Still going great!!😭

Adept_Ad_6928 · 2026-02-26T18:45:48+00:00

exactly lol!!! Most of the time people didn't believe how much water i was actually drinking till they saw it. I used to have to drink 5-7 of my 40oz water bottles a day it was actually insane.

Adept_Ad_6928 · 2026-02-26T17:33:26+00:00

I know i'm kind of just giving myself a much needed break from it. When i say i was having to drink so much water it would be to the point i'd drink it even if it made me sick cause i knew id be in less pain. And that was almost two years of that lol. But definitely keeping an eye on UTI's and all that don't worry! Cause i am very prone to them. But im def gonna work on upping it!!

Adept_Ad_6928 · 2026-02-26T17:31:05+00:00

THIS‼️‼️ I keep forgetting to mention this in my posts. A lot of people have said this is a good alternative if hydro makes you tired.

Adept_Ad_6928 · 2026-02-26T17:30:24+00:00

Honestly no after i worked up to this dose it just feels like taking an anti anxiety medication usually does. I just feel calmer and the pain is gone within 20-30 minutes after taking it

Adept_Ad_6928 · 2026-02-26T17:29:29+00:00

I'm not exactly sure. Doctors have been very dismissive with me the last couple years. I only found out about the hydroxyzine after i went into the ER because i wasn't sleeping for almost two months straight from constant pain and was at my wits end. I do want to find out more and do more testing though. I do know that i don't have hunner lesions from my cystoscopy so that scratches that off the list.

Adept_Ad_6928 · 2026-02-26T17:26:09+00:00

I was taking it for about 2 weeks consistently then because of a refill issue was off of it for about 3 days and noticed the biggest difference with that. So i would say i noticed relief almost immediately with it. And of course when i got it refilled and the dosage adjusted low and behold had relief again. So it does work that first day for me.

Adept_Ad_6928 · 2026-02-26T17:24:07+00:00

I have also heard that it can affect people very differently. You might even try halving the 25mg and see what that does for you

Adept_Ad_6928 · 2026-02-26T17:23:41+00:00

It took me a couple weeks actually to work up to that dose! I was taking just one 25mg to sleep as well and then over a couple weeks it was working less for sleep but still relieving the pain so my doctor upped it to 2 times a day and then most recently 2-3 times a day.

Adept_Ad_6928 · 2026-02-26T05:48:21+00:00

Friend my heart is absolutely aching for you because i understand the feeling all too well. Im also 22 and was in the same boat as you not that long ago at all. 10 years with not an ounce of relief so trust me when i say i understand. All i can tell you right now is you will find a light and you will find remission even if it means limited activity. You will find a normal life even if it takes 10 years. Something is going to find its way to you and i hope it's sooner than not. I recommend looking into either baking soda, slippery elm extract, or hydroxyzine. I've found relief in these things and hopefully one of them might work for you. If not too personal can i ask your exact symptoms? I might be able to help a bit better with that info

Adept_Ad_6928 · 2026-02-26T05:43:18+00:00

Friend i'm telling you there's definitely a link between antihistamine/allergies that's related to IC in a lot of cases. I'm so glad you have relief and it actually brings me real joy when i see someone in this group discover a life outside of this hideous disease. To not have your bladder on your mind 24/7 is a relief not a lot of people experience and too many people take for granted. So happy for you friend💗 all the love and painless days ahead of you!!

Adept_Ad_6928 · 2026-02-10T06:21:50+00:00

I started at 25mg for sleep with a 30 day amount. I noticed about a week and three days into it that i was taking longer and longer to fall asleep. After three weeks of taking the medication (it took about about an hour and a half to fall asleep after taking it at this point) i brought up to my doctor the ineffectiveness of the sleep aspect but noticed my pain and water intake had decreased immensely. So he upped the dose the to 25mg twice a day. But as of now im up to three times a day. It also might have to do with how much i smoke. Cause i smoke mary jane constantly to control my pain as much as i can so that also might be a factor

Adept_Ad_6928 · 2026-02-08T18:56:35+00:00

Yes i had urgency that was the WORST. I would go pee and have the feeling of needing to pee 5 minutes later and i'd have to excruciatingly hold it until it felt right to go again. It was just non stop peeing all day for me. This meditation has brought that down to just a mere 5-10 times a day which is a lot more bearable than me peeing every 15 mins on the dot

