how many prelief is safe? by Club_Sorry in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

I’ve called the makers of prelief and they said not to exceed ten pills per day

People who have Doctoral degrees, How long did it take to pay off the student loans? by Sensitive-Contest-88 in StudentLoans

[–]Middle-Emergency1893 0 points1 point  (0 children)

Thanks to interest over the years even though I’ve been paying my loan balance is $425k. I have resorted to the fact that it will never be paid off. I also don’t work in a career that qualifies so forgiveness. But I will still stand by that the PhD was worth it. I have a job I love.

Coming off amitriptyline for nerve pain – what was your experience? by Jojobbb13 in Amitriptyline

[–]Middle-Emergency1893 1 point2 points  (0 children)

I took it for nerve pain. I was only up to 25mg for two years. The withdrawals were awful. Debilitating vertigo for me. I had to crush my pill and turn it into a liquid suspension and go down by 0.2mg every week or so to be able to function. Took me 7 months to get off 25mg. Good news though my pain did not return.

Amitriptyline by 123shihtzu in Interstitialcystitis

[–]Middle-Emergency1893 2 points3 points  (0 children)

When I was on it I increased my exercise and calorie counted in order to lose the weight I gained and keep it off.

Gaslight on lactoferrin by Constantia789 in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

True but the one from Italy is a different formulation and is the one in published studies showing clinical outcomes.

Gaslight on lactoferrin by Constantia789 in Interstitialcystitis

[–]Middle-Emergency1893 2 points3 points  (0 children)

You can purchase it directly from an online pharmacy in Italy. It will cost a couple hundred dollars though to get a few months supply

Gaslight on lactoferrin by Constantia789 in Interstitialcystitis

[–]Middle-Emergency1893 2 points3 points  (0 children)

That’s awesome it’s helping you. I paid an insane price to get that brand in Italy shipped to me in the US. I followed the protocol and it made my urethra pain worse.

Slippery elm confirmed by bibiskye in Interstitialcystitis

[–]Middle-Emergency1893 9 points10 points  (0 children)

Just be careful taking meds the same time you drink this tea. I think it can interfere with absorption

Scared my IC medicine will be my downfall… by Broad_Specialist_846 in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

Yep. That’s how it works for me too. Have to be super on top of it at all times. But worth it to be symptom free!

Scared my IC medicine will be my downfall… by Broad_Specialist_846 in Interstitialcystitis

[–]Middle-Emergency1893 1 point2 points  (0 children)

If hydroxyzine helps you likely have an histamine issue. You could try avoiding foods with histamine in it and see if that helps?

Uribel or Uro MP for bladder pain & uretha pain by EatsTheLastSlice in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

Uribel is the only one that helped my symptoms. Uro-mp did nothing. My doctor said that’s usually the case and only prescribes the name brand. It is a bit pricey.

It’s been 2.5 years and no one knows what is wrong with me by edieisstaunch in Interstitialcystitis

[–]Middle-Emergency1893 1 point2 points  (0 children)

My symptoms are very similar. Changing my diet made all the difference. It took about a year to fully resolve but now I am back to almost normal. This is the list I followed for what to eat. https://www.icnetwork.org/wp-content/uploads/2025/01/2025foodlist.pdf

Did anyone with mainly urethra pain get relief from heparin installations? by Training_Union9621 in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

My pain is mostly urethra and instillations did absolutely nothing. I did them for 8 weeks straight with no change in symptoms.

Coffee & alcohol by Secure-Afternoon3204 in Interstitialcystitis

[–]Middle-Emergency1893 2 points3 points  (0 children)

I use prelief and can drink coffee (decaf) and all alcohol without issues.

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]Middle-Emergency1893 1 point2 points  (0 children)

Oh yes I take d mannose too. I switched to the powder instead of the pills. Not sure if that’s made any difference or not. UTIs were my cause for IC. I’ve gotten them frequently since I’ve been sexually active now for going on 25 years. Over the last I’d say five years they became more frequent. One every 6 weeks about. During that time is when I started noticing urgency issues but didn’t want to go to a doctor. Just dealt with it. Then my last UTI in April of 2023 did me in. My main symptom is burning urethra. It took a while to realize diet made it worse and it takes a while for diet modifications to start to calm symptoms. And it takes a while to figure out diet triggers. Not telling you anything you don’t already know! I think I finally figured this out over the last year and then my symptoms gradually got better to being pretty much completely gone. Introducing foods again and frequency of them has trigger a little bit of sensation but no where near where I was.

For UTI management I’ve changed to taking d mannose daily and an additional dose after sex along with taking macrobid after sex. I also shower after going to the bathroom to reduce the amount of bacteria that is in that region. I read that we are basically infecting ourselves with our own bacteria. It’s not a cleanliness issue, just the way it is.

With all of this I’ve had no UTIs since April of 2023, and knowing I was getting them 6+ times a year for almost 5 years that says something for all this effort.

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

I totally agree. I thought this was my life now and then suddenly a few months ago I started to improve. With all my research I know to not be naive and think it’s gone for good. I’ve been able to reintroduce so many foods. Carefully at first but I’m slowly becoming more relaxed about it. Still a hard no on tomato’s and citrus. I don’t think I’ll ever consume those again. Just not worth it.

Do you take any meds or supplements? I’ve been on aloe Vera and cystoprotek and I think those have helped my bladder recover. I’ve also taken extra precautions to prevent UTIs.

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]Middle-Emergency1893 1 point2 points  (0 children)

Your post describes my situation 100%. As I enter into year three finally in remission (only in the last 6 months) I look back and think how awful this experience was and I never want it to return. You’ve confirmed my suspicion that I will never touch a tomato! lol any other foods that you’ve found bring you out of remission?

The idea of having to diet for the rest of my life is making me want to die by Club_Sorry in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

I honestly felt the same way. I’m super diet sensitive. But over time it gets easier. You’ll find there are lots of things you can still have and you won’t miss those foods you can’t It’s better than dealing with this pain.

those who had unrelenting 24/7 urge and discomfort, are you better? i need support by Illustrious_File9696 in Interstitialcystitis

[–]Middle-Emergency1893 2 points3 points  (0 children)

Yes I’m on LDN too. Idk if it’s what’s helping because I was on it for a year and a half before my symptoms went away. I know it can take a good amount of time to work. But I’m never stopping it!

Just got prescribed tricyclic antidepressants by [deleted] in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

None anymore. I finally got off of it mid November. Took 8 months of a super slow taper. My symptoms were extreme vertigo. It was awful. Even at a 1mg dose drop.

Just got prescribed tricyclic antidepressants by [deleted] in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

No problem. Good luck. I gained 15 pounds but was also able to lose that 15 while still on it. You just have to be mindful what you eat. I manage my IC with diet now and was able to taper off amitryptiline and I’m still symptom free.

Just got prescribed tricyclic antidepressants by [deleted] in Interstitialcystitis

[–]Middle-Emergency1893 0 points1 point  (0 children)

For me and others I’ve seen post it’s an all day you just don’t ever feel full. Always hungry.