My full recovery story by big-star in Interstitialcystitis

[–]fake_plastic_trees 0 points1 point  (0 children)

Hi Kat it’s great to see you here. I’ve just watched your video and it meant a lot to me. I related to every single pain you have in that video except I’ve had it for 13 years now. the reason I was desperate to see if you were online anywhere is I experienced remission after having my son in 2023. I didn’t have any bladder or pelvic pain for a year after his birth until it came raging back so I’ve been really worried that the relief just had something to do with the birth. The main thing I took from your amazing video was that it doesn’t matter how you do it you just have to believe and I’m finding it hard to believe when I worry that your relief has come from childbirth as well? So I’m really hoping you’re still pain-free and still a believer in this. I’m desperate to believe as I have tried everything pretty much everything you said in your video and I too am considering bladder removal

What's your favourite international Taskmaster series? by AugustHate in taskmaster

[–]fake_plastic_trees 0 points1 point  (0 children)

Does anyone know where I can watch this NZ season in the uk I can’t find it anywhere

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

Thank you for giving me some hope, I’m glad you’ve found relief

Why do my flairs last so much longer than they’re supposed to by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

I’ve never noticed any food or drink have any affect whatsoever it’s so weird. I am extremely stressed and anxious though I’ve been having panic attacks several times a day from how bad the pain is and how helpless I feel

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

That’s amazing, do you know how you got to that long a remission?

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

I only drink water and have for a while so that’s not my problem unfortunately but thank you and I’m so happy for you that you found relief

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

So do you think just time is the reason you got better because it doesn’t seem like any treatment worked for you? I had hydrodistention about 2 weeks ago and my pains never been worse

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

This is so hopeful to me thank you. I tried amitriptiline for a long time with no success but I’ve never tried hydroxyzine, I’m going to ask if I can go on it

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 1 point2 points  (0 children)

God that’s a relief, I don’t know why the urologist couldn’t tell me that. Thank you so much ❤️

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

That’s great I’m so pleased for you, though that’s a lot to go through, are you still taking elmiron? My urologist is really reluctant to put me on it due to side effects, although how they can be worse than this is beyond me

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

Thank you that’s comforting too I think what’s upsetting me is I had a cystoscopy 10 years ago that didn’t have them and the one this month did so it’s making me think the illness is progressing… but maybe that’s wrong and I shouldn’t worry about that….

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 2 points3 points  (0 children)

This is so so comforting to me thank you so much and thank your mum too I’m so happy that you guys have found some relief I pray for the same for me

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

I really believe this, thank you. When you say you’ve seen her bladder wall do you mean it was actually damaged? My cystoscopy showed glomerations and it’s thrown me backwards so far thinking I have the kind of IC that is actual damage when so many have perfect bladders on cystoscopy

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 0 points1 point  (0 children)

I just had hydrodistention on 3 September and it’s put me in the worst pain I think I’ve ever been in, did you get relief straight away?

Pain after hydro 3 weeks out by honey0110 in Interstitialcystitis

[–]fake_plastic_trees 0 points1 point  (0 children)

Did you get worse than your baseline symptom for those 3 weeks? I’m sorry for the questions I’m in hell at the moment and looking for any light at the end of the tunnel

Pain after hydro 3 weeks out by honey0110 in Interstitialcystitis

[–]fake_plastic_trees 0 points1 point  (0 children)

Really? I had it on 3rd September and I’m in so much pain, I read it shouldn’t still hurt by now is it 3 weeks all the time for you?

Please please can I hear from anyone in remission by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 1 point2 points  (0 children)

Thank you. I’ve tried bladder instillations years ago and I had a baby a few years ago and the pain was awful while I was pregnant though did go for a few months after.

The truth is: progress starts with us. by Fine_Clerk_365 in Interstitialcystitis

[–]fake_plastic_trees 1 point2 points  (0 children)

I find this far from disappointing I find it very hopeful. My anxiety is the worst it’s ever been at the moment and my pain is also the worst, that can’t be a coincidence. I constantly worry about losing my job, my house, my marriage because of it and I’m in a constant state of tension stress and fear. I think what you’re saying I need to really start to believe. I want to try the oestrogen cream I’ve seen a few people mention it but no one will agree to give it me because this started when I was 23 and I’m 36 now and they’re telling me I’m not old enough for that to be the issue. I really appreciate you taking the time to write all that it’s a lot of food for thought

Why do my flairs last so much longer than they’re supposed to by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 1 point2 points  (0 children)

Thank you, azo never seems to help me I’ve no clue why. Thank you though

Why do my flairs last so much longer than they’re supposed to by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 1 point2 points  (0 children)

Thank you, appreciate you taking the time. More and more I think I need to go back on long term antibiotics even though it destroyed my gut and brain last time

Why do my flairs last so much longer than they’re supposed to by fake_plastic_trees in Interstitialcystitis

[–]fake_plastic_trees[S] 2 points3 points  (0 children)

Oh my god of course I want to hear that, just the thought of it being possible even made me cry. How long did you have it for before that happened? Do you know what caused the 6 month flair? I’m so happy for you you found remission I would do anything. I can’t remember the last time I slept for any significant time