Interstitial Cystitis

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Interstitial Cystitis
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    Community Voices
    Community Voices

    Does anyone else get really emotional when they're unwell?

    I know that a lot of us feel unwell most of the time. That probably wasn't a very well phrased title. But what I mean is... Do you get easily upset when you have a cold/flu/infection?

    As an example, back in May I picked up a very nasty stomach bug (that my baby nephew ever-so-lovingly decided to share)... And for the entire day, I just kept breaking down into tears. For pretty much no reason. I don't know if it was frustration or if I'd just had enough... But I've noticed it happens every time I'm unwell.

    I've had a cold for about a week now (several COVID tests have come back negative, despite me being certain this isn't an ordinary cold), and I just keep breaking down at the drop of a hat. My sister brought me a slice of my favourite cake from my favourite bakery and I burst into tears. The level of emotion is crazy. I don't like crying even when I'm feeling okay, so when I suddenly start sobbing, I get angry at myself and then usually end up crying more... I keep wondering if it's simply exhaustion? I'm immuno-compromised, so what other people would call a mild illness, is usually something that knocks me off my feet.

    I'd just like to know if there's anyone else out there that's like this? And if you know of a way I could maybe minimise the tears? I feel so silly.

    #chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #cold #Flu #BPD #Migraines #IBS #exhaustion #tired #emotional #unwell #immunosuppressed

    10 people are talking about this
    Community Voices

    I need a pat on the back…

    I’m type 2 diabetic - I was diagnosed in 2019, on my birthday. The nurse that I spoke to gave me the impression that I could CURE it. That one day, if I worked hard enough, I wouldn’t be diabetic anymore. I wouldn’t have to constantly watch what I’m eating and drinking like a hawk. I kept thinking that for about a year, until a different nurse told me the cold, hard truth. I will always be diabetic, and I will always be fighting to keep control over my sucky pancreas. (Yes - I’m bitter about it).

    For 2020, I managed to get my diabetes in remission and I was so fricking happy.

    But, I had a reeeally rough time last year (2021). I was completely unable to exercise for months on end and I hated it. My HBA1C started steadily climbing upwards despite cutting down carbs and avoiding sweet stuff. Then, at the beginning of THIS year, I started going for 45-60minute SLOW walks with my sister and baby nephew once a week. My numbers began going down. I’m not in remission yet, but I plan to be.

    And recently, I’ve been struggling a fair bit with my mental health and the urge to binge eat has been seriously strong. I really really want a slice of chocolate fudge cake from my favourite bakery. But my problem is that I can never stick to having just the one.

    So, at the beginning of this week I decided to buy a packet of my favourite biscuits - Hobnobs! It’s just an oaty biscuit, but I love them. Each biscuit is 3g of sugar, so I’ve been allowing myself two or three a day. I haven’t pigged out, I’ve been sticking with it and I’m really proud of my restraint.

    I could really do with a pat on the back right now. This is such hard work. No one told me it would be this hard.

    #chronicillnesswarrior #ChronicPain #Diabetes #Type2Diabetes #POTS #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #EhlersDanlosSyndrome #InterstitialCystitis #Migraines #BPD #BorderlinePersonalityDisorder #Depression #Anxiety #BingeEating #Food

    20 people are talking about this
    Community Voices

    I'm having my Loop Recorder taken out!

    In October of 2017, I had a loop recorder inserted to keep an eye on my heart. For those of you that don't know, a loop recorder is a small device (about the size of a small USB stick) that is basically an internal ECG.

    But since I've had it in, I've had pain around it, and spontaneous bruises that really hurt and come out of nowhere. Thankfully, I just received a call saying that they can take it out! And I'm so happy. But I'm worried about the procedure.

    Having the thing put IN was bad. I ended up with an infection and the pain was really bad. They had to sedate me to put it in because I was panicking so much.

    From what I've found online about how they remove it, it looks like it's really gonna hurt. Has anyone had it removed? What was your experience? Any advice is greatly appreciated.

    #POTS #posturalorthostatictachycardia #EhlersDanlosSyndrome #looprecorder #ecg #chronicillnesswarrior #InterstitialCystitis #ChronicPain #LiverDisease #NAFLD #Migraines #Diabetes

    2 people are talking about this
    Community Voices


    I’m new here. I have suspected orthostatic hypotension. I have InterstitialCystitis and Overactive Bladder. While Interstitial Cystitis is a diagnosis of exclusion, it is possible to have both conditions coexisting in one petulant bladder, lol. I have PTSD, anxiety, and I am neurodivergent. #InterstitialCystitis , #Dysautonomia

    3 people are talking about this
    Community Voices

    What should I do about the hot weather?

    Hey, everyone. I hope you're all okay and doing as well as you possibly can be. I'm very desperate for some advice on the weather for Monday and Tuesday this week.

    My health rapidly gets worse in warm weather. My POTS acts up and I faint a LOT, my joints end up hurting really badly, I get muscle cramps and I dehydrate VERY easily. And when I'm dehydrated, my bladder condition flares up and becomes extremely painful.

    On both Monday and Tuesday it's meant to be over 40 degrees, and I can see myself suffering really badly. Does anyone have any tips/hacks/advice for me? I'm willing to try anything. I'm going to keep bottled water in the fridge, make sure I drink as much as I can without popping, and I'll probably stay in bed with my fan directed at me.

    Thank you all in advance.

    #posturalorthostatictachycardia #EDS #POTS #NAFLD #Diabetes #InterstitialCystitis #Migraines #ChronicPain #hotweather #Tipsandadvice #pleasehelp

    12 people are talking about this
    Community Voices

    So much stuff!!!

    I have been having a really hard time and it’s been a reallly long year for my family.
    About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

    I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

    When I was younger my brother more than once sexually assaulted me.
    I don’t know if it actually considered that
    I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

    My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

    So the situation is idkw but after he had his stroke I just couldn’t speak to him.
    I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

    I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
    He has been trying to get in contact with me but I have thwarted contact.

    My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
    I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
    I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

    #SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

    8 people are talking about this
    Community Voices


    Community Voices
    Community Voices

    So much pain

    I’m in a horrible interstitial cystitis (some call it painful bladder syndrome) flare up right now. Day 3 of this horrible horrible pain. My bladder is burning. It hurts to pee. It hurts to not pee. I can feel my bladder and pelvic floor spasming. It’s giving me a stomach ache and a headache. I’m afraid to eat or drink anything besides baking soda water. I’ve been taking azo as often as allowed. All I did was take 3 single sips of a drink my friend for a few days ago and I guess that was enough to do this. I haven’t had a flare up in years. I was supposed to enjoy the 4 days I had off with my boyfriend doing all the fun activities we planned and yet all I did was sleep the days away out of pain! No one understands how mad this makes me, how unfair this is! I finally get to go out with my girlfriends and this is what happens to me. This is why I never want to do anything fun. It’s never worth it in the end. Monday Tuesday and Wednesday spent in severe pain, spent sleeping. I have one day off before I go back to work for two nights. How am I going to survive work when I can’t even handle staying awake at home? I’ve maxed out on call outs this year so I’m screwed. I’m so sick of being sick. When does this end? 😭 #InterstitialCystitis #ChronicPain #Depression #alone #LymeDisease

    9 people are talking about this