My First (AND LAST) Bladder Instillation | Interstitial Cystitis

My Instagram: / _myjourneytohealing_
I've been waiting to get a bladder instillation for a while, and unfortunately me and catheters do not get along! Many people experience relief from instillations, but for me this was a one and done situation. I don't want this to discourage anybody from getting this done since it is so helpful for many people, but definitely speak with your doctor beforehand if you think you may have issues with the catheter. If anybody can relate to my experience or has any questions, please comment down below!
Lauren

[@DaniTanner-yp3qt]

I have had this disease for two years and I am so over it. For the most part, I keep it under control but my discomfort is mostly pressure. I have changed my diet and tried alot of supplements. There has to be a way to cure this

[@charlotte9385]

So sorry for your experience! Sounds like you went to a doctor not using the most modern technology. There are Katheter Free instillations available as well that are fully pain free. The Katheter is very damaging to the lining and explains the pain you had. Others have been quite successful with this treatment when using the newer versions and doing it consistently. Do you take N acetyl glucosamine or N acetyl cysteine? Any supplements to treat gut and bladder lining?

[@reflections.with.rhonda9269]

I didn't know NAC helps bladder lining.

[@sarahbeth1983]

Me neither I have some too! My dermatologist Recommended it actually.

[@AMultipolarWorldIsEmerging]

My horrible doctor , dr Singh of OC urology, had his incompetent nurse put the catheter in me 7 times. Some doctors are low key sadists or just don’t give af about anything but money

[@sara54501]

Can I ask what/how you're treating your IC now? Thank you

[@ArielShannon-s5f]

Terrible you went through this. This is debated in the IC community, but I am absolutely convinced it’s an imbedded infection. Elmiron won’t cut it. I have a wonderful doc who does direct badder ANTIBIOTIC instillations. Ladies get a PCR test done! All of my regular cultures are negative but pcr showed super high load kleb and e facealis. Had this for a year. Instillations finally helping bc my Kleb is highly resistant. We don’t have bladder pain for no reason. It’s likely bacterial in nature.

[@susanarodriguez1675]

I'm controling the terrible problems with IC. I'm taking 1 gram of L-ARGININE, every night before bed, on empty stomach. I am able to sleep much better.

[@cheryldipretoro7282]

I also had bladder installations four times. At first, the pain was awful, but then about 4 days later i was much more comfortable after the first 2 times. My doctor also ignored my level of pain. It got to the point i was tied to a heating pad and tylenol, which wasn't all that effective. I am now on Norco and am looking into other options as i have gotten progressively worse. I hope you are doing better now.

[@rebeccamiller2209]

I just had my first installation, and im in so so much pain. Im feeling worse than I was before. 😢

[@stregalilith]

I can't believe they're still doing this to people. This is a horrendously painful procedure and not anywhere near effective enough to make it worth it. DMSO is an industrial solvent that destroys the bladder lining. The proper cocktail is Heparin, Marcaine and Solu-Cortef through a small catheter drenched in Lidocaine. Even done this modern way it's not pleasant but it provides relief if done properly and often enough. I'm so sorry you were put through this. There is no excuse for this. We don't use leeches anymore and we shouldn't be using DMSO. Nor should anyone be taking Elmiron systemically because it causes blindness.

[@DontSearchForMe-yq6tt]

My mother complained of the lidocaine - preferred the regular lubricant. I'm getting mine tomorrow and will be asking for no lidocaine. I can imagine that increases the difficulty to urinate.

[@yarbie35]

I feel you. The last one that I had made me suicidal the next day because it was so painful. I did DMSO and was in so much pain after. Elmiron caused my hair to fall out

[@lynnseysmoker5172]

Was the burning in bladder or lower down like urethra area?

[@conniecanterbury-d4e]

when your bladder is catherized it will hurt and burn for a while after its took out.. i have been suffering from intersistal cystitis for many years now .. my dr goes into my bladder every 6 months to a year by surgery to put meds in my bladder .. it really helps..

[@nishak925]

Thank you for sharing! I came across your page as I have had this painful condition for almost 3 years. I am at my wits end and willing to try a bladder install and was trying to look for answers. I hope you are feeling better :( this is an awful condition

[@sukanyac5263]

I wonder if there's a support group or forum to talk about these things. My mum is set to go instillation in day or two. No DMSO it's cocktail with Heparin.

[@nancydial5156]

I'm going to have this done in April

[@nancydial5156]

I'm having done in the hospital and I will be put to sleep

[@arshiyakhatri1900]

How was it?

[@arshiyakhatri1900]

I’ve been asked to get it done next month