hurting after instillations

[grace 2]

HI, I'm getting heparin,marcaine,lidocaine and sodium bicarb instillations twice a week right now. I've had 4. I also have vulvodynia. After every one I flare to some degree. This last time it's getting better very slowly. I felt pretty good for the first half the day before I got it. :( I'm wondering if this is normal. I'm thinking that the betadine they use topically flares up the vulvodynia. Also just to be catheterized hurts. I thnk it is causing some constipation also, which of course bothers my bladder. Number 5 is tomorrow and I'm wondering whether to continue or not:confused: What has been anyones experience? Thanks, Grace

[blue]

I'm sorry, I wish I had some input, I haven't had that yet! I hope it works out for you!

[Kathi]

Ask them not to use Betadine. I always had to leave a urine sample so I used the wipes in the bathroom & that's all. I took 2 antibiotic pills after the instill (they gave them to me) any time you are cathed it's a risk for infection. I sat on a bag of ice when I got home & alternated to the bladder. Otherwise my:toosh: hurt. LOL Hope this helps. Kathi:thumbsup:

[grace 2]

Thanks Kathi:) Grace

[ICNDonna]

I'm on DMSO once a month now --- I started out with eight weekly treatments before moving to once a month. I don't plan on doing much on DMSO day, but the rest of the time it makes me feel so much better that it's worth that one part of a day being uncomfortable.

When I first started the treatments were very painful, but I stuck it out and now I'm glad that I did.

Hugs,
Donna

[lotsofgirls]

Hi Donna,
I did the 6 treatment route and I think I got some frequency and urgency relief but no pain relief. Anyway the relief I got was worth it, but I am wondering if I need a maintenance instill like you. How do you know if you need the once a month maintenance instill?
Cath

[ICNDonna]

I routinely go in once a month. If I have to postpone for a week or two, I can tell I'm overdue so we just stick to the once a month schedule.

Donna

[Sarojini]

I am pretty sure I need the maintenance instills... I am into my third instill-free week after my last DMSO (in a series of 6), and I am starting to notice the frequency/urgency increasing again (and pain too). Guess it's time to call the uro and set up some more instills!!

[blue]

How different we are. I'm getting pain relief from the DMSO, not any relief from the frequency!

[sing_to_you]

I too am going in for my 5th treament this afternoon at 11:30 with the DMSO and RIMSO-50 and Heprin I am also not finding that it is working for me, but I was thinking about giving up until I heard you ladies talk last night, so I am going to see it through to my sixth treatment like they want me too. wish me luck
sing_to_you

[Dixiefireball]

i take heparin and marcaine at home at least once a day and its helped me alot i almost feel normal again;) until i get a dang infection (uti):rolleyes: or its about time for my mthly that is about the only time i have trouble now.
sending you all well wishes
hugs and prayers
Rhonda

:kiss:

[mayray518]

One of the first treatments I received was DMSO. It worked for me for a year. I used to get them on my lunch hour at work and I remember the hardest part was holding in it for half an hour. It burned a little, but the relief from IC was worth it. Good luck to you.

[sing_to_you]

I actually have it in me as we speak right now, I just came back from a treatment. It is my 5th, and I have not had any luck with it as of yet I am hoping real soon here. Glad to here it worked for you that is Awesome!!!
Thanks sing_to_you

[Sarojini]

You know, I read an encouraging thing in the literature I got from the Interstitial Cystitis Association (ICA) when I joined recently... it says that many patients don't feel relief until a few weeks after the last treatment in a series of 6-8. Hmmm. Maybe that will happen for you??

I felt ok for a few weeks and now am slowly beginning to have more trouble... time for another! I called my uro and have a DMSO scheduled for next Wednesday at 10:30am.

We'll see if it helps again!

[sing_to_you]

I really hope that is goes great for you. I am going to write this and then go lay down, I just had an instill and just released it, and the burning is real bad up inside. like I said this is my 5th and for me it seems like each one keeps getting more intence instead of better, I am having them once a week . I could hardly walk afterwards. This just does not seem right to me. I really don't mean to seem like such a downer here, but I really did not expect this today at all, Not at all. It is making my scared to go have my last one next Monday!
sing_to_you

[grace 2]

Hi, I thought I'd let you know how the 5th one went. It was better than the last one! They used very little betadine and I think that helped. It also helps if they tape the cath to your leg to keep it steady. I felt better a lot quicker this time. Not sure if I'm getting any relief from them yet though. Tomorrow's number 6. I hope you're feeling better sing_to_you! :)
Grace

[Kimberly31]

DMSO seems to be a real tough one and how it works or doesnt work for you everyone is so different on how it affects them.
I can tell you from my experience my body didnt accept DMSO at all!!!!!!!!!!!!!!!!! I would of had my son over 10 times than do DMSO again! I had a series of 4 with a infection weekly every time.
They really work for some and make things worse for some. The best advice I could give you is for you (not the dr) to weigh out the pro's and con's on how you are responding. Maybe you should start a journal so that you write down exactly how you feel before, during & after your treatment.
If it is just too much for you dont feel like you gave up on it at all you are NOT the ONLY woman it didnt help believe me!
Some women cant live without it,,,,,,,just amazes me how different our bodies respond to someone else.
Keep your chin up and become very selfish with this IC disease sometimes it is very important on focusing on yourself!
Hope you have a pain free day:thumbsup:
Kim

[sing_to_you]

Thanks Kim
Hope you are have a pin free day as well
Not id did not go well and I have canceled the 6th one I do not want to go back and have another one I do not think it is for me.
But you are right there are so many people out there that it is right for, and I am so happy for them
sing_to_you
:)

[1tuffcookie]

Sing_to_You:

Please try not to worry about being a "downer." That's one of the things we're here for--to help each other through suffering. :grouphug:

I know exactly what you're going through! I had severe pain, urgency, and frequency for all of my 6 DMSO treatments. I could hardly walk, either. After a treatment, I would do nothing but lay around with ice packs reading or watching TV. (Except for trips to the bathroom, of course.) Pyridium helped some. I was also one of the unfortunates for whom DMSO did not help at all.

Right now I'm just getting over a flare. But prior to this, I finally had a long remission. I'm on a combo of oral meds. Anyway, I'm saying a prayer for you. It will get better soon! Hang in there, and if you need anything or just want to "talk" you can send me a PM. Take care.

[carolynwk]

I also have vulvodynia along with IC and contracted both at the same time about 2 years ago. The pain from both was pretty bad and my urologist put me on Neurontin which has nearly controlled the pain from both. It has been a god - send. It may help you with your pain level. Good luck!

[1tuffcookie]

I'm taking Neurontin, too. I think in combination with my other meds that it helps. Singulair has really helped with frequency and urgency. Plus I'm on Elmiron, MSM, and pain meds. I'm in a flare right now that was triggered by a pelvic exam, but before this I had relief in a months-long remission.