is getting worse pretty quickly.( I had a uterine suspension over 30 years ago and it has torn loose on one side) I have also been told by one doc I have and enterocele but this was not confirmed with the two other docs.
This IC sounds like it may be the problem. I have so many immune issues. One of my very biggest problems is I have candidsis, not vaginally, in fact never in that area. I have it in my mouth and all other openings. like... esophagus, stomach, rectum, ears and such... I have only been able to control it, my T -cells are the problem, there is no fix for it.. I can only keep it under control. I think this may be the root of all my immune issues. I take lots of culterelle (sp)
I just saw on here something about Vit B ...I take a very high dose of B's sublingually every day. Is this something I should stop?
I don't drink any alcohol as even one drop sends the yeast right into yeasty hog heaven. I drink maybe 1/2 cup of coffee a day. I can cut that out.
I don't drink much soda and for sugar I use stevia, xylitol and erythritol.
I love bread ( I know bad bad for my thrush) and lots of sweets and raspberries I die for. I eat salmon a lot, no red meat. Love spaghetti, love anything with a heavy cream white wine sauce or with sherry. Alcohol is cooked off.. I hope.. also I am very thin.)) So there are some things that need to be changed if I have this IC.
I gotta do something I am going to the bathroom 20 times a day and just tiny amounts. Last night I got up 6 times. I am so tired. Its the pain that I can't take though.
Hey that lap thing from bed & bath sounds perfect. My husband just ordered me another lap top that weighs almost 3 pounds, this will help I hope.
Ok I need to keep reading about this. The doctors office called this morning and want me to come in sooner, they are so convinced I have this. They have the pre op , surgery and post op all set up.
I am also having another ultrasound. So it all begins again.
Again thank you for the help...
hugs,
callie.

[KarenAnne]

:grouphug: Best of luck with everything!:pray:

[vm]

Here some vitamin and mineral info from the site:

http://www.ic-network.com/handbook/vitamins.html

[Mrs. Peel]

Callie, I wish I could reach out and help you. I forget how many members there are at the ICN (A LOT), but the odds are probable that someone here has been through almost exactly the same things as you.

I have only been here a month or two, but I have seen posts about Candidiasis, Thrush, and yeast infections. You can find threads about them easily with an in-forum search.

Ester-C is safe for me.

I hope you get taken care of soon. Stay away from soda, especially diet. To dilute your urine and make it less irritating, drink all the water you can stand.

Sounds like you've got a good husband, there! Mega-points for him!

[callie12]

oh of course I use diet soda, just had one! I can't read fast enough. I am seriously in more pain then I have ever been in. You know everything was moving along with the prolapse things just fine and then 3 weeks it all started...... not being able to pee and the pain has been worse. I have had this pain in my bladder for about 6 years. Not to this level, but I am remembering back and I have had this for long time. The not being able get a steam going and stream oh yah what stream? It just kinda goes plunk plunk.... My family doctor gave me flomax 2 weeks ago and it kinda worked. But its not FDA approved for women. I take it when I can't stand the pain anymore. I am on celebrex but I can only take one a day and I am saving for closer to night time, when I am in the worst pain. I am close to going to the ER right now, but what'd they gonna do...
again many thanks for crash course. Geeze ya can't have anything but water..
This sucks!

[callie12]

Ok Now I am really freaking out.. VM I went to the vitamin link..
there is no way I can live without vitamins.. seriously this will never happen.
I am on many prescription things, potassium, folic and B6 and B12 are all on doctors orders. Seriously I 'll be in worse shape.... I take lots of difluican and nyastatins ...
need I go on.... I might as well shoot myself now...
I thought the prolapses was the worst thing a person could get, its taken me months to wrap my brain around that whole thing and now this....
Maybe I don't have this IC after all.
Yah I am thinking I don't have it. My new puppy has been jumping on my stomach area.
I bet that's it...
and one more thing... this whole thing is like the epstein barr I have, another designer disease. No proof ya have it... all in the head crap... ERRrrrr I am so mad right now.

[Preacher-Girl]

I'm so sorry Callie. Like you I have several things wrong with me and I can assure you we are not alone. Many of us have several health issues to deal with. I am always exhausted - I have sleep apnea which has similar symptoms to chronic fatigue/Epstein Barr. People have Lupus and Fibro here too. And many have had prolapses. So we do understand and know how awful it is. I know you just don't want another thing wrong with you! But when all is said and done you will be able to handle your IC. It takes a little time but if you start the diet right away you will begin to feel some relief. I know it's hard to believe but you will be alright. Really.:)

[callie12]

yeah you guys are so calm in here. I am not calm, I won't be calm. I am freaking out.

