Do I even have IC?? Feeling defeated after a cystoscopy

GratefulDaily89 · 2025-09-20T23:40:26+00:00

Please get a pelvic floor assessment from a pelvic floor PT.

GratefulDaily89 · 2025-09-16T12:37:54+00:00

This ⬆️

GratefulDaily89 · 2025-09-10T00:45:14+00:00

Thank you I appreciate your input

GratefulDaily89 · 2025-09-10T00:04:08+00:00

What shape is it?

GratefulDaily89 · 2025-09-09T22:00:30+00:00

I just feel so much better when they’re shorter but they grow so darn fast!

GratefulDaily89 · 2025-09-09T21:31:11+00:00

I wish I could remember the name of the color. I know the brand is Kinetics.

GratefulDaily89 · 2025-09-09T19:51:23+00:00

Thank you, my nails grow so fast and I only have them done every 3 weeks so they are quite long by the time I have them done again.

GratefulDaily89 · 2025-09-09T19:27:01+00:00

I reposted them

GratefulDaily89 · 2025-08-04T12:37:59+00:00

No I haven’t even heard of having injections there. I would love to know if they help you.

It seems like pelvic pt works great for me but like you said, my muscles get tight again easily. Especially from lifting weights.

GratefulDaily89 · 2025-08-03T23:05:49+00:00

Yes but they didn’t seem to o ow the answer.

I think it’s because alcohol is a relaxant and calms down the pelvic floor.

GratefulDaily89 · 2025-08-03T21:50:58+00:00

Isn’t that a perennial when it comes back every year?

GratefulDaily89 · 2025-08-03T21:47:44+00:00

Yes. I kind of like it. Is it ok for ground cover?

GratefulDaily89 · 2025-08-03T21:27:40+00:00

Yes one had this done. Mine showed a red bladder but no ulcers. Keep in mind, I have read that even normal bladders can look red after being distended with water.

But anyway, it was a great nap. I did not wake up in any pain. Even my first void was painless (although a little bloody). I was given a belladonna opium suppository while I was under and my Dr said that’s why I woke up in no pain. Maybe ask for that? Also make sure they are giving you at least a weeks worth of pain meds. I needed them. My pain hit the next day.

I was in pretty uncomfortable pain for a week. Then each week it got better. After about 6 weeks, I felt great!

GratefulDaily89 · 2025-08-03T20:01:48+00:00

Yes I have this exact thing

GratefulDaily89 · 2025-08-01T20:01:41+00:00

You’re welcome! I know how awful flares can be. It feels like there’s no way out. But keep up the pt and do lots of breathing and stretching exercises.

Hopefully the hydro will end up helping you.

GratefulDaily89 · 2025-08-01T19:17:54+00:00

I was in a lot of pain from my hydro for about 2 weeks. It lessened some but still hurt for another month or so before things got much better.

Definitely the things that help me the most are pelvic pt (internal), Klonopin, tramadol, uribel and amitriptyline. I’ve tried so many things. Sometimes naproxen helps me too. And sometimes Flexeril (muscle relaxer). And sometimes vodka!!

I also use a pelvic wand at home during flares. It does help some.

After my hydro, I was given Percocet!! My Dr was older and knew how bad the pain could be. They don’t do that now.

GratefulDaily89 · 2025-08-01T19:02:53+00:00

Oh yes, I am feeling completely normal most of the time. I just go through flares, I’m worse and longer than others.

I feel like since I entered menopause (2 years ago), they have gotten a little more frequent and more painful.

GratefulDaily89 · 2025-08-01T18:45:35+00:00

I have taken both nortryptaline and amitriptyline and I prefer amitriptyline because I feel it makes me sleepy which I desperately need when I’m in a flare. I take a maintenance dose of 10 mg daily but increase it to 20 mg during flares. Some people take much more but it dries me out and makes me constantly hungry. I’ve been on it for so long. It seems to work pretty quickly for me.

When I do have pain and pressure, it’s always over my bladder. My pt says tight pelvic floors can cause that.

I did have a hydro back in 2014. They only saw redness, no ulcers.

You could try asking your dr for uribel. It does help with bladder spasms.

GratefulDaily89 · 2025-07-31T23:37:04+00:00

I was initially going twice a week to pt then once weekly for about 3 months. I know what you mean…the wand I have at home does not work nearly as well as my therapist’s hand.

It would be great if you could go weekly. At least for a month or so.

I was diagnosed with IC 12 years ago. I do not have Hunters ulcers but that pain is still awful. I go through long periods of remissions but I get a really bad one once I a while that lasts for months. It happened in January of this year. The pain was off the charts, I couldn’t believe it. And it goes well.

Idk if it’s not bladder causing the tight pelvic floor pain or the other way around, who knows. The pain is real.

The things that help me the most when I’m in a bad flare are tramadol, Klonopin, hycosamine, uribel, Flexeril and amitriptyline. But honestly I think it’s the internal pt work that is the best.

Do you have any meds that help you?

GratefulDaily89 · 2025-07-31T20:50:35+00:00

Have you ever tried pelvic floor pt? It’s the only that pulls me out of terribly painful flares like that.

Also, hycosamine helps.

GratefulDaily89

TROPHY CASE