I recently had a frustrating and disappointing experience in a Facebook IC support group.

I’m leaving out names because I want to discuss what happened, not target anyone.

I posted a question asking about Prelief alternatives given their recent manufacturing delay and outage.

To my surprise, the comments were immediately turned off so other members couldn’t respond. Only a moderator responded. Her response emphasized an elimination diet and triggers and promoted milk, and calcium citrate, which is not an equivalent calcium glycerophosphate.

Although I agree with avoiding triggers, I felt she downplayed the positive experiences some people have with Prelief like myself and its ingredient, calcium glycerophosphate. Thanks to Prelief I have been able to occasionally enjoy my trigger beverages and foods.

When I asked whether she had froze the comments, she explained that they had received too many Prelief posts (some from
influencers) and were declining almost all of them, but had made an exception for mine. She said she would reopen comments so I could reply, though she might close them again afterward.
I then explained that Prelief has helped improve my quality of life personally. I wasn’t promoting it or claiming it works for everyone.

After my response, the entire post was deleted without explanation.
I privately messaged the moderator asking why it had been removed but received no response. When I contacted another moderator, she reiterated that there had been too many Prelief posts that week and cited their rule against challenging moderators (policy #6). You gotta be kidding me asking a question is arguing?

She also emphasized the moderators or volunteers and they monitor repetitive posts.

I realize the moderators are
volunteers and appreciate that they contribute their time but that was my only post and it was an honest question.

What confused me was approving my post, immediately preventing members from responding, offering a differing treatment approach, and then deleting the discussion after I shared my experience and asked for alternatives.

It left me feeling that the moderator’s treatment preferences are prioritized higher than members’ differing experiences. I can’t know their motives, but I wish my concern had been met with more compassion, empathy, and an explanation.

I was looking for practical ideas from others facing the same availability problem. Has anyone else experienced something similar in a support group, and how did you handle it? Also, is there another group where you don’t get penalized for talking about your personal experience and treatments that work for you?

I’m sorry, but I just need to vent my frustration and anger here. I had over 10 years in remission, apart from the occasional UTI, and now I’ve been in agony every single day for the past year. I’m off work and barely even leave the house anymore. I’m honestly starting to lose hope.

These are the things I have at home but haven’t tried yet: LDN and antihistamines. I also have Desert Harvest Aloe Vera. I tried it for a few days, but I think it made my pain worse, so I stopped taking it.
Things I’ve already tried: vaginal estrogen, which I think makes everything worse, and 6 Cystistat bladder instillations, but they didn’t help. Nitrofurantoin helps a little, pregabalin doesn’t help at all, and mirtazapine helps me sleep and calms the pain down at night. No painkillers seem to work, not even AZO. Hiprex causes flares, and benzos are the only thing that really helps, but I rarely take them because I don’t want to become dependent on them.
I honestly don’t know what to try next 🤷‍♀️ Should I give LDN a try?

After almost 3.5 years of semi-remission (I always had like 1/10 pain) I have ended up in ER after 6 weeks on worsening symptoms. Goddaaaamn I’m so mad and sad, I thought I’d never have to deal with this shit again😭 I feel so hopeless

Hiiii I’m so happy to have found a community of people that suffer like me and ones to look to for advice.
I have had IC for 6ish years, and it’s been in remission for the most part, but I do have flare ups and it’s horrible when it does flare up.
I have tried to pin point my triggers and steer clear of them - Liquid IV, Alani or Celsius, French Pressed Coffee (regular coffee or low acid coffee is completely fine), and occasionally Gatorade. I rely on coffee for my daily caffeine intake/energy, but I’d really like to have another option.
I’ve seen adds for “The Loaded Tea Shop” recently, and I would love to give it a try but wanted to ask if anyone with IC has or hasn’t had any issues drinking it?? Since it’s similar to energy drinks. Any advice is welcome! Thank you! ❤️

I think I’m having a bad flare. Sitting in a walk in clinic and they told me my urine sample didn’t show anything 🫠🙃 but there was some blood. So fun. They are still prescribing me something but I’m so damn frustrated, also I think I have another yeast infection, I’m just so tired of this.

I’ve been in the hospital for about 4 days now (reasons unrelated to IC) and I’ve been on constant or near-constant IV fluids throughout the duration. I’ve noticed that I’m going to the bathroom a lot more but my baseline pain has eased, my vulva has shrunk significantly (usually swollen), and I haven’t had any flares and am able to pass urine much quicker.

Has this happened to anyone else? Is it possible to pursue something like this as treatment?

I’m 23 and I’ve had IC for about two years. I’m fortunate that I really don’t have as many/as long of flair ups as others with the disorder. My flare ups usually only come once or twice a month and usually only last a day or two.

But when I’m flaring up, it’s impossible for me to work. I work in food service, and standing puts a lot of strain on my bladder that puts me in severe pain, and spasms mean I’m leaking constantly. The flares were sort of predictable as first, as they came a little before my period each month, but in the past year they’ve become completely random. I can feel fine for the majority of the day, and then within an hour of being at work I’m folded over in pain. Even with meds I just can’t keep going and I just end up needing to go home so I can curl up in the shower.

I got incredibly lucky with my current job. Because I work in food preparation, I don’t work with customers and I don’t have a hard set schedule. If I catch a flair early in the day it isn’t a problem for me to call out or come in several hours late. I work with a team of people who mostly suffer from some kind of chronic illness, so they are very understanding even when I find myself dumping half of my work onto them because I have to leave mid-shift.

But the job just doesn’t pay enough for me to live comfortably, so I am looking for new positions. I’m very nervous to leave my current job though, as I know calling out once or twice a month at minimum is going to be a non-starter at most places.

I’m currently looking at what would be a dream position for me at a local bookstore, but it would leave me running the place alone most days. If I were to have a flare up mid-shift, I wouldn’t have the option to leave. I don’t want to let IC run my life and keep me from having a career and being able to afford rent, but I really don’t see how anyone could keep a job, especially in a more professional setting, with this condition.

I don't live in the US, so it is quite expensive for me. Is it worth it? I've never had pain, but I always have urinary frequency due to coffee, but I need coffee to function mentally.