[Just one Moment]

oh of course I use diet soda, just had one! I can't read fast enough. I am seriously in more pain then I have ever been in. You know everything was moving along with the prolapse things just fine and then 3 weeks it all started...... not being able to pee and the pain has been worse. I have had this pain in my bladder for about 6 years. Not to this level, but I am remembering back and I have had this for long time. The not being able get a steam going and stream oh yah what stream? It just kinda goes plunk plunk.... My family doctor gave me flomax 2 weeks ago and it kinda worked. But its not FDA approved for women. I take it when I can't stand the pain anymore. I am on celebrex but I can only take one a day and I am saving for closer to night time, when I am in the worst pain. I am close to going to the ER right now, but what'd they gonna do...
again many thanks for crash course. Geeze ya can't have anything but water..
This sucks!


Hi, Callie, and :welcome: I'm pretty new here myself, but just had to warn you.... water isn't always safe, either... I just realized middle of last week when I was flariing again that the culprit was the bottled water that's brought into my office at work. I wish I could say I'm kidding.

Good luck to you...I hope you get some relief soon!

[vm]

Some of us might be calm right now, callie, but trust me when I say we have ALL had our moments, days, weeks, etc. of panic with this IC thing. I remember logging off of here bawling my head off feeling so incredibly overwhelmed. We have been there and we really do understand. :kissing:

Remember, too, you speak for others when you post about your fear and confusion. I am sure many more people read than post here and right now someone else who is feeling as you do is somehow comforted a little by the fact that he or she isn't alone in this. You have helped someone else by posting all you have here. That may not mean much right now in the midst of the storm - but it will later.

Maybe you can meet with a dietitian to discuss your vitamin needs. Most will work WITH your doctor to make sure you get what you need - or find creative ways to get those needs met a little differently.

Hang in there, OK?

[BT2008]

Hey Callie,:hi:

I am so sorry you are having so many problems! I hope you get everything under control sooner rather than later, and I hope that you don't have IC when all is said and done!

I also have a prominent cystocele (and rectocele), which my gyn doesn't want to do anything about because doing anything to my bladder would just aggravate my IC. But, I do have a suggestion for you that might help you in several ways: I have found that standing-up to pee works wonders for both urinary flow and less spasm pain. Moreover, the lack of pressure from sitting down and straining also keeps the cystocele from feeling like it is falling out of my vagina. The first few days of experimentation I used a regular kitchen funnel to keep from peeing on myself while learning to pee standing-up, but my hubby went to an automotive supply store and bought me a special funnel that is used for putting oil into engines. Believe it or not, the top opening of the funnel is oval shaped and fits perfectly around my vulva area and I am able to pee standing up without a problem. The exact same thing is being sold on the internet for women (called a "She-Wee") but it costs $11.95 + shipping, and the funnel my hubby bought was only 99 cents! :)

Also, go to a health food store and buy some pH testing strips and drink only waters and other liquids that have a 6.0-7.0 pH balance (7.0 is neutral and is the wisest choice, but 6.0 is better than more acidic). And no, do not just assume that because it is bottled or filtered that the water you are drinking is okay. Long story short, I ended up drinking our public tap water because it actually has a perfectly neutral pH and every other water I have tested is a lot more acidic.

I have a few other things I could add, but these two suggestions are things you can do simply enough without needing a prescription or having to wait for a doc appt. And both have really helped me a lot.

Take care, and try not to freak out too much in one sitting, but give yourself permission to freak out if you need to! Like Kim said, we have all done it on more than one occasion! But remember, knowledge is power, and you are in the right place here at the ICN for the knowledge you need.

~Beth

[c2miracle]

:smile tee Hello, Just want to say welcome to our always supportive IC forum. I wish you pain free days once you know what the heck is going on. We all have "poo-poo" days and we may come on here just to vent sometimes. Hang in there and Think Positive! :smile tee

[Just one Moment]

Hey Callie,:hi:


Also, go to a health food store and buy some pH testing strips and drink only waters and other liquids that have a 6.0-7.0 pH balance (7.0 is neutral and is the wisest choice, but 6.0 is better than more acidic). And no, do not just assume that because it is bottled or filtered that the water you are drinking is okay. Long story short, I ended up drinking our public tap water because it actually has a perfectly neutral pH and every other water I have tested is a lot more acidic.

