how often instillations?

[klassdg]

Dear Donna,
I am new to this group. And have had only 3 instillations done by a
Neuro-Urologist in last 7 months - the last 3 months have been unbearable.
I have had 2 instillations and only found out about "home instillations" from
my MD IC group leader, and her leading me to this site.

Although I have begged him for a "back-up" plan this last time, since he
was away at the Urological Seminar during a Flare Up, and my Internist
was incensed that 19 other Urologists couldn't do an Instillation -
he did not tell me nor teach me Home Instillation.
Apparently he does not teach anyone.

I have an appt in August at University of MD with Top IC research
Urologist but till then - I see this guy next week.

I am in so much pain for so long that an instillation would help so much.
Also, he says that he is only allowed to do one instillation every 12 days,
which Medicare told me is not true.

When I see him next week - should I insist on multiple instillations until
I feel better? And ask him to teach me how to do it at home or just
wait for these other Drs to teach me?
Thanks,
Diane in MD

[Dixiefireball]

Klassdg,
It wouldn't hurt to talk to him about this. Exp. if you feel the installments are helping you. It may be some type of mixer he is trying on you that he is scared to do them more then every twelve days??
I would ask him what is in the installments he is using.
My installments is of heparin, marcaine, steral water. I can do them up to three times a day at home. (i've done them four times a day too.) with the approval of my Dr. plus I had to work my self up to that many a day. i wouldn't tell anyone to try that without their Dr's approval. I do know with my mixer its safe to use at least once a day. I would go to the IC handbook and do your own research and take to your Dr. about the installments (make sure its has the medicine used in the treatments on the information you take him.)
talk to him about it.
Please let us know we are here for you, we do care, we do understand
you can find the patient handbook at www.ic-network.com/handbook
sending you hugs and prayers
Rhonda

[Katrina]

If your doctor isn't helping you or even mentioning all of the options maybe you need a new one.

I know I was allowed to do instillations twice a week.

I would ask for what you want......and hope that the expert gives your current doctor a treatment plan that will work better for you.

:grouphug: Good luck