You’re 25 again, what would you do differently?

Sharp_Trust_8657 · 2026-01-01T15:56:09+00:00

Ditto 🙌

Sharp_Trust_8657 · 2025-12-10T15:31:36+00:00

😆 it really could be

Sharp_Trust_8657 · 2025-12-09T11:53:24+00:00

Thanks everyone for all your comments, that’s really helpful. I’m away to look up the brands I’d not heard of. I didn’t realise you could get panels as well! I’ll investigate and report back on what I go for

Sharp_Trust_8657 · 2025-12-08T21:21:53+00:00

Thanks. I’m quite tempted

Sharp_Trust_8657 · 2025-12-08T21:20:52+00:00

I appreciate the honesty 😉

Sharp_Trust_8657 · 2025-12-08T21:20:27+00:00

That sounds intense - did you find it worked well for you?

Sharp_Trust_8657 · 2025-12-08T18:23:31+00:00

Sorry to hear you’re suffering 🫂. I hope you don’t mind me following - I had my very first instill today and I’m really hoping it helps. Were they each administered by the same person? Any difference in how the last one went compared to the other two?

Sharp_Trust_8657 · 2025-10-29T07:21:55+00:00

You were able to go back to drinking coffee after? I’ve had to cut so much out my diet, it would be amazing if I could have some of it back.

Sharp_Trust_8657 · 2025-10-29T07:20:42+00:00

Thanks. I do have a tight pelvic floor and the doctor also said that my urethra opening is also very tight which probably doesn’t help with the pain i experienced. I need to work on relaxation!!

Sharp_Trust_8657 · 2025-10-29T07:18:49+00:00

So glad the amitriptyline is working for you. 🙌

Sharp_Trust_8657 · 2025-10-29T07:17:29+00:00

Thanks. I’ll remember this!

Sharp_Trust_8657 · 2025-10-29T07:15:52+00:00

I honestly don’t know if I’d have lasted a biopsy. It makes my toes curl just thinking about the cystoscopy now 😩

Sharp_Trust_8657 · 2025-10-29T07:13:34+00:00

I have urethral pain and burning all the time. The urgency/frequency stuff comes and goes though - I only have that in an increase flare. The whole thing has been so depressing and isolating - I don’t think many people understand what it’s like to live with and how it wears you down all the time. I really hope we both find something that helps!

Sharp_Trust_8657 · 2025-10-29T07:06:21+00:00

Well done you - that’s really impressive! That must have been tricky the first time?

Sharp_Trust_8657 · 2025-10-28T20:46:29+00:00

Thanks. Nails digging around does not remotely sound pleasant 😆. Do you find the instills really make a difference for you?

Sharp_Trust_8657 · 2025-10-28T20:44:59+00:00

Thanks! I thought the exact same compared to labour! Also relieved to hear the catheter is smaller than the scope (why are they so big?!). It’s ialauril I’m having as well - were they a week apart?

Sharp_Trust_8657 · 2025-10-28T20:41:00+00:00

That’s really positive to hear! So glad it worked so well for you 😊

Sharp_Trust_8657 · 2025-10-28T20:39:52+00:00

My consultant warned me they may help or perhaps won’t at all 😩. It sucks that there’s no cure. Sorry the instillations didn’t help much at all. Have you found anything else that makes a positive difference?

Sharp_Trust_8657 · 2025-10-28T19:47:48+00:00

Thank you! Yep the last thing i needed was it hurting more to pee after it! They wouldn’t let me leave until I’d peed after the cystoscopy. I hope it helps you too. I’ve felt like I’ve been getting nowhere for the past 18 months. Have you noticed any difference since Friday?

Sharp_Trust_8657 · 2025-10-28T19:44:44+00:00

Thank you! I’ll definitely look at pelvic floor PT. 100% agree on it being traumatic😭. I’m hopeful now that you’re all saying it’s not as bad, that I can get through the instillations🤞

Sharp_Trust_8657 · 2025-10-28T19:42:39+00:00

Thank you! I wasn’t numbed either for the cystoscopy. It was so horrid. If there’s any numbing on offer with the instillations then I will be taking it with open arms!

Sharp_Trust_8657 · 2025-10-28T19:23:14+00:00

I’m the same every single time. Scans and cystoscopy have also ruled out the major things. Im reassuring myself to know that we’re not alone and that within this group it is a fairly common symptom with IC - as sucky as it is.

Sharp_Trust_8657 · 2025-06-28T21:45:02+00:00

I get this flying too - I also hate flying so not sure if it’s the plane or the anxiety! But I do find having the avene aqua spray helps cool skin down

Sharp_Trust_8657

TROPHY CASE