Newly diagnosed

[KChideaway]

Hello to all...
I am newly diagnosed with IC. Have been having bladder spasms severely on and off for a couple of years now. Always blamed it on bruising my bladder or childbirth...anyhow...went to the doc and he sent me to a urologist. From there I immediately underwent a cystoscopy (in office), uro-dynamic test and pelvic exam. He suspected IC immediately and scheduled me for a Hydro-distention and urethral dialation. Came back as suspected, I DO positively have IC. I have a very small bladder and almost no capacity. During the test in office, I couldn' t empty my bladder and after an ultrasound showed 2/3rd of my bladder was still filled. Had the surgery (hydro) on Friday the 17 and am still sore. No burning, but feel very bruised. My question is this...how common is flank/kidney pain? I have had such bad pain for two days now. This happened off and on for a couple of months now, but since I am newly diagnosed I wanted to know if there is a relation. I do know, however, that my Urologist did not biopsy for cancer. Should he have? I go back the 3rd of January to discuss medicine options. Also, I have read that IC is an autoimmune disease. Is that true? For now I remain on ditropan and some muscle relaxant for the spasms. The pyridium plus dried me too much and made going to the bathroom impossible so I quit taking that. Any advice would be greatly appreciated.
Thanks....KC :help:

[Dixiefireball]

:hi: and :welcome: to the icn family glad you found us
it is very comman for a uro or a gyn who ever is doing the test to do a biopsy for cancer to make sure there isn't nothing else going on.
I do have a lot of kidney pain even when i dont have infection i thank this is common in some icers.
but since you did just have this done and still having these problems i think you need to call your uro's office back and let them know of these systoms and be tested for a uti.
if you have the time please look at www.ic-network.com/handbook you will find the ic diet there which has helped many icers and they control there ic systoms with the diet and elimron alone.
you will also find other great information on treatments that the doctor do and other test they may want to do on you.
I do hope you feel better soon
sending you much love and prayers
Rhonda

[SharonA]

:welcome: KC...

I am so sorry you are having so many problems. There are many meds that can cause us to retain urine and make it virtually impossible to empty our bladders completely. I think Ditropan may be one of them. I could be wrong here, though. Many have retention problems and have had to learn to cath themselves to relieve it.

There are some discussions about IC being an autoimmune disease. I am not sure if that has been proven as yet.

Please take some time to check out the web site that Rhonda has given you the link for. There is a lot of great information available there that just might be able to answer many of your questions.

I do hope you are able to get answers and receive help. :)

[KChideaway]

Rhonda,
Thank you for your prompt reply. It is so nice to know that there are others out there like me. I feel badly for still feeling "bad" since the surgery on Friday....I feel guilty for not being up and around, I'm just so tired...and achy! I don't think I have a UTI as I have been on antibiotics since Thursday...they gave me some pre-op via an IV and tomorrow is my last day of oral antibiotics. Anyhow...I will call the doctor tomorrow and see what they say.
It was so nice to get a response from you and the information you suggested. I will certainly look at it later this evening. Thanks for the kind words, the help and the prayers. Have a blessed Christmas if we don't "chat" again before that! You've been an angel!
Karen

[KChideaway]

Sharon...
THanks to you too...again...it is nice to hear that there are others out there. AS for the Ditropan...I agree....it seems more harm than good.
Have a great night.
Karen

[ICNDonna]

It has only been a few days since you had surgery --- it may take a little time to feel better. If you continue to have pain, I do agree that you need to call your doctor for advice. Are you following an IC diet? That can be very important. You'll find the diet in the Patient Handbook (Rhonda gave you the link).

Sending warm healing thoughts,
Donna

[Deana]

Sharon and Karen,
I was thinking that ditropan was what caused retention for me and so did my new urologist. Just wondering what made you feel that way too? I'm just trying to understand what med's are good for me and what aren't being a newly diagnosed ICer.
Thanks, Deana

[SharonA]

Deana...The reason I suspected the Ditropan was that it also caused me to have retention. When I was first diagnosed with IC, the uro gave me samples to try. After I stopped taking it, the retention went away. It's sad that we have to be our own testing subjects, but that is the only way we will know if a med will work for us or not. It would be easier if the same meds worked for all of us. Sadly, that is not the case with IC.

Hope you are feeling better. :kissing:

[mott04]

I have been recently diagnosed with IC as well. They have done a cysto on me which gave me relief for a little while. I am now going through the DMSO treatments. I too have a small bladder, and have a lot of pain where my kidneys are. My doctor recently gave me a pain patch, which is helping me with my pain everyehere. I am very disfuntional when on it, but right now I am just glad not to feel that pain. It was not my urologist that gave me that, but my other doctor. I am also taking Elmiron, but have not really felt much difference. Someome said it takes a while. Hang in there!

[Cahyah]

If there is ONE THING that I can say it is do NOT feel bad for being down and out after surgery!!!!!! iT is so important to remember that you are HEALING and your body needs REST. My boyfriend has had to beat this into my brain because I am such a busy body....after my surgery the hospital put me on two weeks pelvic rest and i went nuts!!!! Wednesday is when the rest is "up" but I have still been doing things in the yard and helping him remodel hisl iving room; i just listen to my body and when i start having pain or burning i stop. Please please please allow yourself what every time YOUR body needs to rest and get better from the surgery. I knowt hey tol dme i would be fine in two days well for me it took like four to feel back to "normal" :)