I am so discouraged!!!

[Kimberly31]

I am soooooooooooo discouraged!:mad: I got diagnosed about a year ago in having IC by hydrodistention. I have done just about everything I can do at this point to help myself and my body just doesnt seem to be doing its part! UGH!! The life with IC.
I have been on Elimiron, Elivil,Wellbutrin,Atarax, and pain meds for over a year now. I have tried DMSO it failed actually made me worse! I feel like I am not going forwards.
I finally switched Dr.s and this one is reallly a great Uro! Well after treating me for the past 5 months we decided that he needed to do a Cysto/Hydro so he could look in the bladder himself and see what is going on. Because in the past 6 months I have been battling the lovely UTI's on antibiotic therapy. So,,,,,I had it done 2 weeks ago and the Dr. said that what a mess my bladder is it has glumerations***and the ulcers you name it I have it and this is after a year of Elimron and everthing else I have been taking. Well the Dr. "tore the bladder lining" which was intended for the 3rd distention in hopes that it would just be a extra THERAPY do. AND when i woke up i thought i had died and gone to hell!!! Went back to work for about 10 hours last week and then today tried to go in and didnt even make it through 4 hours and I need to go to bed I feel like I am going backwards. I know I am not being patient but really feel like I am going backwards and very frustrated with myself!!!!!!! Sorry kind of having a pity party right now I just want so much to move on with my life,,,,,,,,,,,,,,,,,Sorry to vent like this but I guess i need to get it out and I live for this website all the wonderful people and so supportive everyone is.
Well ty for listening to me vent I need to go to bed now.......LOL
Hope you all are having a pain free day
Kim:angel:

[kelly McC]

:grouphug: :grouphug: kim,
I am sorry and hope you can get some relief soon. I will keep you in my prayers.:pray:
Kelly

[SharonA]

Kim...:kissing:

I do not have any sage wisdom for you. I wish there was something I could do to make it all better but, sadly, all I can do is give you a gentle hug and a big :kissing:. I hope things get better for you in the very near future. :)

[DIANE104]

Dear Kelly,

One thing I've learned is that doctors are so anxious to do that hydro distention- and then nothing. Since I was diagnosed 15 years ago I have had four. Each new doctor wants to do one. One doctor wanted to do two. After the first one, when he couldn't get me out of pain, his only suggestion was "let's go back in and take another look." It's so frustrating because they're so painful. I could relate when you said you woke up in hell. The thing is, after they do the procedure, they don't want to treat the pain-which is all they can do for IC. I wish I hadn't wasted so many years letting doctors dictate to me-giving me tylenol 3 and neurontin, and ULTRACET, when they could see I was in serious severe pain. I'm happy for the ones that can get relief from these medications, but my pain really warranted something much stronger. I finally went to my primary, so defeated, in tears, and after five years with him he finally suggested methadone, which finally finally took me completely out of pain. I wish you the best, don't give up, their are medications out there for severe pain, just not enough doctors willing to perscribe them.

Hugs,
Diane

[HillaryD]

Kim,
I'm sorry, but I can't really help. All I can do is send you bunches of hugs and tell you that I will keep you in my prayers. :pray:
:kiss:
Hillary

[Sarojini]

I'm sorry you are going through all of this... all I can do is send :grouphug: and :kiss:... and hope with you for a better tomorrow.

[dyno]

Sending wishes that you are feeling better soon.:kiss:

[lotsofgirls]

Hi Kimberly,
I know what you are going through. I was diagnosed about 3 years ago and for the first year or more I kept trying new treatments and they failed. I was so frustrated and discouraged. The best thing for me has been the Pain Clinic, I am starting to accept and understand IC better. I know you want to get better, I wish I could help you. Take care of yourself, take pain meds for the pain, and do what you can, and get rest. Hopefully your bladder will start to heal a little.
Cath:pray:

[ICNDonna]

If you're still in pain two weeks after a hydrodistention, it could be that you have an infection. I have had 35 hydrodistentions in my 29 years with diagnosed IC. They always seem to help me. I know it only works in about 50% of IC patients, but that's probably why doctors want to keep trying.

If you do not have infection, it might be time to talk to your doctor about referral to a pain center.

Warm healing thoughts,
Donna

[Kimberly31]

:hi: You guys on this network are truly angels:kiss:
When I checked my messages to this post I cried when I read them it is so nice I have a place to come and know that you have the love, prayers, & support ALL THE TIME!
Just to let you know a couple things I left out. I do check myself daily with the Reagent Strips to check for a infection. This morning it was showing very little not enough to even get to the Dr. about yet unfortunately I have learned that if you go too soon you knowing that you have a infection they will say well the lab said you didnt!!!! Only because you didnt want to wait until you could'nt get out of bed before you went in for a urine sample. Anyways I am keeping a watch on that and have already been on Antibiotic Therapy for the past 6 months too (which hasnt helped much):rolleyes:
The second thing is I am being treated for pain I take Lortab 5/500 which is not the best but it works if I stay on top of it at all times. So between that and rest I know I will get better.
I am sure you all totally understand how difficult for us to have patience when your bladder is on fire!! Someone may as well be standing at my belly with a lighter! UGHHHHHHHHHHH:(
Thanks so much for listening and responding it means a whole lot to me.
Kim