Just started Cystistat

[loro]

Hi ladies it I just started cystistat instills yesterday the doc did not want to use lidocane and he would not prescribe me pain killers Needless to say I was up all night in pain from the cath. my urethra is burning like never before. I am not sure what size the cath is/ Should I order infant caths? Do any of you have any stratigies you can sugest to me to help me restabilze during this?I have to go once a week for the first 6 weeks so I have 5 weeks left. Then if they notice it working I order more and I am suposed to do it once a month.I can't be trying to get back just to my normal pain.

[marsi4]

I went for a heparin lidocaine instill. Just want to say that the lidocaine did not numb my bladder at all to help with the pain and I did not feel any pain at all from the catheter. I was terrified and thougt it would hurt like the cystoscope does during a cystoscopy exam and was terrified. I was so surprised at how smooth it was. I have no burning whatsoever or pain in my urethra from the cath and my nurse said she had used a 14 inch, 8 french. It was 14 inches long and 8 inches in diameter. Sometimes it's not from the cath that we have pain but possibly from the inexperience of the individual doing it. Were you given the instill from someone who has a lot of experience in bladder instillations or a student?

Marsi4

[sweetangel2080]

I hope next time you are given lidocaine and wait a few minutes before the cath is put in so that the lidocaine can work.
I have had a full course of cystistat and they worked really well for me - so much so that some days I only visited the loo 6 times! Unfortunately, the catheter caused me too many UTIs so i had to stop. Even after the UTIs, I could still feel less pressure and irritation.

[CaliAnn]

I use Cystistat as well and always have lidocaine for the cathing. I would insist if my doctor didn't - in fact, anytime I'm cathed I get lidocain, I've never had to ask.
I am at the point where I only need instills once a year.
Good luck

[loro]

Thenks ladies I will talk it over with him. The nurse did my instill at my uros office she did not seem to be very caring about the pain.They haven't even heard of Cystisatat there so I am their ginny pig. I drink buchu tea and that is a natural herb used for a UTI I had two cups after my instill so it helped flush me out. Another thing I noticed I drank a gallon and a half of water that day I normally drink a half gallon. Do you all drink more water after an instill? I was so thirsty and felt the need to flush my system with water. I also experienced a bit of constipation that I don't feel was food related being I have had my bowels normal for sometime now.Today I am having some bad abdominal cramping and the burning is lessing back to my normal level. I am thinking I may ask them if they have smaller cath and if not I will order some.
Thanks everyone for your imput this is kinda scary for me.

[CaliAnn]

Hi Loro - the only after affects I've had from Cystisatat have been related to the cathing, nothing from the actual instill. One of the reasons I opted for Cystisatat is because it is cultured from natural substance found in our saliva. Because of that, there are a lot less side effects from it than any other instill used that I've heard of - in fact, most people actually find it soothing. Like you I'm in the US and as you know Cystisatat is still not FDA approved, but because it is so well tolerated, is not absored in the blood stream I've not had any uro's afraid to try it (I've used several different ones in the past few years).
I hope you get as much benefit and releif from it as I did. :)

[loro]

Thanks CaliAnn,
I hope so too ;D

[loro]

Well I went for my 2nd instill today and they used a rubber tip and lidocane and I had no pain from the cath whew :) I hope it works for me.

[CaliAnn]

Glad to hear they are using lidocane and this time there was no pain! :woohoo:

[loro]

:D Thanks CaliAnn,
I hope I can hold it longer and it works for me. I wonder if it takes longer then 6 instills for anyone to know. I have 4 left I am going to try to hold it in loger then the half hour they told me to hold for. 200 dollar pee I think I should try and hold it longer. I need this to work cause I need to get some relief and some quality sleep. Yesterday I went to get car insurance and I almost passed out yikes.

[CaliAnn]

Hi Loro, I think I started noticing a difference on my 4th instill - less pain. My main symptoms were - in order of severity: pain, frequency, urgency, retention.
After talking to Bioniche I decided to keep going after the first 6 instills (did 1x/wk for 4 weeks, then 1x/month for 2 months) so after I completed the 1x/month for 2 months - I went an additional 1x/month for 2 more months. By this point I was doing pretty good - I also did PFD and did follow IC diet. After that, I probably went 6 months before doing instills again, but only 1x/wk for 4 weeks and that is what I do now - 1x/wk for 4 weeks about once a year. I no longer watch what I eat and no more severe pain. My bladder does flare up occassionally and I still have the urgency and spasms when it does, but it is no where near what it was before. If I feel my bladder is acting up again - that's when I decide I will do another round of Cystistat, since others I've spoken to who do cystistat do this too.

When I was first diagnosed and had my cysto - we were able to see the actual glomerations and had blood oozing out of some of the glomerations- this was not during the Hydro which I had 3 weeks later, but just the in office cysto. The doc. classified my IC as moderate/severe.

The good news, I've had several cysto's since and there are no visible glomerations - so something worked right!

Hope you start to feel better soon! Take care of you!

[loro]

well I go for my 4th instill on April27th so I will let you know how it goes. It is good to hear that you had sucess with moderate to severe IC. I think that is where I am at too. I haven't had any cysto's since I was diagnosed. I did not care for the first one too much It hurt me real bad. I know for a fact I am not empting my bladder. I am hoping with the combo of my PT and the instills I can get on to a better life. Not sleeping is killing me. I am in a constant feeling that I could pass out at any time. And not to mention I am sick of this burning. I don't even care about the food any more I just want to feel normal have a normal relationship and be happy again. I am not myself. I have anxiety I never had axiety before I don't even know what to do with that. I feel like a freak. I thought I was goona pas out when I was going to get car insurance the other day I thought yeah there goona wana insure me. I swear I am not goona pass out on the wheel. I can't even drive I don't even know why I was there in the first place. I didn't even mean to ramble in this post I am just going crazy I wana have some sanity to my life. Ther are so manny layers to this disease. It is hard to imagine that in two weeks I coud feel compleetly difrent GOD I pray that is for real. I would be sooo happy that I would not care about the 200 I would pay 1000 dollars if I could just get my sanity back. Well it is good to hear from someone that had sucesss with this I can't wait to write my story in the sucess section of this board.I am glad it worked for you
Loro

[CaliAnn]

loro - what are your main symptoms?

[loro]

frequency,urgency,vulvar pain, burning, and headaces.

[CaliAnn]

I understand your frustaration and the "I want to feel normal" again feeling. For myself, the first year of dx was the hardest. While I have my IC pretty much under control, I now have another new disease to cope with that gives me the same "I want to feel normal and be normal and do normal things" - it is tough, but IC taught me that I can be normal again, 'cept that normal now has a new meaning for me. I think the anxiety that we get is due to the frustration with these awful conditions - conditions that the doctors don't really understand, symptoms that vary from person to person, treatments that differ from person to person, lack of sleep and all the overlapping conditions that seem to crop up after diagnoses.
I hope that your personal situation is that you are able to get sleep when you can (naps). I know it never really makes up for night full sleep, but I guess it's better than going without anything. I think the lack of sleep is what is making you feel like you are going to pass out - that and the anxiety - one is probably feeding off the other.
I really hope you start to get some kind of releif soon.
Take care of you