Has anyone not had any of the instill work

[daynuts06]

Has anyone not had any of the instills work. Or where they work for a while and don't work anymore and if so what do you when you are flared up? For some reason none of these instills are working for me and I have the interstim and doing PT but I still get flares and not sure what to do.

[ICNDonna]

I wish I had an answer for you. I have had several different kinds of instillations and they all worked to some degree. Are you sticking with an IC diet?

Donna

[leelee88]

What type of instills are you talking about? There are a few differant ones..

[daynuts06]

I have done Elmirion Instills, IC Cocktail (sodium bicarbonate, lido, and heparin), IC Cocktail (lido, heparin, hydrocortizone), and DMSO.

[bunnykinb]

Oh my, I don't know of any other cocktails for you. I have had Elmiron instills, heparin once a month, DMSO weekly, and now heparin, lidocaine and sodium bicarbonate. I was feeling better but have been getting the burning again on/off since last week.

[daynuts06]

My dr yesterday did a elmirion instill. I felt worse afterwards. I also felt something throbbing down there. So when I went to do my PFD exercise today the muscles were hurting!!!! So I am wondering if my uro is right in the aspect that this is mostly PFD. I loved the IC Cocktails but after awhile on them I noticed that the frequency and urgency were coming right back except on the days that I had them. That is why my dr is so pushing the PT. She said that she can do instills when I am in big trouble but other than that she really wants me focusing on the PT.

[L. Thomas]

I have read several post where the instills work to some degree and then they don't works so well. The ICers stop instills for a while, some only a few months and some stop for a year or longer. Then they try instills again. Instills just aren't the answer for everyone although for most there is some relief.

Hope you can get some help soon.

[mlzippy7]

I haven't had any luck with all the instills I have done as well. I know many people do have relief with instills but I was not one of them.

[cara1336]

i use just plain marcaine and mucosa compustium i feel some relief although i have pain with the instil from the cath it helps i alittle but not much.. keep trying... everyone is different good luck :smile tee

[kadi]

My instillations are heparin, marcaine, sodium bicarbonate with a non-latex catheter (very important). These have been working for me for 2-1/2 years (and I really hope they don't stop working because they're the most effective treatment I've had).

The DMSO cocktail instillations helped some, but not nearly enough. The heparin, lidocaine, sodium bicarbonate instillations also helped some (better than DMSO), but I still had burning.

Even with the instillations & oral medications, I still had pain & that's when I did the pelvic floor physical therapy. And that is now a very important component of my treatment plan.

IC for me is a war & it takes battle on many fronts to "win". I can't skip any part of the treatment plan & still feel ok. Every day it takes diet, oral meds, instillations, physical therapy & exercise, stress- & schedule- management in order to feel okay & have a good quality of life. It took 4 years to return to health once I got IC, but I can say my life today is pretty good again. Hang in there,

[gigisgirl]

I had rescue instills for 2 years that worked great. Then in 2007 my pain urg/frq came back and I went in for another round of instills. They didn't work. So she tried DMSO, thought I was going to die it was so painful, couldn't even make it out of the docs office without peeing it out. Then she tried Elmiron instills, nothing. So now I'm at a pain clinic and doing pt for my pfd. I just don't know what happened. My body responded to them so well for those couple of years and then nothing.

[daynuts06]

I can totally relate to what you are going through. The instills-all of them worked great for a while and then boom right back to the beginning. That is why I am a firm believer that PFD has a lot to do with symptoms. Someone actually just told me that they do not believe that having PFD can cause urgency. However that is not true. Many articles on the internet prove that PFD can cause freq/urgency and urgency. I think within the last day I have had the biggest of bombs dropped on me and I think for once in my life I am on the right track. I have had many nurses and drs tell me that PFD can cause same symptoms as IC. The first few have been rough but now I am willing to ride out that storm.

[stacey323]

I learned never to listen to a doctor who says 'this or that can't cause this or that'. In fact, I won't go back to a doctor that says that. If they say 'I haven't seen many cases of this causing that' it indicates they are open and believe what you are saying. (in my opinion!)
I told my doctors for YEARS that birth controls cause flares in me (IC wasn't even on the books as a 'condition' yet so it was me stressing to much. If I have to hear that one more time............
Anyway, now, all these years later, guess what? There are many cases where people with my conditions are highly sensitive to birth control/hormones. I could have prevented several flares that lasted a significant amount of time if I had trusted myself and refused the birth control pills that don't have any affect on IC!

[bunnykinb]

I was doing better with the instills from Feb. this year to early June. Since mid June, the instills don't seem to be helping. I did see a urogyno who said that I had vulvar vestibulitis and pelvic floor spasms which could be contributing to 50% of my burning.

One thing though, the vulvar vestibulitis low oxaulate diet is opposite the IC diet. Ugh.

[mimi1027]

I know it has been a while since you posted, but wanted to tell you I have had two instills. After the first one I felt great for 12 hours and then the pain was back. The second instill no pain relief. So, instills do NOT work for everyone. The nurse was shocked to hear I didn't get any relief, but it is true.

[daynuts06]

What kind of instill did you have?

[kadi]

Just a note... Birth control pills can either help or hurt IC. For me, I got IC when I quit my bc pill; my mom got IC when she quit her hormone replacement therapy estrogen. We both got better when we went back on them (though the IC did not go away...).

[daynuts06]

I have heard that hormones do play into IC or the symptoms of IC. I get worse the week before my period and the week of. Not sure I have IC. Two docs told me no and that its Pelvic Floor Dysfunction and therefore that is why none of the meds or treatments have worked for me. But I firmly feel hormones play into it.