I have a few other things I could add, but these two suggestions are things you can do simply enough without needing a prescription or having to wait for a doc appt. And both have really helped me a lot.

Take care, and try not to freak out too much in one sitting, but give yourself permission to freak out if you need to! Like Kim said, we have all done it on more than one occasion! But remember, knowledge is power, and you are in the right place here at the ICN for the knowledge you need.

~Beth


Thank your for clarifying the point about the water. I came back because I realized my message may have scared some, even though I specified it was the water in my office, and didn't recall where on the site I'd found info about water but was going to look for a link.

In my case so far, it WAS just the water in my office building; I drink other waters just fine and didn't mean to imply that any/all water was likely to cauase a flare.

[callie12]

Ok you guys quit being so nice... Its hard to be pissy...
I took a celebrex and a soma and I am not in pain! I hate being all high though. So I am going to try to place nice....

No really I do appreciate all the good tips. The standing up to pee I will give a try. The doctors tell me to push on my bladder when I am going. Oh yah that's just what I want to do when thats right where the pain is...
I used to do something like that to have a bowel movement. I get up on the toilet rim and go in that squatting postiton.. I don't do that or splint as often.
The prolapses seem to shift around and mask all kinds of things so I had to splint everytime 2 months ago and now I don't. But now I have to do something to urinate.

I feel like I can't put anything in my mouth, I mean we have to watch out for water???


I have been reading a lot of the journal papers and this helps me understand. See when I don't see any science behind an illness I know getting a docotr to help me isn't going to happen. I hate chasing around cures and have doctors who treat us like we're mental
( although right now I am ... )
I should feel different if I stopped just the cranberry juice don't you think.
This crap is ruining my life and even though the hubby says he won't leave me cause we can't have sex ( I have to use dialators first, but its still very painful) I know this may not be true. See he says this 5 minutes AFTER he's gotten it. I won't hear that two weeks down the road and he's not had it... I know there are other ways to have sex, but don't go there with me cause it ain't happening!

My new little red laptop just arrived, its so cute and light, can't wait for the husband to come home and set it up. Its a distraction at least.
I am sorry to vent all day... like you need to hear some new whiner....
At least you all understand and 'get it'.

I belong to a forum that Dr. Magnus Murphy in Canada has set up for us prolapse victims. This is also a helpful forum if you have prolapse...http://forum.pelvicfloor.com/forum/index.html
I have spent hours trying to get control of my life with these prolapses and now to have go through all this learning and changing life style again makes me crazy. Can I please have a health issue that can be treated a little more easily.... or at least one I have heard of or can pronounce!
I was so happy when I had never even heard of a pelvic floor.
I 'll try to come in here tomorrow with a happy attitude.
Thanks for being so sweet and understanding. The little happy face thingies made me laugh!
Hugs,
Callie

[dg2901]

From a prolapse suffered myself, dont bank on it being the prolapses that are causing your pain. While the issue can most certainly cause pressure and voiding difficulties, the chance that the pain you're experiencing is coming from either prolapse is not probable.
Been there, done that, and am still here today complaining about my bladder.

Like mentioned, there hasnt been one person to join this site who introduced themselves as being calm--trust me. 99.9% of us have been down the road of intense pain, the "why me", Dr chasing, doubting ourselves, being "mental", etc. You're not the first one, and you wont be the last! :loco: :lmao:

Good luck to you!
Diana :)

[BT2008]

Since my bladder prolapse is relatively new, I can definitely say that since it fell the pain can be more frequent, because anything that "messes" with my bladder makes it very, very angry! It also adds that "wad of cotton stuffed up inside my vagina" feeling, as well as the "giant tampon is falling out" feeling.

However, as I posted earlier, standing up to pee really helps to keep my bladder from pushing into my vagina so often, which also keeps my vagina from pushing up against my bladder so much. And these things keep my bladder from taking its misery out on me!!

Would I say that the majority of my pain comes from the prolapse?? Oh god no!! Any additional pain I have from the prolapse is merely a blip on the screen of my IC pain! It's not the prolapse of the bladder that causes pain. It's the IC in the bladder that is the culprit.

