Interstitial Cystitis

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Interstitial Cystitis
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    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

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    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
    Community Voices

    Running Through the Flames (poem)

    <p>Running Through the Flames (poem)</p>
    Community Voices

    Reminding myself how strong I am 💚

    <p>Reminding myself how strong I am 💚</p>
    16 people are talking about this
    Community Voices

    Reminding myself how strong my body is

    <p>Reminding myself how strong my body is</p>
    Community Voices

    I’m starting to think I might have Gastroparesis.

    Ever since I was a baby, I’ve struggled with stomach issues. I’ve never been able to vomit normally - I literally projectile vomit EVERY time. I’ve been told it looks like I’m a cartoon when I do it. I end up with EXTREME stomach and throat pain. And over the years, I’ve noticed that I can sometimes not have eaten for 6+ hours but I’m still bringing up an excessive amount of what appears to be undigested food.

    This past weekend, I managed to catch Norovirus - the “winter” vomiting bug. Between the hours of 3:30am and 8:30am on Sunday morning, I was curled up on the bathroom floor sobbing, unable to stop myself from bringing stuff up. But I hadn’t eaten since 6:30pm that evening. So, it had been around NINE hours WITHOUT consuming anything other than water.

    TRIGGER WARNING - this part might be a bit gross…

    When I started vomiting, I could SEE what I’d eaten for dinner. Very clearly undigested cucumber, cherry tomatoes, and stuff like that. I managed to fill a 2 LITRE bowl up twice in the space of about 30-60mimutes, then I continued to bring up insane amounts of bile (BRIGHT greenish yellow) for HOURS afterwards. This can’t be normal, surely? I thought the stomach was supposed to be empty after 4-6hours? But to have a FULL stomach after NINE hours? Jesus. I haven’t felt so ill in all my life.

    From all the retching and vomiting, I’ve torn the muscles in my sides and my abdomen - it’s really hard to laugh and cough without crying. My fever was originally 39.8°C but is now down to 37.9°. I’m still achy, though. I imagine it’ll be a few more days before I’m back to my version of ‘normal’.

    I’ve had SO many investigations for acid reflux, stomach aches and GERD in the past. All we ever found was the GERD, a hiatal hernia and VERY inflamed stomach linings. Surely gastroparesis would’ve been found before now…? How do I go about having this looked into?

    Thank you all in advance, guys. And I’m sorry for the graphic description of my puke. 😬

    #chronicillnesswarrior #ChronicPain #GERD #IBS #NAFLD #POTS #EDS #Dysautonomia #Norovirus #TMI #SicknessBug #InterstitialCystitis #Diabetes #Migraines

    5 people are talking about this