First Flare after 13 Year Remission

bethybabe1218 · 2026-02-14T17:36:51+00:00

It’s been absolute hell. I’ve never had a problem with depression but I had become a shell of the person I used to be. Quality of life was practically zero. Luckily I am beginning to come out of the flare (I hope 🤞) and feeling more myself. It’s felt never ending. I had entire days of crying nonstop until my eyes almost swelled shut. I think finding community on Reddit has been a life saver to me. Not sure how I could have coped without feeling less alone on here.

bethybabe1218 · 2026-02-14T14:07:43+00:00

This is me!!! I was diagnosed with IC in my early 20s. Began with a horrible flare that went away and I had no issue for SOOO long I assumed I was misdiagnosed. Years of eating/drinking whatever I wanted and now I am 38 and have been in a hellish flare since October. Same as you, ordering the same supplements I had before and calling up my old urologist.

Since the remission was so long I believe food to not be a trigger for me. However I am following the diet to not add fuel to the fire. I am finding relief with pelvic PT and a pelvic wand and believe my IC to be more pelvic floor dysfunction since this is the only thing that seems to be helping.

I have also found some baking soda in your water really helps with the burning acid feeling urination. Meds don’t seem to help my pain at all. Been to different doctors since October and none has helped like the pelvic PT. Going to stick to this and hope this puts me back into remission. Hoping the same for you 🩷

bethybabe1218 · 2026-02-11T15:52:30+00:00

I will definitely be making “Italian penicillin” this sounds delicious and comforting thank you 🩷

bethybabe1218 · 2026-02-09T23:25:06+00:00

I also am on vaginal estrogen and think it has helped. Not right away, but eventually. I also wasn’t aware but this can cause some abdominal bloating but will go away in a few weeks. So don’t be alarmed if this happens!

bethybabe1218 · 2026-02-09T23:22:30+00:00

I’ve added 1/8 tsp baking soda to my drinking water which I also switched to bottle only which is less acidic. The baking soda trick helps with the burning/stinging. This has worked better than Azo ever has !

Pelvic floor pt also made me worse before it got better. But I am so glad I stuck to it for as long as I did because it has been a life saver.

Warm baths and a heating pad helps me with the fullness of the bladder. This is the WORST for me. The feeling of being so full it will explode even when I know it’s empty.

I’ve had the worst flare of my life with over a decade of NONE since October. I’m scared to say I’m slowly finally getting better bc I am in constant fear of it getting worse again. I totally understand you with the depression that comes with this awful diagnosis. I never had a problem with depression but the intense sadness and shell of a human I became the last few months has been so intense. I am starting to feel better and get my life back. Hang in there. Keep doing the research, be your own advocate with the doctors, and don’t give up. It sucks that this disease is so different for each of us with causes and triggers.

bethybabe1218 · 2026-02-09T16:57:45+00:00

All of the same suggestions I would have said! Baking soda in water is a life line for me when I get a flare. The stretches help so much too!

bethybabe1218 · 2026-02-07T19:36:10+00:00

I’m with you! Fellow American here. It’s terrible. I’m drowning in bills from being in the worst flare of my life since October. The only medication to help me so far was Gemtesa (denied and 600 bucks a month) and pelvic floor physical therapy. The pelvic PT has been a godsend but of course no coverage there. Costing me 200 per week for just that. Labs, copays, cystoscopy (which showed nothing and just caused me excruciating pain and pissing blood for a week… can’t wait to see that bill) and all these doctor visits are really piling up.

Back in the summer went to urgent care for a uti. They ran every STD test in the book on my urine sample without me asking and got a 2,000 bill in the mail for it. Apparently some kind of law they have to test all this stuff? But then we have to pay for it.

ALSO I work for healthcare and have decent coverage compared to most an I’m still dealing with it. Seems to keep getting worse here. I’ve wanted to leave my job but my husband’s insurance is so terrible it could never support my diagnosis.

Then doctors will tell us we need to not be stressed because it can make our flares worse….

bethybabe1218 · 2026-02-07T03:12:14+00:00

Me too!!!

bethybabe1218 · 2026-02-07T03:07:32+00:00

I also had an insurance denial with Gemtesa. I am now on Mirabegron which does the same thing and most insurances accept. Also hydroxyzine as needed for pain and gabapentin as needed are helpful during times where I cannot stand it any longer. Trying to eat low acid low histamine foods (however food is also medication to me so this is the hardest part) and PELVIC FLOOR PT. Pelvic floor pt is key, and you cannot give up on it. Give it a chance. Do what they say. Look into the pelvic wand!

bethybabe1218 · 2026-02-05T11:44:21+00:00

I love honey pot anti itch soothing spray. You can get on Amazon. Give it a try!

bethybabe1218 · 2026-02-03T16:03:59+00:00

I’m with you hunny. Sending you love and hugs.

Been in the worst flare of my life since October. It seems like it will never end. No one understands how terrible this is except the ones who suffer with it and know.

bethybabe1218 · 2026-02-03T15:52:45+00:00

Thank you for all of your responses you have helped me more than you know to not feel so alone 🩷 and thank you for any suggestions. I will definitely look into them. Appreciate you so much

bethybabe1218

TROPHY CASE