First bladder installation, help have ?'s

[pmap]

I just came back from seeing my uro. I was not expecting an installation today, but got one. He says this is going to make me feel better. I go back every other day for 2 weeks for these! My questions are for those that have traveled before me. Has this helped? Right now all I feel is this unrelenting need to pee! IT won't stop. Much worse than before this treatment! I also have intermittent "Holy Cow" kind of pain, luckly it does not last long and goes away. Is this normal? Just looking for info from any others that have been there and done this. thanks
pmap

[Dixiefireball]

what type of treatment did you have today did you have a dmso or a cocktail treatment?
i use the cocktail treatments at home and they have helped me so much even with the pain i hope what ever type of treatment you taking will help you.
if you know the name of it i may be more help to you.
if you can come to chat tonight and there is great ladies there that can help
sending you hugs and pryaers
Rhonda

[shennan]

i have heard it gets worse before it gets better with dmso instills.

what kind did ya get?

dixie has good luck with heparin. nothing for me so far, except a little less peeing, but the pain and pressure are bad still. the urgency comes back after abot 5 days. it doesn't last for me.

hang in there......

:)


dixie, happy b-day late..... :dance:

shenna

[Myli]

Yes, for me in the beginning, they hurt and I needed to urinate all the time. I also sometimes had flares afterward. Unfortunately, mine were done at the same time they were brute force stretching my urethral opening, so that only increased the problems. It took some time, but most of the time now, they don't hurt and the increased urge doesn't last more than a day. You might try taking Uristat before hand so it numbs things a bit. Maybe even a pain killer, if you have them. But it did take months to reach the level of semi comfort I now have with them. I think they have helped, but it wasn't easy to keep going when they were hurting.

One thing my uro did for me was to numb me both before and after the treatment, which often made it possible to hit home before the pain and urgency hit.

Currently, I am able to hold the DMSO on average of two to three hours before I have to urinate. If urgency hits, sitting on my trusty icebag stops the need. So, for me, it is working and I have a lot more good days than bad. :woohoo: Hang in there, it could be worth the effort and pain, but do talk to your doctor about it.

:grouphug:
Myli

[XoChelsey03Xo]

I have been doing installations for about two weeks now. I have been peeing like crazy since my second one. My first one I did really well with. I can actually eat anything without getting pelvic pain. I hope it gets better. I hate having to pee all the time. Chelsey

[kelly McC]

I have been getting instills for about 6 months now for me it was a bit uncomfortable in the beginning but I do get some relief from from them now. Good luck and hope your feeling better,
Kelly

[pmap]

I'm not sure what was in it, lots of stuff. Uro did call it a "cocktail" 6 different drugs two I rember was Rimso ( sounded like that) and heparin. I go back tomorrow for my next one and every other day for 2 weeks. Is that a normal schedule for "cocktails"?

[kadi]

Rimso is the name for DMSO. It is usually instilled once a week for 6-8 weeks initially, then if it helps, once a month for awhile after that. The first few treatments are pretty well known to make you flare, but after the first few treatments are over, it can get better. I've never heard of having DMSO more than once a week... (Heparin? yes, every few days, I've heard, but never heard that for DMSO).

I have been helped by the DMSO cocktail (Rimso, Heparin, Solucortef, Sodium Bicarbonate & Marcaine). I hold it for 20 minutes, then void. When I was having the initial series of 6 treatments done, I took Darvocet about 2 hours beforehand & Pyridium the morning of the instill. Those helped me be able to hold it the 20 min. (The first one I could only hold 10 min). I noticed some small improvement around the 4th treatment, but the bigger improvement came about 10 days after the series was over.

I have less pain & less frequency now. My energy level is better & I sleep better. I am now able to do some exercise, which I could not do before this. I am still limited in diet, which is disappointing, but have no regrets. I don't think I really realized how sick I was til I started feeling better.

I wish you much success with your treatment & better days soon!

[ICNDonna]

It can take a while before the DMSO helps. I know it took several treatments for me before I had any benefit. I'm on a monthly schedule now and still have some discomfort on DMSO day, but the rest of the time I do well.

Sending encouraging hugs,
Donna

[carlamcconnell]

So I was just diagnosed with IC I am so glad I found this site I was starting to think all this pain was in my head, and the Dr. just made this up to satisfy me since they had done every test there was and found nothing. I was diagnosed with Fibromyalsia about a year ago and have alot of symtoms due to that. When I was diagnosed with IC I was upset all I could think was what next? I had my first installment last week and go for another one on Thursday. I have to have 4 installments 1 time a month I am wondering how well these treatments are working for you guys and if you think there is anything else other than the treatments. I still have severe pain and I am really hoping these treaments work. Does anyone else on here have fibromyalsia also? My Dr. told me these go hand in hand.

