HELP needed...calling all oldies and newbies.

[JerseyJodi1]

I am putting this message out to everyone. I was diagnosed with a mild form of IC on 11/11. I have yet to see the doc and start treatment as she wanted to wait four weeks. She gave me pyridium to take for 10 days after the hydro/cystoscopy. I was feeling fairly good taking that. Now, that I have no more pills...the same feeling is back. I cannot explain it, it's not pain, i don't go to the bathroom a lot maybe 7-9 times a day. It just feels like something is always there in the bottom of the urethra....it's so weird! I have spoken with a number of people on here and it just seems like no one has my symptoms as everyone is different.

Do you think I should ask to see the doc sooner? It just makes me crazy cause it's SO ANNOYING and does not go away. The urelle does not seem to work either. In fact, I feel like it just keeps the symptoms where they are, not a real relief.

Any ideas? Does anyone have these symptoms...what treatments have worked for you.

Thanks!

[waterflow]

I can't help you out with the symptom thing because I don't have it. Maybe call your doctor now and not wait until the next appointment. They might give you more of the prydium until you get there to see them or they might want you to come in sooner. I did the waiting the weeks out thing in the beginning too and found sometimes if I called and said how bad I felt I got in sooner. I know with Thanksgiving being now the doc's office might be closed. I know mine is but they have the answering service.

[nottoc4]

My Urethra used to twitch and drive me crazy. I found through using the IC diet and trial and error that the dyes in medications do that to me!! I have no problems with inks which are on capsules but coated pills or colored pills are off my plate now. I get white pills and have not been having that problem. I also used to feel sore up in there as if I had been having a lot of sex,when I wasn't. That is from the dyes too.Check out your meds and if some of them have dyes,try eliminating them for a few days and see if anything changes. Good luck. Jo

[krisillis]

Hi JerseyJodi,

I would see if you can get into see your dr sooner. I like you constantly feel like I have to go and am VERY aware of my urethra. The only suggestion I can give you right now for relief with out pyridium is tylenol or ibuprophen. You can try putting a pillow under your legs when you go to bed at night that may give you some relief and try a warm bath or a heating pad or an ice pack down there. Heat works well for some people and ice works well for others you need to experiment to find out what works well for you. Hang in there I hope that you can see your Dr. really soon.

Christine

[ICNDonna]

I agree that you should be calling your doctor.

Donna

[tangerine3]

I am putting this message out to everyone. I was diagnosed with a mild form of IC on 11/11. I have yet to see the doc and start treatment as she wanted to wait four weeks. She gave me pyridium to take for 10 days after the hydro/cystoscopy. I was feeling fairly good taking that. Now, that I have no more pills...the same feeling is back. I cannot explain it, it's not pain, i don't go to the bathroom a lot maybe 7-9 times a day. It just feels like something is always there in the bottom of the urethra....it's so weird! I have spoken with a number of people on here and it just seems like no one has my symptoms as everyone is different.

Do you think I should ask to see the doc sooner? It just makes me crazy cause it's SO ANNOYING and does not go away. The urelle does not seem to work either. In fact, I feel like it just keeps the symptoms where they are, not a real relief.

Any ideas? Does anyone have these symptoms...what treatments have worked for you.

Thanks!

Is it a dry feeling? I had that did not know what caused it. after my hydro/dist i didn't see the dr. for 4 weeks either. Then started home instills and felt real good until this monday. I think things come and go. At least call them and ask to speak with the nurse, tell her your symptoms and she probably will ease your mind and that should help.

[snowgirl]

dont' wait call and get apptl sooner . Explain your symptoms. If not then asked to be put on cancellation list if need be but I hope not. Vicky

[pj77]

You can buy the over the counter pyridium to use until you can get into see your doctor. They sell it everywhere. :angel:

Just make sure you stop taking it in time, a day or two before in case you have a test to do that it might interfere with the results.

I would try to get in sooner also, tell them you are in pain and need an earlier appointment. It stinks with the IC how long it takes to get in to doctors, to get diagnosed, to find a medicine that works. But be pushy, polite but pushy. It pays to be pushy with IC, otherwise they keep you waiting forever, I'm not a pushy person normally, by nature , but I had to learn to be more aggressive when I got IC.

Good luck to you, and there will be better days ahead. Hang in there!:smile tee

[tangerine3]

it's called AZO Standard and I think around 95mg. Rx Pyridium is stronger but it might help until you can get there.

[Briza]

Yes, if the Pyridium was helping you, til you can see your dr Pyridium IS available OTC under the names URistat or AZO Standard. Just depends on what the store carries. Available at any drugstore, pharmacy, Walmart and most large supermarkets....near the yeast creams and condoms and such.
But I do hope you have contacted your dr by now...I think it a travesty that someone who just had SURGERY, a cysto/hydro, especially if it was your first one, should have to wait 4 weeks for a follow-up...
Anyway, I know Pyridium is not intended for longterm use, but I was prescribed it by my uro for round the clock use for a month following my hydro. It does work exceptionally well for me. Now I only take it occasionally as needed. Since the Urelle doesn't seem to be helping, it is supposed to be safer for long term use, you might want to ask your dr about Prosed DS....it works similarly to Pyridium and Urelle, and can be taken longterm. But if it were me and I couldn't get anything from my dr at this point, I would be at the store buying some Uristat or AZO Standard. If you don't have pain meds, then I know I have taken OTC extra strength Tylenol with some success. I am one who can tolerate Advil and Alleve, and that works great for inflammation, and my pharmacist told me it was ok to take at the same time as advil or alleve.
You can also buy a UTI test kit at most any pharmacy, walmart, etc. It is not uncommon to get a UTI after a cysto/hydro....so that is something you could also do to see if there might be a possiblity of infection, and surely THAT would get your uro's attention, I would hope.
Best wishes, I hope you see or talk to your Dr soon and that your symptoms are under control very soon.Take care, Bri

PS...cold packs placed between your legs should give some relief
Also, as PJ mentioned, if your urine is going to be tested for infection..best not to take the pyridium or Urelle right before the test...it usually takes a few hours to get out of your system