Had my first instill -OUCH!!

[Charisse]

I think I've been traumatized. The cathether insertion was SO painful I was yelling out loud. It was so bad compared to the pain of the potassium instill that my GYN was not really sure it was positive for IC. He put in Heparin afterwards and said I should feel much better within a couple of hours if it was IC. Well I was so freaked out -my entire body and butt muscles were shaking during the whole procedure and I had taken Ativan to relax beforehand too. I was still in pain when I got home and it's just gotten worse over the past several hours. At midnight I started having severe burning on urination and had to take Pyridium which has helped. I've never had the burning. I am feeling worse today! Oh I just want to cry. I have 3 appts next week with the NP for Heparin instills which I'm going to cancel. THe dr is on vacation but I will talk to him the following week about trying Elmiron and/or Atarax. He claimed hair loss is a side effect that the FDA made them list due to it acting similar to Heparin and that I can avoid GI upset by breaking the capsule. I'm so mad I did this procedure yesterday. I feel worse today!! I will never ever have another catheter unless I'm put to sleep first. He used the smallest one and put some lubrication on it beforehand. I had a catheter years ago with no pain so I don't know if I'm more sensitive now or what. Charisse

[soccermom32]

Hi!
Okay, it sounds to me like your urethra was in a spasm when you went in. Possibly from pelvic floor dysfunction I would think. The person who did your instill probably wasn't respecting your delicate urethra in a spasm. (My urethra spasms too).

I love my uro-gyn, but he did my first instill and I was in SO MUCH PAIN. The pain in my urethra lasted over 15 hours. I swore too I'd never go back. I did express my concern at my next appt. From then on, his nurse did my instills. She ALWAYS uses lidocaine in my urethra first and lets it sit there for at least 5 minutes to numb. She uses a tiny pediatric catheder (I know it hurts when you in a spasm though) but she is really really careful not to move her hand at all when its in. If she wiggles, I scream b/c it hits the sides of my urethra. She knows my urethra and most of my instills are pain free. I never had an experience like I did the first time - hopefully you don't either!!

I encourage you to keep going for your instills. They helped me tremendously. Most days, I am completely symptom free. Today I'm in a little flare, not sure why but I wish I could do my instill at home!! Express your concern and make sure they numb you first and emphasize they cannot move their hand at all b/c it hurts you.

Good luck!

[jen74]

I think it really depends who is doing it. I had a nurse do one that hurt quite a bit, but then had another nurse a different time and it did not hurt at all. And now I do them at home, actually my husband does it for me and he is really good, it does not hurt much. I am telling you, it depends on who is doing it.
I would give up yet. I would try it agian. But this time tell the doctor your concerns and how much pain you had with the catheter. Maybe you could also ask that he use a latex free catheter. I noticed more pain with the latex catheters. I now only use silicone and it is way better.
Jen

[dancemomof2]

Sorry you had a bad instill, I hate being cathed it is such a misery. Hope you feel better and this all settles down soon.

[L. Thomas]

[tigger_gal]

oh no how awful for you.. I took Elmiron for a long time, until I couldn't deal with the headaches. It took about 8 months for it to work when I did take it. I had a lot of hair loss but I am the only one that noticed it. Your doctor can put you on the Elmiron and hydroxizine at the same time, also some gails take elavil that helps them.
If you decided to take the next treatments tell them how much ir burned you and ask to dilute it more and see what they say and if they can.
keep in touch.

[Charisse]

Thanks everyone. Soccermom can I ask what kind of instills you get? I believe my dr uses Heparin only. I haven't even asked about Elmiron instills. I figure I will try and take it orally first. I was ready just to give up but after reading these posts I have decided to at least talk to the NP before flat out refusing another catheter. Is there any chance that the Heparin could irritate my bladder and urethra more? I feel like I have PTSD after that experience yesterday. Charisse

[kadi]

Hi Charisse,
You might also ask for a non-latex catheter. Even though I'm not allergic to latex, my bladder & urethra really don't like it. Oddly, I found that a medium size catheter (12Fr) was more comfortable than the bigger ones (obvious reasons) & the smaller ones (8Fr=too much movement in the urethra & took too long to put the solution in=longer time with catheter). So switching catheters helped a lot. You might also ask about diluting the solution with sterile water. I found that if my heparin instillations did not have 30cc of sterile water, the volume was so low I had trouble voiding the solution & it burned. I also found that Marcaine instilled with the heparin & sodium bicarbonate worked better than Lidocaine for me. The relief lasted longer & not so much irritative burning. Anyhow, a few things to talk with your doctor about.

Hope you find some relief soon--

[Charisse]

This is an old post but I wanted to give an update that I did try another instill yesterday. The nurse did it this time and she used a red rubber catheter that is more flexible. I'm not sure if that helped or if it was all the lidocaine she used. Also she decided not to use Betadine this time since I've had burning problems from that in the past. It was a much better experience this time. I had a bit more pain in my urethra last night and today and not sure if this is normal or not. I'm scheduled to do 3 instills per week. The nurse can't always do them so let's pray that the GYN can do them. I only have burning the first few times I pee after an instill otherwise burning is not a problem for me. It's mainly crampy bladder pain and some mild frequency/urgency.

[waterflow]

Glad to hear it went much better. I had the plastic cath used one and that was much more painful then the rubber kind. I only have had it done once a week. Even in the beginning.

[ICNDonna]

I'm glad this time went better for you.

Donna

[L. Thomas]

:woohoo: :woohoo: :woohoo:

Glad it was better this time.