Increase frequeency w/ Instills??

[Lyn40]

I have had 4 instillations of Marcaine & Cromolyn for my IC. At the time I started, I was in a terrible Vulvodynia flare. I had 2 injections for that, which has helped tremendously. But............I am having terrible frequency with pain.

Has anyone experienced increased frequency with the instillations?

Thanks, Lyn

[L. Thomas]

Instills have always helped my frequency. I have had to substitute Elmiron for lidocaine and the Elmiron does not seem to be as effective.

[jen74]

You might want to make sure you do not have a UTI. Any time you do instillations or use a catheter, you are at risk of getting a infection.
Jen

[SharonA]

I also think it would be a good idea to have your urine checked to see if you have an infection. It is always a possibility when you are catheterized even if you have it done in a doctor's office.

[SufferingBad]

Hi,

I'm sorry to hear of your discomfort with the treatments. I'm new to the board and considering doing the "rescue treatments."

I've had IC for over 20 years along with a severe disc problem in my spine. I've had many different treatments for my IC, but I've only had DMSO instillations in the past.

I'm having a severe flare now that's even raised my blood pressure from the stress and pain of it. I was under the care of a urogyn for a bladder prolapse that happened in 05, but he doesn't manage IC. I've spent weeks trying to find a urologist who will treat IC. I actually had urologist office's say "no way do they treat IC!"

I just feel so desperate! I'm going to the bathroom all day with no relief after I urinate. I just feel I have to sit on the toilet all day. The pressure in my bladder is constant to where I'm not sleeping.

I finally saw a PA yesterday. I had to wait at least an hour for my appointment, and didn't even meet the urologist. They mentioned using "the Dr. Parson's rescue treamtent. They use 2 treatments a week for 6 weeks and said its a 50/50 chance it may help me. I've had distentions in the past that help after awhile, but at first I'm in misery from the irritation of the distention being done. I need to come to a decision by next week. Do I go ahead with the distention or get the treatments?

I wish your pain relief soon from your treatment. Take care and so nice to meet you. I'm sorry your suffering with this disease too.
sufferingbad

[ICNDonna]

If they are willing to do the rescue treatments, it could be worth a try before you go for the hydro. Dr. Parsons is well known in the IC world. Hydrodistention has been a major treatment for me since my diagnosis in 1975, but if I could find something else it would make me very happy.

Donna

[SharonA]

SufferingBad...:welcome: to the ICN...

I think that the rescue treatments are the way you should go first. They seem to be less invasive than the hydro. If they don't work for you, then you can think about having the hydro.

Are you following the IC Diet? You might try that if you are not at the present time. The link to the Diet is in my signature, below.

I hope you can get some relief from the flare. :):):)