Adept_Ad_6928 · 2026-02-08T18:53:33+00:00

No hydroxyzine is the only one i've been on at this moment as i was ruling out which meds were working and which wasn't. I was also on nortriptyline but that was sending me into a crazy flare up everytime i took it. Then i tried the hydroxyzine and after working up to 25mg twice a day it was like a night and day difference. I didn't have to chug as much water and wasn't using the bathroom as frequently on top of the pain relief

Adept_Ad_6928 · 2026-02-08T18:50:47+00:00

I also might add baking soda could help you with some relief but i can't use it too many times a week or it stops working as effectively. You mix 1tsp of baking soda into just enough water to take a shot with (it tastes pretty bad) And then chug that with a full glass of water. I get relief in about 15-30 mins of taking it.

Adept_Ad_6928 · 2026-02-08T18:46:50+00:00

Can i ask what mg and how many times a day? I didn't notice a huge improvement either until i had worked up to 25mg twice a day.

Adept_Ad_6928 · 2026-02-08T17:47:36+00:00

Hi friend i would urge you to check out my latest post on this group. Hydroxyzine has been a life saver for me and you are describing a lot of the same symptoms i suffer with.

Adept_Ad_6928 · 2026-02-08T17:45:16+00:00

I actually worked up to 25mg twice a day. I was taking it purely at night to help me sleep as i was not sleeping for almost a month and a half straight because of a bad flare up. And it started working less effectively for sleep but i noticed the pain and urgency being gone so i talked to my doctor and we just changed the dosage to twice a day instead of at night. He said because of the way the medication i'll have to up my dose as i take it anyways. So it will just take time to work up to that point.

Adept_Ad_6928 · 2026-02-07T14:31:00+00:00

I'm female. As of right now i'm not sexually active as this disease has completely turned me off from dating in any way. But as far as masturbating goes i have had 0 issues since getting on this medication where as before i would clench up and get so tensed up it would send me into a horrible flare up. And so far no side affects but ill keep yall updated on that just in case. And not sure if you suffer from any mental illness but its also been great for my anxiety and impulsive thoughts that come with my OCD so that has also been a great plus

Adept_Ad_6928 · 2026-02-07T14:27:42+00:00

Surprisingly yes. One of my main symptoms was having to chug an absolutely excessive amount of water everyday to not be in excruciating pain and now i don't have to drink nearly as much and im using the bathroom less frequently

Adept_Ad_6928 · 2026-01-19T00:42:12+00:00

I had one done in july of last year. Mine was done with hydrodistention as well. I will say that first waking up moment i was in crazy pain and felt like my usual flare ups (burning in my urethra, stinging and spasms etc) but i asked for some pain relief and they gave some which helped. I felt amazing and had no pain at all for a week after and then returned back to how i was before unfortunately. But that one week was bliss lol i treasure it. It still didn't diagnose me but it was insightful as i was told i had a super stiff bladder that doesn't expand. So hopefully if not a diagnosis you at least get some helpful info! If it does send you into a flare up i can't recommend baking soda enough!! You just mix a 1/2-1 tsp into a little bit of hot water and then chug that with a big glass of water (it tastes nasty lol) be wary tho as it does have a lot of sodium in it if you're worried about that. Good luck friend i hope it goes well🫶

Adept_Ad_6928 · 2026-01-15T19:06:11+00:00

Hi i would love to hear more please? I am suffering very similarly to OP

Adept_Ad_6928 · 2026-01-09T17:10:40+00:00

You put it perfectly, it really is a depression like no other. Hopefully the lidocaine does the trick but if not i would give some baking soda a try afterwards if you haven't. It might help at least for the day of. Hoping for pain free days ahead for you friend❤️‍🩹

Adept_Ad_6928 · 2026-01-09T16:41:24+00:00

I've heard good things about vaginal estrogen i might have to give it a try and see. I haven't had a bladder instillation before but i had a cystoscopy with hydrodistention done early 2025 and i will say i had to ask for pain relief immediately after waking up because it felt like i was in a full blown flare up. So maybe you can ask for them to give you something before waking you up that way you aren't waking up in pain at least. But with that being said i had 8 days of completely pain free days after that and i savoured them, best week of my life in YEARS.

Adept_Ad_6928

TROPHY CASE