New Here - Not New To IC

[libby loo]

Hi Ya'll -
My name is Libby. I'm a married mother of 3 living in Ohio.

I got my dx about 5 years ago. I've had bladder issues as long as I can remember and about a year before my dx I had flare after flare. I was treated by my family doc for uti's with no proof so many times. About a month before dx I started having blood in my urine and passing what I call "gel cap" clots.

Lucky for me my obgyn knew what was happing to me when I went in for my yearly check up. He was partnered with a uro in my town and refered me to him. I had a distention done in the hospital and the rest is history so to speak lol.

I went on elmiron but couldn't tolerate the side effects so I went off. I used pyridum for flares etc. Things were fairly decent and I didn't complain about it.

Fast forward to now - about 3 weeks ago I had the worse flare since I had been dx. I thought I was dying. Urgency, frequnecy, pain. IT was horrible. I made an appt with my obgyn. He treats ic now. He came to the conclusion that my ic was in full force. He gave me rx for elmiron, vistaril, ditropan xl, urocit-k and zelnorm. He also ordered some type of instills but I'm not sure what my bladder cocktail will contain. I have to get them 2x a week for 3 weeks and then 1x for 6. Lets just say I am not happy about all this.

I started the Elmitron and vistaril. I couldn't afford the others right now. I haven't seen much improvment yet. I went for my 1st instill yesterday. After she put the cath in I started to feel like I was going to faint and throw up. She took it out before she did the meds. I threw up and then she wouldn't do it since I was sick. I know I got that way because of the pain from the cath. It felt like razors and now when I pee it still feels that way.

I'm schd. for my next try tomorrow. I'm scared to death that this will happen again. Is there anything I can do to help with the cath pain. I need these meds and have to get it done tomorrow. I just can't stand the pain from the cath at all.

Thanks if you got this far. I wrote a book lol

It's nice to have some place to vent where people understand.

Update -
I went in Friday for my instill. They injected lidocain and waited a min or two then put the cath in. I couldn't feel the cath until it was in my bladder and it was over in less then a min. I don't know why they wouldn't give the lidocain all the time, I mean who likes to be cathed lol :bonk:

[TabithaS.]

my mother felt the same way when she was cathed so she told the doc. and they changes to a childrens cath that really helps her when she has to be cathed, every day, so if you havent tryed that i suggest next time you tell them to use a pediatric cath. i hope this helps. TabithaS.

[vm]

If they aren't already doing it - you might ask them to apply some lidocaine to numb up the urethral area before inserting the catheter.

I'm glad you found the ICN - I think you will find it to be a great place to get support and lots of information about this condition. :welcome:

[Annie2]

Hi, Libby! From a fellow Buckeye, :welcome: to the ICN!

I am so sorry you had problems with the catheter. You have already been given some good suggestions. I found insisting on lidocaine gel being used to numb my urethra helps when I have required a cath. If you can concentrate on breathing deeply and consciously relaxing your pelvic muscles, that can help, too.

I understand you have been dxed for several years now, but are you following the IC diet? If not, I would recommend you put yourself on it right away. Many of us have found following the diet is the best self-help tool we have. You can find information on the diet in the Patient Handbook at http://www.ic-network.com/handbook/

Glad you found us! We are all here to help one another. You will find this site full of valuable information and very caring and supportive people.

[Traven]

hi libby and welcome!