[Diamic65]

I had a installation and it was awful for me. The pain was bad. But maybe it will work for you. I told my DR that I do not want to do it again. I was in so much pain that my husband had to take two days off from work to take care of me. I do hope it works for you:angel:

[carlamcconnell]

I guess it went better for me just because a week before the installation I had to have a scope of my bladder done..now that is pain my friend.. But seriously the installations are painful but I am in serious abdominal pain and anything has to be better then constantly being in pain. I feel very uninformed right now though and I thought this was a condition that would go away after the installations only to read on the internet today that it is a condition that will haunt me for the rest of my life. I am trying hard to stick to the diet but finding it very difficult since all the stuff I love I can no longer have! Did your doctor put you on oral medications to help you instead of the installations then?

[Diamic65]

Hi, yes she did. I see a PA instead of my uro. I only see him when I have surgery. I feel lucky to have her since she is a women and understands the female body. When I take Darvocet and Lortab when it gets really bad. And at night I take Vestral. Do you feel like you have IC brain? You can not remember things and get confused? I have been that way ever since I came down with IC.:loco:

[carlamcconnell]

I would like to see a doc a little closer to me right now I drive a hour to and from the appt. I have to go once a week. It is tough and I hope that the pain gets better I never thought about asking for pain medicine but I am goign to when I go in Thursday because I just cant take the pain anymore. as far as the IC brain goes LOL I am fuzzy all the time I forget everything, I read that it may be from the fibromyalsia! I am just glad they diagnosed me with something I think my regualar doc was starting to think I was coo coo. I have also read that just 4 installments may not work either..so now I am kinda freakin out thinking this is never going to go away. I get constant headaches also is this something that you have also?:bonk:

[Diamic65]

:hi: Yes I have headaches all the time. My family Dr thinks its because of my age LOL. I finde that the pain meds do help with the IC. Also stress can cause flars. I try to stay stress free but I'm type of person thinks she can help people like my family. So why do you have to go once a week to your URO? My drive is about 30 mins. :toilet:

[carlamcconnell]

My doc thinks that if I can get the inflamation under control then the headaches may go away. I have installations every week for 4 weeks, thats why I have to go in every week. Stress is a part of my daily life my husband is newly diagnosed with MS and my oldest son is disabled I tell people I wouldnt know how to function without stress LOL..

[SharonA]

Oh my goodness...You do have a lot going on. I am so sorry.

Please spend some time reading the Patient Handbook. You can find a lot of information there about meditations and treatments that might help you. The link to it is in my signature below. Also, click on the "Patients" link that is located toward the top of this page under the large print title. There really is a lot of information available on this site to help you learn about IC.

[angel7655]

Just finished my DMSO treatments a month ago. I had three. Once a week. I didn't feel better till about two weeks after my last one. I too had that horrible urge to pee all the time after them. I didn't notice any difference untill that third one. It wasn't as bad as the others and easier to hold for 20 min. My doc says most people don't notice a difference till the third or fourth one. Now I'm feeling pretty good. Not 100 percent but it is dealable and sometimes forgettable. I'm happy I did it. I hope they work for you. Hang in there and good luck!!!

[sweetpea9928]

carlam hi i was reading all these replies on here i guess for the installations it is different for everyone i had 3 done and had no relief from them at all and the pain is extreme my uro told me today not to get them anymore cause they werent helping unfortunately he also told me it is a life long issue and there is no cure he has tried everything for me and nothing has helped still in the bathroom all the time the pain is horrible and the headaches are awful to my last option is a bladder stem hopefully it works is there anything else for any of you that has worked that maybe i could mention to my uro?????

[nekura]

Yeah, painkillers. Soma, valium, oxybutitin, anti-histmaines, heating pad, and the pills that make your urine blue. That's what he can do for you.

I wouldn't touch instillation with a ten foot pole.. but that's just me..

[sweetpea9928]

thanks nekura i am on pecocet what is the pill called that makes your urine blue? i personally wouldnt recommend the installations to anyone my experience was pretty bad and very painful im to the point where i just want my dr to take my bladder out...... everything they have tried just causes more pain now im down to last resorts