Finally got diagnosed & rescue instill now hurts...

[diane22]

So today, I finally got diagnosed with IC. The dr. (an obgyn who specializes in IC & who was recommended on this site) did a rescue instill and it felt better initially. But now (approx. 3.5 hours later), it's feeling quite awful. I have an urgency to go, achiness, and it burns when I do go. The dr. also gave me a prescription for Elavil & Elmiron. The dr. used a pediatric feeding tube (tiny) as the catheter, and it still hurt (and now hurts more). Do I need to keep doing these instills? Can't I just use the meds and see if it helps? I was just starting to feel better after a month-long ordeal (first a UTI, then 4 rounds of antiobiotics for continuing symptoms)...
Diane

[mlzippy7]

I am so sorry you are suffering so badly. As far as having to do instills....you do not HAVE to do anything. It is your body and you decide what treatments you want to do. The instills do help many people BUT they also make others worse. You just need to try what works for you. If you think trying the meds for a time is best than maybe talk it over with your doctor and try that route. There are so many options to try. Hang in there!
Good luck finding what works for you!

[leelee88]

diane22,
I fell like this. While it is important to listen to your Dr. It is also very important to listen to your body. And you do what YOU feel is best for it. My URO wanted me to do the instills but I wanted to wait and just see how I did with the oral meds first. I am doing pretty good. So you do what you feel you need to do for your body!!

I wish you the best..

[diane22]

Thanks for your advice (both of you)! I don't think I'm going to try another one of these anytime soon. The dr. recommended once a week instill treatments over the next 6 weeks.
I was totally fine in his office and was even able to hold the instill without urinating for about 1.5 hours. But ever since I urinated for the first time, it's been hell! It seems like it's spasming and I'm getting worse by the hour. I'm going about 4-5/times an hour and it hurts every time I go (and I still feel like I have to go when I'm done). I have Prydium, so I took that and am waiting for it to kick in.
Does anyone else have to pay an arm & a leg for Elmiron??? It's only available in brand name (not generic), and my deductible for brand name drugs is $200! So the first prescription of 100 pills will be a whopping $230 (apparently it's $346 without insurance)!!! I'm flabbergasted & disgusted with our insurance system. How do people without insurance buy this medicine? I'm putting it on my credit card today, but the price is ridiculous!!!
Diane

[kadi]

Hi Diane,
Did you have a rescue (heparin, lidocaine or marcaine, sodium bicarbonate) instillation? Or a DMSO instillation? Even though both are put in the bladder with a catheter, they're not the same & the first several DMSO instillations are often painful & cause flaring. (After that, for many patients, it gets better.) That said, even rescue instillations can be irritating if held too long. I've been doing home rescue instillations for 2 years now & if I hold the solution longer than an hour before voiding, it burns & I flare. For me, 45 minutes to an hour is just right.

Also, if the instillation initially helped, but became problematic later, there are adjustments that can be made to the concentrations of medicine, type of anesthetic (marcaine vs. lidocaine - I find that lidocaine burns, but marcaine is great for me), type of catheter (latex catheters give me a nasty burning sensation, so I use non-latex caths), dilution with sterile water, & holding time.
Basically, it's worth it to do some experimenting before ruling out rescue instillations.

Have you checked out the diet here? Very important to adjust the diet to reduce bladder irritants. NONE of my medicines work if I eat something that triggers a flare, but if I stay on track with the diet & use my treatments, most days I feel good.

Hang in there. Finding what works takes some trial & error, but it's worth it.

Wishing you better days soon-

[diane22]

Kadi,
I think it was a rescue instill -- heparin was mentioned. I don't know about the other ingredients in the cocktail...It seems my pain is in my urethra, mostly. I don't feel any pressure/pain in my lower pelvic region at all. It's all relegated to the lower region.
I noticed in your sig. that you use birth control continuously. Does that help you with this condition? I just got off the pill several months ago and this all flared up soon after I got off. Could that be related???
Diane

[leelee88]

Diane, I am also on continous birtcontrol and I know I could not deal with IC around that time of month if I was not on them..

[diane22]

Yeh, I should probably get back on. However, at my age (37), I'm worried about hormone overload. My bf got diagnosed with breast cancer this past year, had to have a double mastectomy, chemo and ovectomy. She tested positive for the BRCA 1 gene so her chances of recurrence was 87% (hence the mastectomy). Ever since then, I've been doing my research on the pill, and it does slightly increase the risk of breast cancer, especially if one has the gene mutation. I suspect I may have it because my maternal grandmother died of it in her 40's...
Anyway, I probably over-reacted and halted the b.c. too soon. What pill are you guys on? Low dose?
Diane