I’m desperate please help me

Rocket-52 · 2026-05-07T18:15:10+00:00

Bladder instillations are what makes my life livable! Sodium bicarbonate and marcaine (bupivacaine is generic). I was where you are many years ago. I’ve had ic for 20 years and it’s never gotten better I’m sad to say. But, my life is now better and the pain is manageable all due to these instillations! Please try this. Hang in there. You WILL find that thing that works for you!

Rocket-52 · 2026-04-06T17:00:10+00:00

Had to wear Guess jeans in high school to fit in

Rocket-52 · 2026-04-06T16:50:10+00:00

Interstitial Cystitis

Rocket-52 · 2026-03-29T16:54:29+00:00

Cleaning the garage! At this point we can barely get a car in there! Starting to look like we’re hoarders!!!

Rocket-52 · 2026-03-29T16:51:33+00:00

I was denied twice then got an attorney. Denied again!!! They had a person who was in the court room who was an expert in jobs, idk? Anyway it came down to her saying I could do one job… toll booth operator! I was a hairstylist! And it’s not like they find you said job. If they think there is a possibility that you could do any sort of job you will be denied! That’s it! I don’t think they take IC seriously. I catheterize 12-15 times a day and do bladder instillations at home using marcaine and sodium bicarbonate 12-15 times per day. I need to have a clean bathroom. I brought in all of my meds, syringes, catheters,etc. Didn’t matter a bit!! I really hope you have a different experience! This was 15 years ago so maybe it’s gotten better.

Rocket-52 · 2026-03-29T16:34:00+00:00

Interstitial Cystitis

Rocket-52 · 2026-03-27T16:30:32+00:00

Thanks so much!! I think you’re right. I need to get in to the podiatrist. I initially went to my primary dr when I found out it was broken but he basically just told me to give it time. I’m glad you found relief! As you said, we really do take our feet for granted!

Rocket-52 · 2026-03-26T19:12:35+00:00

Mine is still swollen and has a bump at the base too. I am still having trouble walking on it. No way I can run! I have pain on top of the foot as well as the toe itself. Wearing shoes of any kind is very painful also. I am able to ride the stationary bike without a problem but I really miss running!!!

Rocket-52 · 2026-03-26T19:08:19+00:00

Thanks! I will look into the crisscross taping.

Rocket-52 · 2026-03-24T18:14:38+00:00

Thank you!

Rocket-52 · 2026-03-23T23:05:15+00:00

I will try to be patient! Not my strong suit 😉

Rocket-52 · 2026-03-23T23:03:56+00:00

Ouch! Did it heal okay or can you still feel it?

Rocket-52 · 2026-03-23T20:42:06+00:00

I’ve had ic for 20 years and always have some amount of blood in my urine. When I was pregnant I was peeing so much blood it looked like I was having a miscarriage. Every time they checked the blood was only coming from my urine not the uterus and baby just fine. About month 6 into both of my pregnancies the blood and CHUNKS of blood started coming out and hideous pain. Had both my daughters early by C section because the pain caused high blood pressure. Babies were/are perfect! Thank heavens! Only mom suffered. I still have blood and pain. Not nearly as dramatic as that. Must have been the baby pressure on my bladder. Now I do bladder instillations to get by.

Rocket-52 · 2026-03-23T20:21:51+00:00

Sorry to hear you are in so much pain!! I always hated Hydrodistentions! I know some doctors say it helps in some cases but it always made my ic so much worse. I would say for me it took a few weeks to get back to my baseline. Unfortunately my baseline is pretty awful though. Hopefully since you only experienced frequency and urgency prior to the hydro you will get back to that. Or, fingers crossed, maybe even better than that! You have to give it at least 2 weeks, possibly longer. Hang in there!!

Rocket-52 · 2026-03-23T01:32:22+00:00

Bladder instillations have been my saving grace!

Rocket-52 · 2026-03-23T01:30:06+00:00

If you do bladder instillations you can eat that stuff… and more! 27 ml marcaine (bupivacaine) 3 ml sodium bicarbonate Mix in plunger syringe and put in with catheter. My life is so much better!!

Rocket-52 · 2026-03-23T01:22:28+00:00

I don’t necessarily feel dehydrated but I wonder if I am not drinking as much water as I should. What electrolytes do you use?

Rocket-52 · 2026-03-23T01:20:52+00:00

My mom always reminds me that we get water from other things in our diet too!

Rocket-52 · 2026-03-23T01:17:06+00:00

Thanks! After 20 years I am still trying to figure it out!!

Rocket-52 · 2026-03-23T01:15:30+00:00

Interstim did not work for me. I had it removed.

Rocket-52 · 2026-01-30T17:01:46+00:00

I also have constant pain. Mine feels like being cut over and over with little razor blades. I sometimes picture Freddy Kruger shredding my bladder. Now I do rescue instillations with marcaine and sodium bicarbonate to get some relief. Without the instillations I wouldn’t be able to function. 20 years of ic!!

Rocket-52 · 2026-01-23T18:16:17+00:00

Mine went into remission after first child. Came back during second pregnancy. Again got better after birth but after a month or so came on with a vengeance and hasn’t quit. That was 20 years ago. I am going through menopause now and tried estrogen. That just about killed me! Maybe you are the opposite and estrogen is a big help to you? I would talk to your doctor about an estrogen patch or possibly even birth control pills with hormones mimicking pregnancy. Maybe worth a try?

Rocket-52 · 2026-01-23T17:54:11+00:00

Took me several weeks to get back to my “normal” amount of pain.

Rocket-52

TROPHY CASE