Interstitial Cystitis

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Interstitial Cystitis
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    Good news! (And a rant).

    Hey, everyone. How was your Christmas? Mine was pretty awful, honestly. I'll try and explain it as best as I can.

    Around 4 years ago, my mum was talking to my big sister (her name is Dawn), and she told her about my health conditions/problems. Dawn then proceeded to accuse me of faking my health issues. Despite the many scans and test results clearly showing they are real. And then, shortly afterwards, she said that any gifts or presents I buy for people for birthdays/christmas (and everything else) are worthless because the money comes from a 'government handout' (disability benefits). After learning this, I refused to talk to her unless she apologises. So, we didn't talk for several years.

    My little sister (Jess) gave birth to my nephew in 2021, and I love him very much. Since Dawn doesn't live near us, she was only able to visit this passed Christmas, and she stayed at Jess's house for two weeks.

    Originally, before Dawn announced she would be coming, the whole family was going to go to Jess's house for Christmas dinner and whatnot... But once she booked her tickets and everything, Jess said that I wasn't allowed to go to the event. I wasn't allowed to spend time with the whole family. Which REALLY upset me. So much so, that I seriously comfort-ate for a couple of weeks. I was binge-eating whatever I could get my hands on. And I spent the entire of Christmas day curled up in bed watching stuff on my laptop. It was my first Christmas alone and I hated it.

    Anyway, that leads up to the good news. I was really expecting my diabetes to be so much worse, and I was expecting to have put on a lot of weight. So, I reluctantly went for my weight and diabetes check last week. After they recorded my weight, they told me that since last July, I've lost 20lbs! And my HBA1C blood test came back yesterday - it's not worse! In July it was 63, and as of yesterday, it was 62. Admittedly, it's not much progress, but considering I was expecting it to be a disaster, I feel pretty good.

    Anyway - I'm sorry for this rant, I guess. I just needed to get it out. Thank you for getting this far, though. Have a great day!

    #chronicillnesswarrior #chronichealth #ChronicPain #POTS #POTSUK #EhlersDanlosSyndrome #EDS #NAFLD #InterstitialCystitis #BladderPain #BPD #BorderlinePersonalityDisorder #Familydrama #Depression #PTSD #Migraines #Diabetes #diabetic #WeightLoss

    51 reactions 10 comments
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    Interstitial Cystitis Flare

    “For me I really like corn 🌽 😜” using frozen corn to ice my pelvic area. In a really bad flare right now with IC and IBS 😫 trying to decrease inflammation - fluctuating between ice and heating pad. Also, gonna try to take an epsom salt bath 🛀 later. I’m sooo frustrated because I thought my IC was getting better!!! My doctor believes the IC might of been to the parasites and tick-borne illness (babesia + bartonella), so I’m taking meds and supplements for that, but herxing has been rough! I also received a bladder instillation and pelvic PT. I’m at my wits end dealing with the chronic pain and intractable fatigue. Do any of y’all have any other tips for coping and managing pain that I didn’t mention? Also, I’m considering looking into acupuncture 🤔 Has anyone looked into acupuncture to treat their pain? #frozencorn #InterstitialCystitis #ChronicPain #IrritableBowelSyndromeIBS #ChronicFatigue

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    Gluten Free Bread Making?

    Hello, I'm hoping I can get some help/opinions on trying to make gluten free bread.

    I can't buy the gluten free bread in stores because of preservative sensitivities, so I'm stuck having to find the easiest way to make my own.

    I've been going without for almost 3 years, but I just went through a horrible round of stomach flu and would have sold my greatest possession for a slice of toast!

    With my chronic fatigue and fibro I have been looking at bread makers with gluten free settings, but would love advice or recipes if anyone has suggestions.

    #PPPD Dizziness

    8 reactions 7 comments

    New Year's Resolutions

    Every year, I always set myself difficult NYRs that I never manage to fulfil for some reason or another. It's usually something like losing 35kg/80lbs off my weight within months, but I never do it.

    So, this year I've set myself two relatively simple ones that I think I'll be able to achieve by the end of the year, as long as I keep reminding myself. Hell, I might write them on my white board that's in my room so I never forget.

    Number one: To learn to accept and respect my limits with regards to my physical health.

    Number two: To know my worth and never settle for anything less.

    What ones have you set?

    Happy New Year, my lovelies!

