Trouble with 3rd DMSO install

[suezan]

Friday was my 3rd instill..
I was actually feeling pretty good that day
and when I gave my urine sample,
it even had less blood than normal!
(hummm, maybe the instills are working??)
My uro and I talked about how the treatments were going I had told him what I was experiencing..
with my other 2 instills,
Right after treatment and the first day,
Frequent urinating
like every 5 min and just going a drip or two,
burning (that peeing glass feeling)
spasms in my urethra,
Nausea Migraine.
Than as the days went on the symptoms would get better and better
and I would even experience
No PAIN
with holding urine or even *ACTUALLY* going pee..
just a little burning after for about 20 min..
I'm thinking that this is helping after all..
even with
Having the first day of pain and feeling head-achy and nauseous..
He didn't seem to think that my migraine and nausea had anything to do with my treatment..
and he said,
about the pain and discomfort as he called it..
was all to be expected.
so we continued with the 3rd instill of DMSO.
The cath went okay..
(since using a non-Latex cath)
I got dressed, and headed to the bathroom.
I just can't hold the instill very long.
The uro was in the hall and told me to *TRY*
and hold it a little bit longer..
(STUPID ME) listened and went back into the room
like a pup with her tail between her legs..
CAUGHT trying to pee!
ahhhh!
Well, the pain got worse in minutes
and I had to go to the bathroom no mater
who was in the hall.
when I stood up.. I was doubled over in pain..
cramps, burning, lots of pressure to pee..
I thought I was going to wet my pants..
I got to the bathroom sat down and I couldn't go.
the nurse came in and doctor came in..
I couldn't go..
told them I was closed shut..
I had to hurry home to get in the tub.. (1 1/2 hr trip)
I got up and the nurse helped me to the elevator and I went as far as the stairs where my daughter was waiting in the van for me.
I even had to have a man go get her attention so she could help me walk.
Well, I ended up back up in the doctors office..
having another cath (Latex?)
to get the instill out and
relieving the pressure in my bladder.
He could cath me
but I could feel the swelling in my urethra..
and it HURT TONS!
The pressure was gone right away which was a relief..
but the cramping and on FIRE burning stayed the same..
All I could do is lay on the table hugging my knees.
The doctor gave me a shot of toradol in my hip
and I quickly asked for an Ice pack to put on my urethra..
I laid there until my husband came to pick us up.
I got home and went to bed (after trying to pee) with my ice pack.
My daughter got me dauladed for pain and a suppository of compazine for the nausea..
I tried to relax and just fall asleep for a while..
I did
and when I woke up..
about 2 hrs later..
I went to the bathroom and again..
just a trickle that felt like a full bladder ready to explode!
I don't know if I had retention or not..
I ended up being able to pee about 9pm that night.
Woke up feeling pretty good in the morning and able to both hold my urine and go when I wanted..
Now, today is the 3rd day.. and I'm having a slight headache.. that feels like it could be a migraine, cause my vision is effected.
and I have burning for about 20 min or so after I void.
and than pain free the rest of the time..
so,
what do ya do?
My uro said NO way were we going to continue DMSO instills after he saw what I go through..
which made more of an impression cause he saw it first hand instead of me tell him about it.
We have to talk and decide what to do...
it's a tough call cause I do feel like some response is positive...

[suezan]

I go tomorrow to my uro for my 4th instill..
well, he might not even do it.
I called his office and they said we will talk about it tomorrow..
I don't think he wants to continue..
Guess we will be back to square one.. figuring out what to do next..
I'll post

[kadi]

HI Susan,
Just wanted to send you a hug via internet. Sounds like you've had a time of it.

My uro said there is no point in holding DMSO longer than 20 minutes. Said more than that is just going to increase side effects & not benefits. I used to feel achy, mildly nauseated, and headachy the day after DMSO & I only held it 20 minutes, never longer. Don't know how long you're holding it, but maybe that's part of it?

Also, maybe consider rescue instillations if you've not tried those already? I had partial improvement with DMSO cocktail, but great improvement with heparin/marcaine/sodium bicarbonate instills at home.

Wishing you immediate relief now and better days soon!

[Katrina]

http://www.keysurvey.com/survey/98271/aa4e/ Where you take a survey on DMSO that will be given to doctors.

I don't recommend DMSO ..........have you tried rescue instills?
http://www.ichelp.com/TreatmentAndSe...medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.

Good luck finding a treatment plan that works for you!!