~Beth

[callie12]

Hi Diana,
Yeah I was most certainly banking on the prolapse being my problem. I am so confused.
I just know that when the uterus suspension that was surgically suspended 30 some years ago broke free on the left side all these problems started, painful sex and then bowel trouble and now the urine problems with more pain.
But I do know that when anyone examines me and pushes on the inside or outside on or near the bladder its very painful. So I think your right about the prolapse not being the problem.
I just want to be normal again, or I 'll take 40 % normal...
But before I can anything I must be diagnoised. So far this isn't happening.
I am not very patient especially when I am so confused.
I know I am not the first and don't have any desire to be first - last or in between. I just like the rest on here want to know what is causing my pain, and prevent it from getting worse and maybe even tone down the discomfort.
Sharing my anxiety, fears and pain is all part of getting to my end goal.
We are so lucky to have these venues in which we can share.
Thanks for your post and I hope the bunny reaches her goals too!
Hugs,
Callie

[bluetou]

(((HUGS)))) and welcome :welcome:

I also suffered from Candida (but showed no signs vaginally)...I was placed on 12 weeks of DETROL, along with doing the candida cleanse diet. It really helped calm my IC down.

Really important to follow the IC diet too, cutting out trigger foods from your diet will help your pain tremendously. I know it was a life saviour for me.

Just remember some supplements and foods some peope on the IC network can tolerate, and others can not. What may work for another may not work for you or I. I know for example I can not tolerate the ESTER C. BUT some here on the network can take it with no issue. Try and journal everything you place into your body so you can find out what is helping and what is not (((HUGS)) hang in there....

Peace to you
Blue
:pray:

[carolinasue]

Hi Callie, :welcome:

I'm new to the forum too. You have a lot on your plate, but try not to get too stressed out over it. You're doing all the right things, reading, asking questions, informing yourself.

You'll have to work with your doctors to find the right combinations of things which will work for you, but you will do that in due course of time. You didn't get to this point in a day, or a week or a month (I know I didn't either!) and it will take time to sort things out.

This is a great group of people, and all have something to offer. I know I'm not too happy giving up my coffee either (and here I thought that decaffeinated would still be okay) :mad: and chocolate and all of the other things which are bad for us.

But, the body knows best. It's about time I started listening to mine too! :smile tee

Hugs and Love,
Puddles :hi:

[ophelia]

Hi Callie, I just wanted to ask if self-cathing was an option for you? I too have a very weak stream and sometimes no stream and have to self-cathe. I am fortunate not to have too many urethral pain issues. If you can tolerate a catheter maybe it could give you a little relief? Maybe something to ask the doc? Again, best of luck.

[SharonA]

You have been getting some very good advice so I am just going to say :welcome: to the IC Network.

Okay...I am going to say something else. :) You don't have to try to learn everything about IC all at once. A brain dump is not what you need right now. Take your time. That's what I did in the beginning. There is so much to learn. It is easier and much less stressful if you take your time.

I am also going to advise that you do read the information about the IC Diet. It really is very important to learn what, if any, foods/drinks cause symptoms. I am not very diet sensitive, but I do have triggers that can make my bladder very angry at me. You can find the link to the diet in my signature below.

Sending you (((hugs)))...

[callie12]

Hi Everyone,
Well I am still here..
Hey bluetou, so you think that the candida has an effect on how your bladder/
I do a candida cleanse that I get at the health food store and I find that culturell helps a lot.
I appreciate your reminding that everyones different and some can tolerate vitamins and others can't.
The diet thing I guess I will have to follow at least until I can get the pain to a level that I can tolerate.
Its encouraging to see that your having success. I still have so much to learn.
Thank you for helping me.
Hugs
callie

[callie12]

Hey carolinasue you mentioned coffee, have you tried that low acid coffee that many are talking about on this forum ? Does it help and how does it taste?
I don't have more then 1 cup a day but I do enjoy that one cup.
This is hard...
I am concerned that I may not even have this IC, I have not been tested yet.My doctor seems pretty convinced that Ihave it.
I will have the camera/scope procedure and maybe that will confirm what seems to be IC.
Hugs,
callie

[callie12]

OMG ophelia, cath? as stick something up the thing that is for peeing?
I could never do that. That is really freaking me out... is that what a lot IC victims do?
Oh man I know if I can't pee I have to do something, one poster said maybe try standing up. Iam trying first... Did you try that?
hugs,
callie

[callie12]

Hi Sharon,
You mentioned triggers that make your bladder very angry, I was wondering if you think the pelvic exam I had could have made my pain so bad later that night? It was the worse pain I have ever had. You know I was in here whining about everything.
Also I was wondering once its found that you have damage inside the bladder/wall can or does that ever heal itself? If you were to eat right and you went in to have that scope put back into you several months later would your bladder still show the ulcers or whatever is messed up like it did when you had the scope put in there the first time?

