You all scared me now and I have DMSO in 3 days :(

[Calli]

I thought it is not painless, like cystoscopy or urodinamic research. My doc said that I will only have a bad breath but it varies from person to person.

Now I read this forum and I suddenly wish I didn't read it. He said they will keep feeling it in for an hour and that I will see results in 6-8 weeks. But that I can feel worse... I asked him this and he said no.

Im logging off, Im in a bad mood now.

[crystilclear]

Sorry you feel that way. Everyone's experience is different. Some people may have no pain at all and some a little and some more so. It's just the same as some people can benefit from other medications and other's don't. IC is different from person to person. No one would want or try and make you upset about it. Even if you have a little discomfort they usually give you a pain pill. And in my experience it hurt for the first day then subsided. For me it helped my night time frequency. Don't get so discouraged from everything you read. Some of the ladies here have very servere cases and itis very painful for them and myself. I've had very good experiences with this site. The people here are very encouraging and sympathetic. They share in eachother's pains and in eachother's sucesses too. For some people this is the only place they can come to where people understand and will listen and not judge them.Talking about good things is just as important as talking about the bad. Who better to understand then people who've gone through it already? I'm sure you'll be fine. This is your health and you should learn as much as you can. It can all seem very overwhelming at times. Just like when you have a baby everyone wants to tell you the right way of doing things... you take the advice you want and find your way through it as best as you can. Elmiron has helped a lot of peole (but it sometimes takes awhile to take affect), prelief helps take the acidity out of food, IC diet helps, and different perscriptions of allergy or special antidepressants help too. Have you tried any of those? For some people diet changes help tremendously. I hope you feel better. You can always try the treatment and if you don't like it then you can discuss with your doctor other options too. You've gotta try some different things somtimes before you find what works best for you. Take care - Chris :)

[Calli]

oh, I didn't mean I would leave the board or anything, this is a WONDERFUL place. I just had to log off and blow some steam with seatups cause this all was getting too much for me.
I just didn't imagine that I could get worse after this treatment, I thought I can only profite from it.

Well, I went to the store now and I bough a bunch of chewing gums and mint refreashments, listerine cool strips and so on. When I come in there on Monday, I will start chewing on them and I will also ask for a painkiller before the treatment starts. Man, with all those gums and strips I will look so funny, lol.

Thanks for your post, it made me feel more positive again.

A lot of love into your direction from me. You are all so wonderful and supportive here, I just sometimes get scared when I read how worse some people are off and that I could get that way. Sorry. I shouldn't complain that much.

Calli

[crystilclear]

Don't ever be sorry that's what we're here for! I hoe you won't get any worse. Hopefully it will benefit you and not make things worse. It's so hard because there isn't one thing that works for us all! Sucks to have it and it sucks that there are definitive answers to all the questions either. Don't feel bad talking here. If we share with eachother our struggles and successes we can benefit from the things we learn from oneanother. I felt the same way it's scary to know you have IC or something like it and not have a quick fix that we are used to getting. It's difficult but not impossible! There's always hope and other things to try if something doesn't work out the way we wanted them too. I know my hubby's very supportive but there's only so much sometimes that he can hear about when I'm yapping about the pain and my irritated bladder. Here it's ok to vent because everyone has felt the same way. I love the pocket strips too. I went through them and a couple packs of gum when I had my treatments done. After one treatment we had to stop by Walmart to go to the bathroom and ick up a couple things.. anyways I walked by and this lady was like mmmmmmmmmmm what smells good like Italian food or something! It was me ewe I realy stunk of garlic. Not only that but my kids didn't want to sit by me and my hubby was commenting on how bad my breath was too. Way to pick on poor old mom! Some people don't smell after the treaments but I sure as hell did! But just for one day. I hope you will feel better after the treatments. Sorry I misunderstood you. Don't appologuise you're not complainig at all. Let me know how it goes for you. Good luck. Take care - Chris :hi: :D

[vm]

Please remember that what you read on the boards is usually the worst about treatments, symptoms, etc. People that do marvelously with a particular treatment or medication don't tend to post about it - b/c they are doing fine. Those who have had a rough time will post to get support, ask questions or get more info.

So, keep that in mind when the boards scare you. ;) I used to log off crying so I know what you mean. :)

[Kathi]

I had NO pain or bad reaction to DMSO. Everyone is different. You'll just have to see how it reacts on you. Hugs, Kathi:thumbsup:

[Katrina]

Knowing about other people's bad experiences had me expecting my first one to be unbearable ....I was nervous. (this was about a weak ago) it ended up being better than expected. It definatly made me feel like I had to go very bad....but it didn't give me other kinds of pain which was a big relief. I did smell.....no doubt. I recommend bring an ice pack with you.....helped me. I also say that while you are holding the medicine in move around as much as you can....helps a lot.

