Urethra pain?

[PickPink]

I had my first instillation on Tuesday. The catheter (they used the smallest pediatrician catheter) hurt, very bad, going in and coming out.. but I also have a narrow uretha so they always have hurt. After about 15 minutes my bladder pain did decrease significantly.. which was such an amazing feeling about 6 months of constant pain and pressure. However, my urethra was burning - mostly at the opening - and is continuing to hurt even today! So I felt like I couldn't even enjoy my *almost* pain-free bladder because my urethra has been burning. Now today, Thursday morning, it still burns a little but not as much.. however now I've had a small flare all morning! So my instillation only worked for a day and a half!

I guess my question is.. does anyone else have that problem? With the urethra pain, and the instillation wearing off after only a day or two? I suppose it could be because of my narrow urethra, and because it was my first - the effect didn't last as long. I just can't imagine doing that every week for 9 weeks! I hate having my poor tiny urethra burning!!

[jen74]

Hi
I had my first instill last Friday and also had extreme pain with the catheter going in and out. I also had the complication where I could not pee the stuff out as if swelled me up.

After the instill, for the first couple days I was in more pain than before doing the instill, then I got some pain relief for about 2 days and I was back in pain again. My doctor claims that you have to do the instills at least for six weeks to see if they are going to help. I myself personally believe that if after doing the instills three times max, if you dont feel like you are inproving a whole lot, then likely you are not going to benefit from them unless your decide to do the instills every couple days jusy to obtain some relief.

As far as the uretha pain, I had horrendous pain after having my first instill. And I had a reaction and could not even pee out the stuff and they had to cath it out again. Likely your urethra is inflammed as it is, and being cathed just irritated it more. You have to look at it like this, our urethra's are not meant to be manipulated and having things shoved in them. We were not designed for that. So anything out of the usual is going to upset that area in my opnion.
They can use this stuff called lydocaine gel before doing the instills and you could ask for a prescription for some to use with that burning, but it will only work if your urethra pain in on the outer urethra usually. I have more pain higher up in my urethra and the lidocaine basically cant reach there.

Maybe someone else will chime in and have more advice for you. Hope you get better soon. I am still trying to decide if I should have my second instill tomorrow or not.
Jen

[PickPink]

Thanks Jen! I'm glad to know I'm not the only one that experiences urethra pain during and after the instillation. My doctor said "This will make your urethra feel better too" so when it didn't, I was like "Uh.. is this just my narrow urethra being angry? or is this normal?" . I'm hoping that with each instillation the relief will last longer, and my urethra wont be burning - at least not as much!

I hope you feel better soon too! And if you do get the instillation tomorrow, let me know how it went. It'd be great if every time we go in for treatment it gets easier and easier for the both of us!

[jen74]

Hey pickpink,
Thanks for the reply. I still have not made up my mind if I want to do another instill tomorrow or not. I do have another appointment to see a new urogyne on Tuesday and hope he ie better than this one I am seeing. I really did not like my doctors attitude and her unwillingness to work with me. She basically told me that the instills is all she has to offer aside from the hydrodistention(which I wont do). and she said that if I donot do the instills, I will be in pain and basically told me not to bother calling them as she cant help me other than the instills. I thought that was an awful thing to say to your patient. I even tried to see if she would change the ingrediants in the instill or maybe leave one out, but she would not compromise. She said that she would cut the marcaine down. I also asked her if we could leave out the biocarb and she said no, that this is what works for people with IC.
So now I dont even know if I want to go back to her.
Jen

[waterflow]

I get two days of a little pain relief but mostly don't have to pee so much. It helps if they let some of the liquid slowly go out the cath when they slowly take it out. One thing that helped me was (I ahve read they do not do this anymore) I had the erurthra stretchedd twice. Was done in the hospital asleep but made putting the cath in much easier. I found just getting the lidocaine in the beginning of the eurthra will help to take the pain at least half way down.

[PickPink]

They actually don't remove the instillation with a cath.. after they inserted it, he told me to try and hold it in for at least an hour before "releasing it". So I got dressed and went on my merry way, and then urinated about an hour and 20 minutes later. I'm glad that I didn't have to wait there for an hour! I had to go to school! I work full time and go to college full time. I don't have time to wait for an hour at the doctors for some medicine to kick in!

And.. once upon a time.. when I was a very small child.. they had discussed doing a surgery on my urethra to enlarge it. But my mother only wanted them to do it if it HAD to be done.. and by the time I was 8 or 9 I had outgrown most of my Kidney issues and was just having UTI's, so they opting not to do it when I was young. Since then, no doctor has brought it up to me (I actually didn't even think of it until you just Mentioned it!). If my Urethra continues to give me problems with cath, so much where I don't even feel relived by the instillation - then I'll ask my doctor about that option. Thanks Waterflow for suggesting it!!

[waterflow]

You're welcome. Glad I could help. I hold my instills in too. I meant that when they take the cath out there is a little bit left in the cath because of the bladder pressure. If they remove the cath slowly what is left in it will run down the eurethra and help to numb it more.

[PickPink]

I hold my instills in too. I meant that when they take the cath out there is a little bit left in the cath because of the bladder pressure. If they remove the cath slowly what is left in it will run down the eurethra and help to numb it more.

Ooh.. I didn't even notice how quickly or slowly they took it out. It just hurt so much the entire time that I didn't even know it was out until they said "okay.. you can get up now" and I was just wanted to say "BUT ISN"T IT STILL IN THERE?!" because it was burning so much it felt like it was still there I hate catheters

Anyway, so on Tuesday I get my second instillation, and I'll ask them to remove it slowly. Thanks for the suggestion!

[bunnykinb]

Every time I get an instill whether it be the current DMSO, or the past heparin or Elmiron, I still have alot of pain during and after being cathed. The burning can last me for days. I didn't have any infections either.