Also I don't know if I have this IC, I have horrible pain on my bladder and in the abdomen. I have a hard time peeing, but I don't have the urgency I hear you all talk about.
I never have to rush to the bathroom. Also some days I pee 15 times and some days I pee normal amount, like 7-8 times a day.
Does any of that still make it possible that I have IC ?
I am concerned about what I am going to do if I don't have this..
I have had my prolapses looked at until I am blue in the face and surgery is not necessary at this time. I have all this pain and I just want to know what it is. Did any of you have hard time pinning down if you had IC or not?
Thanks to all of you for so much love and help.
Hugs,
callie

[SharonA]

Pelvics so send my bladder into fits. It's that touching thing it does not like. My PCP tries to be gentle, but I don't think anyone can be gentle enough to not cause some kind of reaction with my bladder.

You asked a very complicated question when you asked if the bladder would heal over time. You will get a lot of opinions on that subject. Personally, I think it is possible to calm the bladder down enough that the symptoms will subside over time. But...That doesn't mean that I don't still have IC. What it does mean is that I have taken control and do not allow myself to put my bladder at risk by dumping a lot of problems into it.

Like I said, I am not very diet sensitive. I can eat a lot of things that other can not. But...I do have diet triggers. I can't have citrus anything. If I do, my bladder lets me know that I have done something pretty bad to it. It's a shame too because I really love a good orange. So now, even after all these years, I have to be satisfied with the aroma of an orange. Thank God my bladder doesn't care how many I get a whiff of.

I need to add here, that I am not brave enough to risk going back to the type of pain I was in before I got control of my symptoms just to eat or drink something that I, personally, should not. I will probably never test that out. I try to avoid pain at all costs. I decided years ago that, no matter how tempted I get over an orange, or other problem foods, there isn't anything out there that is worth risking having that much pain for, ever again.

I also need to tell you that I am on Elavil 25mg and have been for years. So, I did find the medication that helps control my pain and will probably be on it the rest of my life. It is something else that I don't have the courage to test out to see if I can do without it. Elavil and the IC Diet plus an occasional Prelief, if I am concerned about a certain food when I am not eating at home, has helped me live my life pretty much pain free.

I really don't have very many problems with frequency, unless I am in a flare. Stress is my #1 trigger and I can flare when I am unable to control stress factors. I try to not let things get to me, but sometimes I fail with that. That is when I flare and my frequency picks up. Normally I void about 12 times a day and may get up 1 time at night. If I am flaring, I go around 20 or so times per day.

I hope you are able to get answers as to what is causing your symptoms. I think not knowing was the worst part of this whole thing. Once I got a diagnosis, I at least knew it wasn't something life threatening.

[Preacher-Girl]

You need to put away the coffee for now. It is the top of the list for things that harm an IC bladder. Just one cup a day won't do you any favors and it will hurt an out-of-control bladder. There are coffee substitutes you can try a little later - when you are not in a flare. Please do your best to follow the IC diet. You won't get it perfect but a month on it won't hurt you. If you don't have IC you can just stop the diet. The diet is key and you won't know how much it helps until you try it.

Hang around for a while and you will find out we are not always calm. In the beginning, before I was a member, just looking at the site made me flare. I just flipped out the minute I started reading and had to run to the bathroom!

We are calm because we know it gets better and that, for many, is a comforting thought. You will get better and it will work out. Right now, it just looks really bad. Later you will find out you can handle it.

[carolinasue]

Hi Callie,

In answer to your question, I've not tried the coffee yet. I am very new also, and you can find my post just a couple of days before or after yours!
(If you are interested in reading further). I'm not diagnosed yet, and I don't have medical insurance, so this is going to be a challenge. But I had a flare, tried two different antibiotics to no effect - and arrived at the conclusion that this has been building for years and now it is time to pay the piper for all of my past (food and drink) sins. :smile tee

Anyway I *think* the flare had to do with a Brita water filter, which I didn't change in a timely manner. I have been doing a lot of reading on the board, and looked up water filters, just for the heck of it and read that if you don't change your filter on time, it can actually dump toxins into your water! The same ones it had filtered out.

I had a problem with pesticide at a senior place I was attempting to move into, so I think I'm overly sensitive to toxins already. And I know I haven't been treating my bladder kindly over the years. So, I'm trying to avoid *any* kind of triggers at the moment. I'll let you know how the coffee is as soon as I try it! :cat:

Anyway, hang in there, it's a day at a time and we're all trying to figure out what's what. It's nice to know that none of us is in this alone, though isn't it?

