Newbie

[crabby1]

[FONT=Comic Sans MS]Hi everyone! I am a newbie to the boards, so bare with me. I am looking for answers to some of my problems. I had an, what I called at the time, episode. It happened this summer and I thought it was just a UTI. It turned out there was no infection, but the pain was horrible. I couldn't sleep, sit, stand, nothing helped. A warm bath helped a little. I also was running to the bathroom every 30 minutes. At least twice I didn't make it. I have always had weak pelvic floor muscles, since I was young.
The dr gave me pyridum and all was better as far as the pain in a few days.
I dismissed it as an error in the lab as far as the infection and figured I DID have a UTI.
After I had gone back to school in the fall and began teaching at a new middle school I had another episode. Same symptoms. Not being able to go to the bathroom when you really and truly HAVE to was horrible. So, I wore a maxi pad and of course didn't make it to the bathroom at least once. It was the middle of the day and I couldn't go home. After that episode, I went to a uriologist, had a cystoscope and he told me I had cystitis of the bladder. He doesn't want to diagnosis IC until I have had more episodes, what I see ICers call, flare ups. Its been two months since the last flare up and even then the pyridum did work. I guess I am in the infant stages of this whole thing and I need to know some of the REAL symptoms you are all having.
I am a cancer survivor as well. :woohoo: I had thryoid cancer, papillary and follicular, and had 190 mi of RAI. I think that is where the cystitisis came from. Of course, to the clinical mind, nothing is related, so the drs immediatley dismissed that! Anyway, I think I am going through early menopause as well, I am only 40. :biglaugh:
Any advice, related stories, etc., would help.
Thanks,Paula

[kadi]

Hi Paula,
I also am a teacher--this is my 14th year teaching, my second year with IC. I want you to know it can get better! Last year I missed I think about 28 days of school, and just dragged myself through the rest. Have no idea how I did it. This year, I've only missed 2 days of school so far (and only 1 was IC related) and feel pretty good most of the time. I'm not 100% yet, but am doing a lot better & still hope to get better yet!

I'm not a doctor, but there is something called radiation cystitis, might be worth having a medical consultation about. Is there a good research hospital accessible to you that might have a urology specialist?

Anyhow, I understand very well how hard it is to teach when you don't feel good. Hang in there... You might want to check out the diet pages in the patient handbook section of this website to see if that helps (it usually takes a couple of weeks to see if it works).

Wishing you better days soon! Please feel free to PM me if you need support or have questions about teaching with IC...

Sending a hug,
Kadi

[ICNDonna]

I have a friend who has radiation cystitis --- she has very much the same symptoms as I have with IC. I also think that's something you might ask about.

Sending healing thoughts,
Donna

[Katrina]

:welcome: to the ICN!!!!!!!!!
I praise you for being a surviver of Cancer. I am very glad you found this site. We can help you through a lot. I highly recommend you look at the handbook Kadi mentioned!

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

My real symptoms....a constant sensation of having to urinate, some minor frequency, minor pain, and some burning occassionaly....that is what they are now atleast. I have had this so long I have been through times where my symptoms were much worse and I did have times of urgency quite a lot for a while. I gess treating me with antispasmodics as well as other things has helped that.

Please let us know if we can help you anymore.

[Dixiefireball]

:hi: and :welcome: to the icn family I'm sorry I don't have answer for you, but wanted to say I admire you for being a teacher I admire all the teacher's exp. with I.C
I also admire you for beating Cancer :grouphug:
Please keep us updated on how you are.
we do care.
sending you hugs and prayers
Rhonda

[VickiB]

Hi Paula, and welcome!

That's got to be a tough situation, -being a teacher and having your bladder throwing a fit! I don't envy you there!

When my IC symptoms first started showing up, it was like yours, in episodes spaced months apart. Eventually the frequency of the flares increased and the time I felt fine in between grew to be shorter and shorter. I was finally diagnosed this spring, started meds, learned about the diet, and feel better now than I've felt in twenty-some years! -Almost normal!

If your Uro wants to wait to see if your episodes continue, and you're okay with that, I'd still suggest checking out the diet. And if or when your bladder begins to act up, a voiding diary may be of use to give your Uro a better idea of what's going on.

Hugs,
Vicki

[Sarojini]

Just wanted to extend a belated :welcome: to the ICN!

I'm sorry you're going through all of this -- your symptoms sound very much like IC; but I agree with the others that you must ask about radiation cystitis. If you've had radioactive iodine treatments, the excess is excreted through your bladder and the radiation can cause a cystitis that closely mimics IC.

However, regardless, please pursue an accurate diagnosis -- that way you can begin a treatment plan that can help reduce the frequency of the "episodes" you've been having.

I hope you feel better very soon! :grouphug: