Urethral Pain from Instills

[rosesitty]

Do many of you who do rescue instills have urethral pain and irritation immediately following? I've been getting a treatment about once a month - I can't imagine several times a day! You'd think the urethral trauma would outweight the benefits. Any input? Thanks everyone!
Rose

[ICNDonna]

I did instills twice daily for a while and after a while I got so used to it that it didn't bother at all.

Donna

[Tina K]

I have been getting instills (supposed to go twice a week) wind up doing them about once a week because I don't like going, I get horrible discomfort afterwards every time I go to the bathroom and the next day all the muscles and nerves get so aggrivated I am in horrible pain. Then to top it all off the instill only works for about two to three hours. I think it is different for all of us though. You probably do get used to them over time though. I know they help a lot of people on the board.
I did tell the doctor's asst. that I am very uncomfortable afterward and she asked if I had any lidocaine and I said no would that help, she said yes. That was it???? You think she could offer to get me some or tell me how I can get it but no. Just that will help you..... I hate this doctor.

Good luck with your decision to use these or not.
Tina

[chris0410]

I acutally had my first instill last week. I was dreading it because of the many things I've heard, but it actually wasn't as bad as I thought. I was very uncomfortable for a few hours after, but then I started to feel minor relief. I did have urethral pain for about a day.

Lidocaine is a gel that numbs the area where it is put on. I think a lot of doc's use it before they insert a catheter as well. My first instill was only a lidocaine solution (I guess to see how well I would tolerate it). He will be using Heparin on Tuesday when I see him again. I think what helped me is trying to relax & just deep breathing while I was in the doctor's office.

I hope you guys have better luck with instills in the future :grouphug:

[Sarojini]

I do instills at home 3x a week; if I follow the schedule to the letter, the urethral irritation goes away and it doesn't bother me at all. However, if for some reason I need to go longer between instills (I've forgotten to fill my prescriptions for an ingredient, I've forgotten my supplies while traveling, etc), then the first instill after the "break" is somewhat painful. I think the urethra gets used to it after a while.

I hope you find the same thing... :grouphug:

[kadi]

The red rubber caths burn, so I get the clear latex free ones now. For me, too large or too small a catheter causes irritation (12 Fr. is right for me).

[rosesitty]

Thanks everyone for your input. I was averaging instills once a month - and then during this two month flare, I've gone 9 times - so about once a week. I can hold the instill for 5-6 hours and have relief until I void the med and then suffer from urethral spasming and discomfort for a day plus. I appreciate all of you taking the time to talk about how it works for you.

[hiphuray4peas]

I saw my uro yesterday because I cath 3x's daily for instills. I irritated my urethra so badly that I was urinating blood clots.
His response: IC sometimes doesn't just effect your bladder, sometimes it spreads to ur urethra... so a cath can be extremely painful.
My new solution to that issue... a lidocaine urethral soppository which although initially is REALLY uncomfortable makes cathing a zillion times easier. While also using the smallest adult size (10) lo-fric caths.
(However they're both a special order thing if you learn to do it at home....)
Things are getting better just from just treating my urethra in addition to my bladder, and make the instills a lot less painful.

[Dixiefireball]

i do my treatments of heparin and marcaine up to four times a day i was doing them three times a day up until about four or five months ago when i went up one. When i had that burning your talking about down stairs it was due to the cath i was using. after i changed to the non latex cath child size 14 that stopped. I also don't even need to put any ky jelly on these new caths they slide in without any problems. you may want to ask your dr. about lidocane jelly if your already using the latex free caths. you could put some up in you wait for about five to ten mins so that area will be getting numb before you do a treatment.
best wishes hope you feel better soon.
I also pray they help you as much as they did me in the pass. if you want to chat please send me a P.M.
Rhonda

[chris0410]

I think a lot of pain & uncomfortableness may come from who is doing the instill. I've had 2 instills so far, & the first time my docotor did it. I was fine. No problems with urethral pain. But yesterday a nurse did it, & the catheter moved around so much, & it was so uncomfortable. I couldn't sit, stand or walk when I left the office. I had to drive home almost standing just to keep my rear off the seat. I'm glad there will be another nurse doing it when I go back Thursday. I think sometimes may not be as comfortable as others. The key is still to try to relax as much as possible & take deep breaths. (That may have been part of my problem yesterday)

[rportteus]

I was diagnosed pretty quickly after beginning symptoms of IC. I have been struggling with IC since August of 2005 and have had short periods of relative comfort since starting my "diet" in October. I went in for my first rescue instillation on Friday and after I voided the solution, I got a really bad flare-up that evening which continued into Saturday (although not as bad). Is this normal with this treatment? The nurse told me if one treatment doesn't help my flare-up, I will have to come in for 9 of them. If this one hurt this bad, will all of them? I am having a hard time dealing with chronic pain. I am 26 years old and never really been sick, so this has been an adjustment. Anyone have any experience with this?

[Tina K]

rportteus - I myself have problems with the instills, once I void the solution I get a flare that lasts at least til the next day - I told my doctor after trying 5 of them that I felt they were disrupting everything more than helping, he agreed and said that I probably have more trouble with the muscles down there than my bladder. I totally agree because every time I get an exam or instill or a colonoscopy or PT I am in pain for at least a couple days. The muscles seem to go into spasm which winds up hurting the most. Burning everywhere.
Give them a couple more tries but if they aren't helping let the doctor know. A couple hours relief isn't worth a couple days of pain.

[rportteus]

Thank you. It helps to know that someone else responds this way!!!

[rosesitty]

I have had very good luck with the instills until 2 months ago (for 2 1/2 years). They were lasting for a month, and then only for a week. I went into a super duper flare on top of a flare, and now they're not helping at all. I think my pelvic floor and urethra are so spasmed that the instill isn't helping at all. Even when they were working, I would have some discomfort the following day from the cathing. Sorry you aren't having any luck with them. Perhaps you could stop and restart when your pelvic muscles quiet down.

[rportteus]

I have decided to try a new doctor since mine is not really giving me any guidance as to treatments. I am going to talk to him about all of the great suggestions you have given me.

[hiphuray4peas]

I was told that the longer you continue instillations the more benifits you can recieve. When I first started I only got 20 min relief... now I get 4-5 hours. It takes work which and patience totally sucks.
I find that I flare up after voiding because the solution is stingy on the outside....
this may not be the case with you but....
I use a water bottle to squirt warm water down there, it helps the stingyness go away and helps me relax a little more.
Also, cuz I do them at home I find that taking uristat and a bath before hand helps a lot too.

[ads]

Bladder instills never helped me and only made me worse. Yes, the urethral pain and the instill meds not helping made me stop and go onto the next treatment. I did give each instillation process a fair shot and time period tough.

ads


Do many of you who do rescue instills have urethral pain and irritation immediately following? I've been getting a treatment about once a month - I can't imagine several times a day! You'd think the urethral trauma would outweight the benefits. Any input? Thanks everyone!
Rose

[jpwilkinson]

It is very interesting reading all the various reactions to instills. I have been having them in my uro's office by a nurse. She is very good. I went to the office on Tuesday and she showed me how to do the cath myself. I did it several times just to practice. The next day I was in severe pain and burning badly. I am better today but am now hesitant to cath myself again. My uro wants me to use marcaine only. I am going to try it tomorrow. Wish me luck. By the way, this is my first post.

[dminton]

I found a position that works better than others; I'm squatting in a big easy chair with a towel on it, leaning back but still upright, and using a mirror to see. I found out the hard way that semi-reclining is painful and when I reach the inner sphincter, I feel a blockage and it is very painful. My uro's nurse taught me this. I hope it continues to work. Everyone is different, someone else might do better lying down entirely, for example.

[emilyrose197377]

:
It is very interesting reading all the various reactions to instills. I have been having them in my uro's office by a nurse. She is very good. I went to the office on Tuesday and she showed me how to do the cath myself. I did it several times just to practice. The next day I was in severe pain and burning badly. I am better today but am now hesitant to cath myself again. My uro wants me to use marcaine only. I am going to try it tomorrow. Wish me luck. By the way, this is my first post.

:welcome: to the ICN.

[becca ann]

I have had two "rescue" treatments they really do not seem to work well for me. My gyno uses ped caths and I still have severe uretheral burning after. Hope you have luck with your problems.