Heparin Instills??

[Braedley]

hi everyone,

my doctor and i are on a quest to find something that will work and be safe while i TTC/during pregnancy and Heparin Instills is one option we're going to talk about...

how many people have had success from these and what do i expect from the treatment? immediate relief? days, weeks, months?...(i realize every person differs but some inkling would be nice)...how long does each instill give relief for (roughly)??

i would be doing an in office procedure (not self medicating at home), but i'm unsure what to expect and what it does b/c it's not something i've done before, i'm currently on Ditropan XL but it is not safe to use for TTC/Pregnancy...

any help or experiences would be appreciated, it's been a very difficult time trying to get this sorted out...
Amitryptaline (Elavil) doesn't do much so if this is an option that works, i would be more inclined to try it...

[L. Thomas]

I have been doing home instillations since 2004 and have had no problems. You can check my success story and hilpful hints in my signature. If you have any other questions just pm me. I am sure my urogynecologist would be happy to talk to your doctor about instills in general. PM me and I will give you the web site for the Female Pelvic Institute.

[mum43]

:hi: Hi ladie's,
I tried Heparin instill's, it burned my bladder really badly, so the doctor stopped them after a few trie's.
I hope this work's for you.

hugs xxx

[cindydi]

I tried heparin instill but it made my IC worse. Probably because all my pain is in my urethra and any trauma there does not help my pain.

Hope you find something that works.

Cindy

[Berkshire Road]

I do home instills of heparin, lidocaine, and sodium bicarb. My dr. gives me pediatric catheters which we then lubricate, and as long as I can relax there is no pain putting it in. I get immediate relief because of the lidocaine, which numbs the tissue. I do the instills twice a week, or as a rescue if I feel really bad on any given day. Lidocaine is a miracle for me, but some people are sensitive to it and they feel a burning sensation. Also, some people have latex allergies and may be reacting to the rubber in the catheter. There are a lot of reasons why these instills may not work for some people, but some of those reasons can be eliminated. I guess you just need to try and see.

[girl]

I don't know how typical any of us are here, :hi:
I do the heparin in office once a month. I began with a series of six, once a week for six weeks. By the end of that six weeks I felt better than I had in a looong time.
Now I go back once a month for a maintenance dose. Unless it is fall or spring, when I may have to go every couple of weeks, because I am severely allergic and my bladder reacts quite badly to histamine.
My once a month does not keep me pain free, by any means. Here's hoping it will help you.

[Braedley]

girl,

what do you take to manage your pain? mine isn't that bad, but it's definitely there sometimes...usually some extra strength tylenol and heat help that...my doctor is rec. tylenol arthritis as it's an extended release version i guess...

my symptoms are mostly the pressure/urgency/frequency (not usually the pain)...how does the heparin help these things? (not sure how it all works)...

[girl]

Braedly,
I take codeine 60mg for pain. Pain is my number one problem, the freq/urgency are manageble for me on Vesicare. I really don't know how it helps - my doc says they don't even know, that there are several theories of the mechanism it uses to help. He says heparin is very similar to the bladder's GAG layer, and so it kind of "coats" the bladder.
I know I get almost immediate relief from the pain with it - it just doesn't last.
Hence, the codeine.
Here's hoping it will help you!!

[L. Thomas]

girl,

what do you take to manage your pain? mine isn't that bad, but it's definitely there sometimes...usually some extra strength tylenol and heat help that...my doctor is rec. tylenol arthritis as it's an extended release version i guess...

my symptoms are mostly the pressure/urgency/frequency (not usually the pain)...how does the heparin help these things? (not sure how it all works)...

I don't need anything for pain because it is so seldom. When I have "pain" it has always because I have ignored my symptoms and put off doing an instillation. As soon as I do an instill everything is just fine. My relief is instant and last about 2-3 days. I have mild IC but I have a lot of bothersome symptoms.

On the average I do instills 3-4 times a week. There are times that I have gone as long as 10-12 days between instills and there have been times that I needed 2 in one day.

The way my urogyne explained it to me was:
lidocaine numbs the bladder lining
heparin acts on the bladder lining
sodium bicarbonate "foams" inside the bladder and allows the heparin be infused into the bladder lining better.

When he explained IC to me it sounded like a heart attack of the bladder. The bladder stops its normal smooth contractions and shakes. The instills calm everything down and sort of gives the bladder a time-out. When the lidocaine wears off the bladder has had time to relax and then can regain its normal rhythm.