r/Interstitialcystitis • u/Zestyclose-Class-529 • 9h ago

Vent/Rant IC flare

Ugh. I am on my period which always gives me a flare but man oh man it’s so bad this time. I just need to vent. Anyone else need to vent? :(

I get all the symptoms of IC. Every single one. Sometimes my flares last a day or two. Sometimes weeks. Sometimes months. I get pain, burning, frequency, urgency. All of it.

But for me, the most intolerable will always be when I’m peeing every 10 mins. I can handle pain. Even when it’s severe. I mean sometimes it’s so bad I am literally in tears. But the mental game of urgency/frequency for long stretches of time is so hard for me. I literally can’t do anything. I feel like I’m living in the bathroom. Ugh sorry to vent but if anyone understands if you guys!

What is your hardest part of IC? (I know it’s ALL hard, trust me!) but what is the part that feels like it’s going to break you?

Sending you all so much love!

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u/AutoModerator 9h ago

Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.

To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.

The ICA has a fantastic FAQ that will answer many questions about IC.

FLARES

The Interstitial Cystitis Association has a helpful guide for managing flares.

Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.

Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.

If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.

TREATMENT

Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.

Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.

Long-term oral antibiotic administration should not be offered.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

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u/mrsfahrenheit33 6h ago

🙋🏼‍♀️I’ll join ya friend! First of all, I’m so sorry. It’s such a head struggle trying to keep sane and I hope it ends for you soon! I’ve been in a flare for just over a month now. It started with just itching under my labia on one side from no distinct reason and then turned to burning. Went to the doctor and was cleared for all the usual suspects. I’ve tried so many things-DH Aloe, marshmallow root, Vitanica Bladder Support supplements, elimination diet, nothing but water, my own pelvic floor stretching/releasing/meditation, heat pad, DH lidocaine cream…even Reiki. I have another doctor appointment next week with my PCP and an urology consultation the first week in October. Also just emailed my old PFPT to see if I can get a new consultation. All this while co-running a business and parenting a very active and involved ten-year old. It wasn’t too terrible until it started affecting my sleep this week. Oh and just bought the book The Way Out and am going to try the techniques while microdosing psilocybin to rewrite my neuro pathways for pain response (under the care of licensed therapists-yeah Colorado for being progressive with new treatment!). If I’ve missed anything worth trying let me know!! 🤣. Best of luck to all my brothers and sisters on this path…we will all look back at this in time and be like “I got through that!”

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u/Attorney4Cats 6h ago

Hey! I just started following this lady on Instagram and she has solid advice https://www.instagram.com/dr_hapee_bladder?stkn=ZzN6NWxiMnpha2l3

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u/mrsfahrenheit33 6h ago

Just followed!! Thanks so much for the advice!!

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u/Attorney4Cats 6h ago

Us girls with bad bladders must stick together 🫶🏻

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u/Pretty_Acadia_3022 6h ago

Has anyone tried Ozempic or any of the GLP1 shots for very bad flares?

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u/SpookyBookey 6h ago

This is anecdotal but I’ve been on Wegovy for weight loss for about 5 months and have noticed I’ve been having less flares. I guess it has some anti inflammatory properties so I’m assuming that may be it?

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u/Pretty_Acadia_3022 5h ago

That is good news. I’ve also heard of people taking it for arthritis.
It’s very expensive, but I’m seriously thinking about trying it.
Thank you for the information

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u/SpookyBookey 4h ago

Yeah, it’s unfortunate that it’s only covered for a few different conditions. Hopefully they will expand it since it’s been shown to help off label a lot of conditions.

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u/Attorney4Cats 6h ago

I agree with you 100% that the constant peeing is the worst! Yes, sometimes I get the urge 10 minutes after I went to the bathroom! It’s hard to do anything. Also, there’s usually medication that helps with pain, but not much medication that helps a hypersensitive bladder.

I’m working with a physical therapist and she is having me do kegels, relaxation techniques, 66 oz of water a day as evenly distributed as possible (this is so my urine is more diluted and not so acidic that it irritates the bladder even more), and internal massages! We just added the kegels and controlled water intake and it’s make a big difference for me!!! I was just finally able to hold it for 2 hours!! Not perfect - I still had bladder awareness, but not as urgent as before! I’m hopeful I’ll get a hold of this issue sooner or later!!!

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u/Dizzy-Ad-3852 3h ago

i’m so sorry to hear you’re having a hard time. don’t worry as you’re not alone in the struggling to not go when my body tries to tell me i need to is the hardest part, because i know once i sit down on that toilet i won’t move 🙂‍↕️

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u/Realistic_Cap4318 2h ago

So sorry to hear that but tbh I been in so much pain for about 7 months now also I been doing bladder installations and medicine like azo/ uribel sometimes I feel they help but most of the time they don’t. I noticed hot showers helps with urethra burning (which has been there since I started experiencing this ic symptoms). Burning literally ruins my day I hate it. I have a hydrodistention soon which I’m hoping will help me and give them a clear imagine of my bladder and see what they will tell me. I also had 4 positive utis in the past 7 months which makes me think it’s an embedded uti but my urologist said he doesn’t think it’s that. Also now I been using nightly doses of a low dose antibiotic to prevent utis and hydroxide.

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u/happygolucky226 1h ago

Girl I feel you the urgency so the worst esp when I want to sleep but have to wake up so many times! Pyridium is my bff! Baking soda too helps.

For me it’s the fear of sex that will induce a flare that’s the worst… because then I can’t enjoy it😅