Worse after instill

[Dani72]

Has anyone gotten worse after the instillation?I'm not sure what they put in me but i since Tuesday I have been unable to walk all i can do is lay in bed, I am a thousand times worse. Has this happened to anyone else? Does it get better? Help!!I am scared. Thanks,
Danielle

[amethyst79]

Hi Dani,

Sorry you're in so much pain. I haven't had instillations yet, and I stress yet, but I have heard that the first 2-3 can be brutal. Has your doctor given you any warning signs of allergies or any other problems?

Hope you can get this figured out and feel better!

:grouphug:

Chelle

[Sarojini]

Hi Danielle :)

Sorry you are in so much pain. Sometimes it is possible to have a big flare after instills. I was miserable after my first one, but it got better each time after that. You probably should make sure that you don't have a UTI, too -- especially if you did not take an antibiotic after the instillation. Any time you are cathed, bacteria could spread up the urethra and into the bladder. This can still happen even if you did take an antibiotic, though.

I hope you feel better soon!!

Jen

[Katrina]

:pray: It is common to be worse for a while....and than better....but if you are majorly worse make sure you don't have an infection. So sorry you are suffering.

((((hugs)))),

[Kathi]

Please call you doc to be checked & let him know what's going on & if you don't have any pain pills ask for them. Kathi

[Karyn22]

I know exactly how you are feeling. I started them right before Christmas and it was horrific. I have never felt such pain as I did that first day. I couldn't stand up straight for hours afterward it hurt so much. I wanted to stop them right after the first one but my doctor convinced me to continue so I did. After 2 more rounds and just as much dabilitating pain I told them I couldn't continue. I had that 3rd and last round the beginning of January and I have been 100 times worse since then. It has been like a constant flare for months now. So I don't know about other people but I would not recomend this treatment. I have ben trying more herbal remedies and have had a little bit of relief here and there but I think doing those treatments really screwed me up. I read a great book that has a lot of great info and it was just a great book. "To Wake in Tears" by Catherine ******. It's a great book for anyone with IC to read and has a lot of helpful info in it. Hope you are feeling better soon.

KARYN

(A note from ICNDonna - Neither the ICN, nor any other IC organization in the world, has recommended this book. It is one patient's opinion.. not backed by research. We recommend "The Interstitial Cystitis Survival guide" by Dr. Robert Moldwin as a more reliable option. My apologies, but, for legal reasons, we must add this to any message posted on our boards which recommends this book.)

[amethyst79]

Hi Karyn,

I LOVE that book! I just got it recently and I was reading it and thinking "oh my God... that's ME!" I've been raving about it through PMs for almost a week :) Just wanted to leave a note and 2nd recommendation on it. Great info while reading someone's true story, very wonderful!

Michelle

(A note from ICNDonna - Neither the ICN, nor any other IC organization in the world, has recommended this book. It is one patient's opinion.. not backed by research. We recommend "The Interstitial Cystitis Survival guide" by Dr. Robert Moldwin as a more reliable option. My apologies, but, for legal reasons, we must add this to any message posted on our boards which recommends this book.)

[Dixiefireball]

i have also read that book but i do not agree with some of the things she said she tried i do understand we as icer will do almost anything to get out of pain but remember just because one thing didnt work for one person it doesnt mean it want work for another. personally the dmso saved my life. and I have very serious chornic IC. with three hunner uclers. but the dmso helps take my pain away alone with perocet i have had a great day today i have painted and wall papered my kitchen with no pain medicine just a dmso treatment today i do my own at home.
the servial guide on ic is what helped me make it threw the really rough spots threw time to time and everyone here.
Just because I have tried something and it didn't help me I want say don't do it because it might just help that person.
we are all diff but yet we have to deal with ic as a family we need so support each other in what ever they decide to do as a treatment there doctor ask them to do.
sending you all hugs and prayers
Rhonda.

[felineperson3]

:hi: Karyn,

I've never had the treatments yet, although my Uro has suggested the possibility of trying them. Hopefully as some of the experienced one have stated-it can make you feel worse at first and then it's gets better. We'll hope and pray this is the way it works out for you--:pray:

Hugs & blessings.:cat:

[JessicainArkans]

I had instillations of DMSO, marcain, and two ther ingrediets I cannot remember, I had to race home so fast, but I live one half an hour from the Uro's. I just wanted tp get into a hot bath and soak that ole' urethra!
I found the two day rebound effect unbearable, I could barely get out of bed to go to the bathroom, I could not take life on like other people and the effects lasted about 3 really painful and long days
I have heard this regimine works nicely for some, Rhoda has had a lot of benifits, I am glad they can help some IC sufferer's unfortanately that was not me BOO HOO!
Much concern,
Jessica Day
JessicainArkansas

[ICNDonna]

When I first started DMSO, the treatments were very painful for several days afterwards. I was ready to give up on the DMSO when one night I slept all night! That was enough to convince me to continue. I am now on a monthly schedule and it seems to be keeping my symptoms under control. I don't plan to do much on DMSO day, but the rest of the time I do well.

Warm encouraging hugs,
Donna