Hugs,
Puddles :hi:

[ophelia]

Callie, I didn't mean to freak you out. No, I don't think alot of Ic patients self-cathe. Some do and get relief from it. It is scary at first, but once you get used to it(if you do not have urethral pain)it is not bad and if you are having trouble emptying it can give relief. I don't have to do it very often. Standing up then sitting back down often can get more out. I'm not able to pee standing up due to muscle tension. I just thought it was something to ask the doctor as an option to help empty your bladder. I can understand your aversion to it, nobody's idea of fun. I'm sure your doctor as many options for you. Cutting the coffee out could really make a difference for you.

[valkay18]

Hi Callie.... You have gotten great advice from everyone here, but I do want to mention something that no one else did. This is regarding one of your first posts in this thread about vitamins. I am VERY diet sensitive and very vitamin sensitive. Most vitamins KILL my bladder, but I recently bought prenatals from a natural food store, and was shocked to find out that they didn't irritate my bladder at all. In fact, I have improved since I started taking them. They also have probiotics in them. The reason they don't hurt the bladder as bad as normal vitamins is because they vitamins come in the most easily absorbed form by the body. They come from all natural sources. You should do a little research on them, and see if they might be good for you. They have daily vitamins that are not for pregnancy as well. So, maybe those would be good for you.

[carolinasue]

Hi Callie,

Just to let you know, I just picked up some Caffree Roma at our local health food store. It's great! Doesn't taste like real coffee, but close enough to be enjoyable.

And when I was at my friend's house, she mentioned Aloe Vera for problems with GERD/Acid Reflux. The Aloe Vera she served me did have citric acid in it, but it's the first time I've stopped feeling the urge to go in about three weeks. :woohoo:

On the way home, I picked up some 100% Aloe Vera at the same health food store. Apparently the dosage is 2 oz a day and I think I'll take that as long as I need to, until this flare dies down.

Then we'll see how things go.

Hang In There

Hugs,
Puddles :hi:

[callie12]

I agree the quality of vitamins makes a BIG difference. I used take cheap ones and they where so hard on my stomach. There was no way I could take them. I now take *** vitamins and they have never bothered my stomach and he makes sure the vitamins are very absorbable and highest quality. ( he has to take them himself) They cost big bucks but so worth it. You take the health test on his site then they come up with the vitamins they feel are right for you and your health issues. You can take all they recommend or just the important ones. They then put together a morning packet and an evening packet.
Excellent vitamins.
You know I have been experimenting with foods and vitamins. I don't see that coffee or anything else is causing any pain. I have not been diagnosed for sure yet. I have noticed that when I am doing to much, walking or playing with my dog that I am in awful pain that night and the next day. Do you or anyone else notice that exercise or lots of activity has an effect on you???
If I watch my diet then maybe the exercise wouldn't bother me.. is that how how it works?

[ICNDonna]

My bladder prolapse caused me a great deal of pain --- enough that I didn't argue about having a sling put in. I have not regretted the surgery even once. It really made a huge difference.

Donna

[tmog]

If you are drinking coffee, cutting out that alone can make a big difference.

Yes! Very true statement that should be taken Seriously! I can attest to having a 50% reduction in my suffering, just by eliminating coffee. My coffee drinking history goes all the way back to 1986. Just like smoking I had to quit 3 weeks ago. I haven't found a comparable replacement for my coffee yet. I'm tired of drinking water. Can't have my juices any longer or my vitamins. I'm hoping I don't develop scurvy. I may even have my bladder removed and just add a plastic bag in it's place.

[tmog]

I agree the quality of vitamins makes a BIG difference. I used take cheap ones and they where so hard on my stomach. There was no way I could take them. I now take *** vitamins and they have never bothered my stomach and he makes sure the vitamins are very absorbable and highest quality. ( he has to take them himself) They cost big bucks but so worth it. You take the health test on his site then they come up with the vitamins they feel are right for you and your health issues. You can take all they recommend or just the important ones. They then put together a morning packet and an evening packet.
Excellent vitamins.
You know I have been experimenting with foods and vitamins. I don't see that coffee or anything else is causing any pain. I have not been diagnosed for sure yet. I have noticed that when I am doing to much, walking or playing with my dog that I am in awful pain that night and the next day. Do you or anyone else notice that exercise or lots of activity has an effect on you???
If I watch my diet then maybe the exercise wouldn't bother me.. is that how how it works?

What are these vitamins you're referring to? All I see is asterisk***