Extreme pain after an instill?

[just1ofamillion]

I've had a total of three instills and the first two were quite painful, but I could deal. After a day or so, my bladder would stop spasming. Then my doctor changed the "recipe" if you will, and I have NEVER been in so much pain in my life! I couldn't stand up straight. I couldn't sit down. I called my doctor's office sobbing in pain and the nurse told me it was "part of the process" and wouldn't call me in any pain medicine. I had to call my bf to come over just to lay me down b/c I couldn't stand to move. Has anyone else had this problem?? Am I the only one who can't tolerate this?

[kadi]

What were in the instillations? Some instillations are "rescue" instillations & those have soothing ingredients in them. Other instillations are designed to provoke mast cells in the bladder to dump their toxic contents. Those instillations have DMSO in them and the first few are often painful and provoke a flare. The theory on this is that once the cells have emptied of histamines, you will have relief for awhile.

Another factor is how long to hold the instillations. DMSO instillations should not be held longer than 20 minutes - my IC specialist at Stanford told me that those instillations do not get any benefit from holding the solution longer & the flare the longer hold time causes just isn't worth it.

Also you probably need to be checked for infection. Any time we're catheterized, there is an increased chance of infection, and that includes when we have instillations done.

I hope you feel better very soon,

[L. Thomas]

There are people that have had the same reaction as you. Instills work for most but not all. I would talk with my doctor about the ingredients. I have not had your problem with my instills.

[Janette Rass]

Hi, I've had the same problem that you've had. The instills had heperin,& sodium bicarb, and something else I can't remember. I was a mess so i stopped those instills. I instead tried "Uracyst" which is Chondroiten Sulphate, a naturally occuring substance of the bladder. These seemed to help a bit, unfortunately they are also not cheap. Although at one time the company was doing trials thru my Drs office. It might be worth looking into, Good Luck!

[flowerangela]

yes.. i had this same reaction to the DMSO all the time in the beginning.For me,after my body got used to the solution,the pain isnt as bad when i have them done now. i always make sure i take pain meds before or after the treatment just in case.im sorry you are in so much pain. post-dmso time sucks.. i usually have to knock myself out and rest for a day or two.

[Mothergoose]

kadi: Thank you so much for posting the theory behind DMSO, I've had one treatment of it but my Dr. just said he Had had good success with it and would i try it, he didn't offer any other options and well besides cysto/hydro under anesthetic. He did the DMSO at the same time.

just1ofamillion: I always have problems after being cathed it can never pee for days after wards, and I had told this to this new uro (who I actually love so I don't mean to make him sound bad, but we were still in the stage of getting to know each other).

Anyways of course when I woke up i felt the need to pee right away, at this point I didn't know how long I had had the DMSO in me, the nurse said no I would be in recovery for an hour and then I could go. If I have to hold urine then I can't go when I want too, the feeling doesn't go away I just can't go.

What could I do I was pretty out of it and they gave me pain meds. Once in recovery the urgency was not as bad so I rest for a bit before tiring to go. I was given a glass of water to drink, (they could not understand why I wouldn't drink their apple juice, I all so had a fairly new nurse, who knew nothing about IC).

Anyways after awhile I tried to go and just as i suspected I could not go, they tried running water, and a few of those sorts of trick, they called the uro who said I was probably a bit dehydrated and because my bladder has a very large capacity from have retention for years and is stretched out I should drink more glasses of water. So after 4 hours and 6 8oz glasses of water, I dribbled just blood. They expected the blood from the cysto/hydro but not that much. Another call to uro who said I should be cathed for 3 days at least. I didn't want to do this as the cathing is usually what sets this off for me, and it is a vicious cycle I said I wanted to leave the hospital.

I was asked what I usually do, and I said I usually take my pain meds, and a couple of ativan (only thing that seems to help with bladder spasms for me, this was pre vaginal Valium) which I was not allowed to take in the hospital ( and they would not give me any more pain meds as I should not be in this much pain from the procedure I had, (boy do they ever need to be educated), use a heating pad, relax and and drink. That after a bit I would be able to start to dribble a bit and could do this Evey 10 mins for the next few days and then it should improve.

My uro was not too happy with this plan, but said i could do this as long as I didn't leave town, I live 200 miles from the hospital, I said I would stay at a hotel for the night ( I don't think I could have tolerated the drive home anyways) and I must come back to the emergency if I didn't start to go at least a little within a few hours. He said I had drank enough for my bladder to burst, but I know my body I was no where near this point.

As predicted it took a few days before I could pee any amount at a time, and the pain was awful but I don't know if this was from the DMSO or retention or all of it put together. Of course in a weeks time and I felt like crap I went to my GP who could not believe they had not given me preventive Ab's, I had a raging UTI at this pain t in time from the retention.

Funny thing is after all this I was in pain from it for about 3 weeks but a different pain, and my uro said the DMSO usually helps for about 3 weeks.

I would consider trying this again, at the time I said never again, but I do think the DMSO helped and if they had let me pee after 20 Min's which it probably had been by the time they gave it too me and I was wake in the recovery I wonder if it would have been different experience. Or maybe I am a sucker for punishment and I am just grabbing at straws for something to help when things are bad.

If I get an other DMSO treatment I will make sure some orders are in place at the hospital before hand, (my uro uses the hospital to do these treatments). I don't like feeling like I am coming off as a drug seeker when Al's I want is a little pain relief.

When it comes down to it we are all so different you just never know what going to happen to you with any treatment, no matter what has happened to someone else.

I really don't know what else to tell you other than maybe they would give you a rx for ativan or vaginal Valium for the post instill spasming. That is if you decided to keep trying them.

I really have found for me, strict following of the diet has done wonders and at the moment I would not even consider any kind of instill, but as everyone else I know that can change at anytime, so I would not write it off either.

I didn't write this to scare you, just telling of my experience, i can't say enough we are all so different you just can not predict what your outcome will be.

I would also say if you Dr. won't prescribe you anything for pain or help with relief when you are in tears, I would be looking for a new Dr.

Good luck I hope you are feeling better MG

[musiclover]

I had rescue instills a few times. They made me feel worse, so I don't use that as a treatment any more. As far as therapies go, I prefer PTNS where they put a needle in your ankle and put electricity in it. That helped me a lot, but it took several sessions to help. They were a lifesaver at the time before the Elmiron kicked in. But instills, I don't prefer those at all.

[Jocotter]

I am in the middle of having a series and I do have pain more on the day after the rescue treatment. Overall, I think it's improving and I am going to go through with the next 3. This is the first time I have tried rescue treatment.

[nat13]

The only time I have pain with instills if I have an infection. I feel pretty good for a couple hours after until the lidocaine wears off. I do them twice a week. When I went to once a week, I flared.

[nat13]

Oops, mine are lidocaine, elmiron, water and sodium bicarb.