    #chronicillnesswarrior #ChronicPain #POTS #posturalorthostatictachycardia #EDS #EhlersDanlos #NAFLD #InterstitialCystitis #BladderPain #Diabetes #Migraines #Depression #BPD #BorderlinePersonalityDisorder #newyearsresolution #nyr #Happynewyear #goals

    22 reactions 9 comments
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    More diagnoses and 4th time Covid.

    I haven't journaled, haven't been making art, it's been -34F wind chill days of blizzards, the apartment we moved into had bedbugs and we've been fighting them since before Halloween. I legally lost my ability to drive myself and my 3 kids places with the idiopathic cns hypersomnia and epilepsy diagnoses. This time of year is tricky bc of my miscarriage at Christmas a few years ago. Our two bedroom, 850sq ft. apartment feels claustrophobic and the holidays were sandwiched between two of my kid's birthdays. With out of pocket meds, my expenses are bigger than child support. I can't work right now and spend my days in PT and to attend specialists. Basically, I feel like even with progress, I'm barely keeping it together. And then on December 16th, I caught COVID for the 4th time and I still have it. I am so tired and discouraged and I feel stuck. Yesterday, I finally had enough energy to try to draw. My hands haven't been working right in months, after the last round of seizures, so it made me feel pleased to see this little bit of peace on paper. #EhlersDanlosSyndrome #InterstitialCystitis #Fibromyalgia #ComplexPosttraumaticStressDisorder #majordepressive #Vestibulodynia #idiopahiccnshypersomnia #Epilepsy #DishydroticEczema #Miscarriage #COVID19

    24 reactions 5 comments

    Scared to post about this

    I don't know if anybody here has been diagnosed with interstitial cystitis but I have. Has it affected your sex life? Has it made you feel like your sex life is inferior? I feel this way because I've been married for 24 years and every time that my husband and I have sex it hurts so bad afterwards that I'm scared even have it at all.

    4 reactions 6 comments
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    Treatment for IC

    Getting my first bladder instillation today. Really anxious 😬 but hopefully it goes well and gives some relief 🤞 Have any of you found bladder instillations helpful?
    #InterstitialCystitis #ChronicPain

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    I feel good today!

    I’m in a good mood today! This morning while at the pharmacy collecting my painkillers, I did my good deed for the day - a man was trying to buy some cough syrup for his partner, who has a chest infection, but he didn’t have enough. I paid for it myself and refused to let him give me what money he had. Instead, I said he should spend it on her favourite chocolate.

    I’ve had a lovely relaxing bath, which always exhausts me but I feel alright so far.

    AND, I’ve made a nice start on the second chapter of what I hope to one day be my debut novel. 1,554 words so far today!

    Now I’m about to sit down and have some peanut butter on toast. Lovely-jubbly!

    #ChronicHealthCondition #ChronicPain #POTS #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Dysautonomia #EDS #EhlersDanlosSyndrome #NAFLD #Diabetes #InterstitialCystitis #Migraines #Depression #BPD #Feelinggood #beingpositive

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    Interstitial cystitis #ic

    Does anybody have any flare up tips for IC? Im newly diagnosed and looking for some tips on how to alleviate some of the symptoms even a little. #InterstitialCystitis #Flareup #ic

    1 reaction 1 comment

    Is honey okay for me to consume a few times a week?

    Hey, everyone. I hope you’re all okay and keeping warm.

    I was just wondering… Is a little bit of honey a few times a week okay? I really enjoy peanut butter and honey sandwiches or toast. It’s helpful when I feel like I really want something sweet to eat.

    As a bit of a background, my last HBA1C in August(ish) was 62. I’m doing around 2-3hours of brisk walking a week and whenever I’ve had my blood sugar randomly tested, it’s always been between 4 and 8. I take slow release Metformin, Semaglutide and Dapagliflozin. I don’t have to test my blood sugar regularly anymore.

    I don’t use much of it. Maybe a teaspoon’s worth in a peanut butter sandwich and a little dollop on my peanut butter on toast. And I don’t have it every day.

    What do you think? Thank you all in advance. Stay safe! And stay warm!

    #chronicillnesswarrior #ChronicPain #Diabetes #DiabetesType2 #POTS #EDS #Dysautonomia #NAFLD #BPD #EUPD #InterstitialCystitis #Migraines #diabetic #Advice

    7 reactions 4 comments