I hope everything goes well for you!

[Calli]

Does it matter if you have menstruation? Is this a problem for this treatment?

[ICNDonna]

Some doctors prefer to wait until after the menstruation; others say it doesn't matter. I suggest you call the doctor's office and ask.

Donna

[Calli]

^Thank you, Dona. I will do so, I have it at 14 30 in the afternoon anyway so I have time to call before that time.

[Lyn40]

Calli,
I am in the same boat you are in. I have my first instillation in 4 days. I have actually scheduled myself for these in the past and then chickened out. I keep thinking about them and wondering if this is the one treatment that may help me. I'll never know until I try. This time I am going through with it, regardless of what experiences I have read about. IC is knocking me down over and over again. I have finally been knocked down enough times to give in to it. If anything, these message boards have taught me what questions to ask and have certainly answered more questions than I can ever ask at the doctors office. I do get scared off by some of the postings, but right now, I am focusing on people like Donna and Rhonda who have been helped by instillations.

Best of luck to you. I will be thinking of you as I go through it myself. Let us know how you are doing.

Lyn
:grouphug:

[Katrina]

Good luck Calli and Lyn. Lyn you know if it is bad just go ahead of time.......don't force yourself to go through more than you can take....and with that in mind be confident that it won't be too bad....because the second it is you can stop it.


I know it varies for everyone but I can normally handle it.....I tell my husband "distract me, distract me" So having someone there that is good at making you laugh and helping you through hard times makes a big difference.

I pray for you both

[Lyn40]

Thank you Katrina!

Lyn
:grouphug:

[IBNPAIN]

Calli,
I know you are anxious about having your instillations, but I am having them now, and I have had 7 of them, and they aren't that bad for me.

The first one was pretty rough, because I was in so much pain the day I went for it. I did fine right after actual instillation, and I held it in fine for about 45 minutes, but when I went to pee it out I felt like someone had poured battery acid inside of me. I was getting ready to go to work and there was no way I could make it and they are already making things hard for me at work, so I just broke down and started crying. My husband told me to call the doctor right then. I did and got the nurse and she could tell I was really upset and she said the doctor was with another patient and would have to call me back. I was amazed when the phone rang about 10 minutes later. He phoned in something for pain that turned my pee blue, Uristat I think, and told me to take the week off from work. He wrote my company a note explaining my disease and they granted me an FMLA. (family medical leave act)
After I laid down for a few hours the pain subsided and I felt like an ass for going so physco like that, but I was scared and in pain.

The next instillation went better and with the exception of the one I had when I was on my period, they really weren't that bad anymore and they do seem to help me out for a few days.

My doctor said it was fine to have them done when you were on your period, but personally, if you can avoid it, I would hold off. I tend to flair badly the day before and the day I start.

I'm sure you will do fine. I know you said you don't pray, but I do, and I will be praying for you and thinking about you and waiting to hear how things turned out.

You must let us all know how you are doing.

Oh and thanks for the personal message you left me. It was so great to hear from you.

Good luck.

Carol

[makeyourday]

I started Elmiron, then had DMSO treatments. My nurse was very good and gentle. Got to be by the later appointments, I would just slide down the table, we would chat, and boom I was out of there to go hang out out at home for a while. The first couple I took off from work the whole day. Then I started going back to work after I held it the advised amount of time. It is not like a Cystoscopy where you are being filled with several CC's. It a small amount of medicine. I was so eager to get better I didn't have a hard time holding it. I was so much better within weeks.
My Dr. was having good results with the combination he was putting in the treatment. His nurse said as soon as he switched his patients were all tolerating the treatments much better. Wasn't till then that I knew different Dr.s use different combo.

[makeyourday]

I meant I started Elmiron around the same time as DMSO. I think I made it read like I went fro one to the other. Still on Elmiron.

ps. I am scheduled for instills of Elmiron on wednesday, but I am so much better, no pain for the last few days. I may cancel. Can anyone tell me if they would cancle if they were doing good?

[Katrina]

I don't think I would but I have other things that are keeping me home besides IC. I don't know what I would do if I was back to normal. I know that I in the situation I am in now I would probably do it to stay good.....but that is just me.

Good luck.

[makeyourday]

Thanks. I really didn't know, because I have only done one round of treatments last December.

[blue]

I had alot of relief, while having the DMSO treatments. It lasted about a week and a half after my last treatment. I've been in alot of pain since. I still think it was worth it, I had six weeks of less pain!