Interstitial Cystitis: Anyone have symptom relief tips?

I was found to have IC (after a year of on/off UTIs & much pain). At that point, I was put onto methenamine (twice a day) and over the counter D-Mannose (twice a day). It took several weeks but finally I started feeling much better. I was on those two meds for three years when my kidney labs showed that I have 3a stage chronic kidney disease. Upon research, I found that the methenamine is hard on our kidneys, so we cut the methenamine down to only 1/2 once per day (pm) and cut the D-Mannose to once per day (am). That was over a year ago now since the meds were cut down and I'm still pain-free. I have not had a UTI since 2019. I hope you're able to find some relief from IC pain. It is horribly debilitating.

I use an allergy drug, Loratadine, to help with the bladder spasms.

I've had success with the Femetry supplements. They were formulated by several doctors who treat IC and they haven't made me flare at all! They've helped me control my urgency, frequency and the Bladder Acid Control tablets have enabled me to work problem foods and beverages back into my diet, which is amazing. Feel free to message me if you have any questions or want to know about my experience with them.

I've had a mild case of IC for 18 years and here are the things that have helped me the most...
Meditation
Pelvic floor physical therapy
Pelvic floor stretches
Femetry supplements

I’d LOVE to know
More about those supplements

I’ve had UTIs all my adult life, as well as bilateral kidney stone surgeries. Conscious hygiene as well as 2x day Uribel tablets made the difference! Originally I had the prescription drug prescribed by a prominent Urologist, but he has retired and so my primary physician writes rx now. It is not covered by any insurance, but I get discounts by researching the many drug discount offerings on the Internet.
I have taken this drug for about 25 years with minimal UTI episodes because it keeps the bladder clean from bacteria. It also helps to fully empty bladder of urine.
This has worked for me, maybe you 2?

When I have an unexpected flare there's nothing that really helps me in the moment besides drinking water and trying not to stress. I've had lots of luck with the Femetry supplements in helping to ease my overall symptoms. I went through the original trials for the 3 step supplements and they have helped me most with frequency and urgency. Plus there's acid control tablets that combine calcium glycerophosphate with sodium bicarbonate to reduce acid induced flares. There's also a drink mix powder that helps combat UTI's and restore your microflora. They are worth trying out! I've attached a photo of them for you.

Four months ago what I thought was chronic UTIs turned out to be the dreaded IC/CBPS. Though I have Mayo PCP, Mayo will not refer to Urology, only taking special cases. Saw a couple general Urologists who said scope 'looked fine', do PT and check back in in 2-3 months. I am doing Pelvic floor PT and scrambling to find what works, what triggers. I can't tell you how frustrating this is... feel like I'm battling it alone, just me and Chat GPT and my husband who is growing tired of it all... keeps talking about the anxiety piece. Easy for him to say! I understand PT takes up to 12 weeks to see results. I am staying away from all the no-no's (not after learning the hard way with a glass of red wine, sending me into a tailspin for a week.) I still have occurances of pain and frequent urination that keeps me up often at night, as well as not feeling myself during waking hours. I just want to feel NORMAL again. Chat GPT has me taking Cystoprotek which has Quercetin to repair bladder lining. Anyone heard of this?? For me, only tylenol takes the edge off- ibuprophen does nothing. Verdict is still out on anihistamine. Then ice, not heat. Is it originating from sacral area/nerve pain? Is it the GAG layer? Is it just a pelvic floor issue? And how does one know?? I feel desperate. Any suggestions that worked for you, I welcome.

Instills provided significant relief. They are a bit of a hassle as you need several weekly treatments/ I had 8. Then if having relief you can reduce treatments. I’ve gone several months at a time with no symptoms other than vaginal atrophy which it cannot treat. I recently started treatments again after getting a bacterial uti. That can only be treated with appropriate antibiotics, but can flare up IC symptoms. I am fortunate to have a kind, caring urogynocology practice.

@dks I'm having a really hard time with bladder spasms now, and I'm taking d-mannose, too. People have to be sure it doesn't contain any additives. I take the powder you mix in water 2X day. That seems to work better for me than capsules. Something I haven't seen mentioned is Kegel exercises. Before I started doing them, I couldn't make it to the bathroom in time, and the urine flow would begin. Then, I had clean up to do. This happened well before I had any pain at all. I chalked it up to getting older. The Kegels didn't help with pain, but they did help with holding my urine till I was on the toilet. And they stopped the bladder spasms after emptying my bladder.

D-mannose can help us avoid a bladder infection that might go unnoticed during a flare, as well as giving some of us, at least, some relief from the flare, itself. Good luck to everyone. This thing steals our life.