Help-Elmiron Instill feels awful!!!

[aleet7]

I just had my first instill 2 hours ago and I feel awful! Every drop of urine feels like hydrochloric acid! I can't sit on my bottom because my uretha is on fire!!! I took a bath and it didn't help! I never want to have it done again!!!!!

Teela

ps. uro refused to give me pain meds!!!!!! I told him that I'm in a flare and i need to go out of town for my dad's funeral in two days. I called his office and he and his nurse are gone! Help!!!!!!:help:

[gopher7895]

Was there more than Elmiron in your instill? I had one today too and mine contained Elmiron, heparin, lidocaine and sodium bicarb. I've been doing them for several months. The first couple times I pee afterwards it burns but not as bad as you describe. My urethra always feels irritated until the next day. Hopefully you'll feel better tomorrow. If not, call your doctor because you shouldn't be in that much pain. If they don't want to give you pain meds, you could ask for pyridium, urelle or prosed. They should numb your urinary tract a bit.

[aleet7]

Was there more than Elmiron in your instill? I had one today too and mine contained Elmiron, heparin, lidocaine and sodium bicarb. I've been doing them for several months. The first couple times I pee afterwards it burns but not as bad as you describe. My urethra always feels irritated until the next day. Hopefully you'll feel better tomorrow. If not, call your doctor because you shouldn't be in that much pain. If they don't want to give you pain meds, you could ask for pyridium, urelle or prosed. They should numb your urinary tract a bit.

I called my doc and he and his nurse were gone from the office! I don't believe they mixed anything but Elmiron in my instill. The nurse asked for my pills and told me that she was going to mix it with sterile water that I had to hold for at least 15 minutes. The mixture was very whitish. I thought that she would use lidocaine to numb me but the catheter hurt worst than anything I've ever felt! The instill felt way worse than when i had my cysto/hydro! I came home and sat in the bath tub and cried! My doc told me to buy uristat OTC but Meijers did not carry it. The pharmacist told me to buy AZo which was the same as Pyridium. I took that but 5 hours later my urine still burns and my bottom is too sore to sit flat on! I never want to go through this again! I called and begged for Vicodin and they just called it in! I'm going 4 hours away to help my mom with funeral arrangements for my dad. The last thing I need is to be in a flare or experiencing burning and aching while at my dad's funeral!
Teela

[ddscrazy]

Wow I thought I was he only one!!I had my first and last instill 3weeks ago and am still in the worse pain!!It had Elmiron.lidocaine,sodium bicarbonate,sterile water.They want me to come back and try again with Muricaine instead of lido,neeless to say I cancelled,don't know if I will ever feel good again.Try a baking soda bath, it will help with the burning.

How long have you been on the ELMIRON?I have only been on it about a month 400 a day too.

So sorry you are going through this right now,after your Dads passing,Stress could be a factor too.Let us know how you are doing!!

Good Luck with everthing
Diana

[Briza]

One thing that might help with any urethral, vaginal, and external burning sensations that you are feeling is lidocaine gel. Requires a prescription, but can easily be called in to the pharmacy. It gives good numbing relief, temporary relief, but can be very very soothing and calming to the burning sensation when sitting and for urethra and vaginal burning. Also cold packs of frozen peas or any other frozen veggie or ANYTHING cold you have on hand. I've used a cold can of soda between my legs when in a pinch. Ice packs are good, too, of course, but sometimes they are just TOO cold.

[gopher7895]

Teela, I'm so sorry you're going thru this especially hearing about your dad's death and knowing how hard that's got to be. I'm glad they called in Vicodin. That will help. The first time I ever had a catheter the nurse in the urologist's office did it without lidocaine. The pain was awful so I can relate.

[L. Thomas]

Instills have been successful for me. I am just about out of my heparin for the instills My urogyne has substituted Elmiron for the heparin. I have never had any pain from the heparin instills so when I switch to Elmiron if I have pain it will totally be from the Elmiron.

I will have to admit I am more than a little apprehensive. I sure wish Baxter would get this heparin issue resolved.

[aleet7]

Hi Diana,
I'm feeling a little better today as far as the burning goes. My doc called in some pyridium this morning and wants me to take it for a month. I've been on Elmiron for 2 months now and so far the only results are hair loss.
I know for sure that the nurse did not use lidocaine. She warned me that it was going to hurt really bad going in and coming out! I was really angry that she didn't numb me. I was already in a flare and to have the instill burn me like that was a nightmare! I came home and sat in the tub and cried for an hour! Every time I got the urge the burn got worse! I really never want another instill if it has to feel like that.
I wonder if some people do well with instills and some don't?
Best Wishes,
Teela

[aleet7]

L. you've had home instillations since 2004? Wow..and they don't hurt? I think that in my post I said more about the catheter pain but really that was the best part of it. When I peed the first time was when I started having bladder spasms and the Elmiron felt like acid coming out! Everytime I urinated it felt like pure acid! This went on for hours. I had the instill at 1pm and I was able to sit on my bottom around 8 pm! I bet it works great for some. I don't think I could handle another.
I hope the Elmiron works good for you.
Teela

[L. Thomas]

I have never been uncomfortable from an instill. I know that they do not work for everyone and some feel pain just as you do.

I haven't started the Elmiron instills but if I have problems I know my urogyne will work with me. Like I said, if I have problems it will definately be the Elmiron.

It sounds like your cocktail must have had something in addtion to the usual ingredients. I have never read or heard of a nurse telling anyone the instill was going to hurt going in and coming out.

[dg2901]

As long as you dont suffer from high blood pressure, or are on a salt restricted diet, you could try a tsp of baking soda mixed into at least 8oz of water to help with the burning. Lots of people swear by this.

Feel better soon!
Diana