Interstitial Cystitis

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Interstitial Cystitis
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    Good news! We have done some tests and there is absolutely nothing wrong with you

    People call me beautiful. Friends tell me how jealous they are of my thick shining hair, my perfect size ten figure and gym toned arms.

    Perhaps this is why when I would go to doctors, with desperate assertions of my chronic pain, they would reply with, “So you are suffering discomfort.” or my favourite, “Good news! We have done some tests and there is absolutely nothing wrong.”

    Perhaps that is why, when I told friends of my stomach aches and my migraines, they would laugh and tell me I was a hypochondriac.

    At sixteen I was diagnosed with IBS. I was told I needed to keep control of my diet, although no more information was given. No indication of what food to exclude or how to find out what my triggers were. Just the cold hard facts that if I had a flare up it was my fault for not managing it. I never thought badly of the doctor for this, he had a long list of patients with much worse conditions. Why would he have much time to deal with a young girl who was for all intents and purposes, very healthy.

    I spent my 20s through good times and bad. I’d have flare ups and lose lots of weight, have years when I’d vomit from a single glass of wine. But I could deal with it. And there was the upside. I reached my 30th birthday with the same waste line that I had when I was 16 – and people thought it was fantastic. Beautiful, they said.

    At 30 interstitial cystitis was added – I would lock myself into the office toilets and weep into my hands. The pain seemed unbearable. Then came the incontinence. I went to a long line of specialists. Bladder training was used – I was told that often the root cause was that women use the toilet too often, and in doing so women inadvertently caused this condition. I just ‘thought’ I needed to pee, apparently. In a way it did help. Now I can bear the pain. Even if it feels like daggers are tearing through my urethra, I can choose not to go to the loo.

    At 34 we started trying for a baby. It was slow, as it was not very often I would allow anything to touch my pelvis, swollen and painful as it was. But after 2 years we fell pregnant. We were so excited but the pain was terrible, all through my abdomen. My midwife seemed too busy to ask. She rushed me through, skipping half the medical history questions. She noticed the distressed look on my face when I tried to push for more information, but all she could say was, “It’s normal to be anxious with your first. But you’ll be fine, you’re healthy.” My stomach was too painful to touch, I felt like fainting.

    Finally the 12 week scan came around. I’d miscarried 6 weeks earlier – the pain in my abdomen had been trying to tell me so, but it was all just one ball of pain. The same pain that since I was 16, I had been told was not really pain at all.

    Sadly things got worse, as the miscarriage turned septic and I was rushed into hospital. Nurses scurried around me with concerned faces, connecting me to all sorts of beeping machines. To my surprise, I was offered super strong pain killers, along with sympathetic eyes. Was I now in pain? For me the physical pain was no worse than flare ups I’d dealt with for all my adult life. After all, I just had a low threshold to pain, didn’t I? But this was a diagnosable thing – a definitely painful thing, and I was given the works!

    I’m 37 now. Two miscarriages down, 2 stints in hospital for infections and sepsis, 1 year in self-isolation for a chronic infection, and a tonsillectomy. Doctor’s have started to begin their sessions with by saying, “I’m sorry for everything you’ve been through”. It’s a strange turn of events. I think somehow my medical notes have tipped the balance to be somebody who probably does know what real pain is.

    I went to the doctor’s this week, my foot hurt. For no apparent reason I couldn’t walk on it. I am no longer able to judge how much pain I am in. Those years of giving scores out of 10 feel pointless to me. So many years being told I was wrong – I have lost any self belief in what pain really is. But I knew it was bad as I had begun to lose the ability not to cry. I hobbled in to see a private physician – having given up on the NHS’s week long waiting list. The doctor peered down at the swollen toe. “Oh nasty, that looks like classic gout, unusual for a healthy young woman to get it.”

    I suspect that generally is the problem – I am not quite as healthy as I might appear.

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    Back in Hospital Again 🏥 🤕

    Today, I just went to the doctor 👩‍⚕️ for GI issues, and all of a sudden started having a seizure. I have non-epileptic seizures triggered by anxiety and had a ptsd flashback in the doctor’s office which set of this whole shit 💩 storm. You see - I was abused in the medical setting - physically, verbally, and emotionally. I was gaslit and told I was faking and needed to snap out of it. FYI it’s pretty hard to fake a seizure. Now I’m losing all my body functions again - can’t walk, can’t talk, can’t even pee on my own. I feel so incredibly hopeless and depressed that I’m going through this all over again. Just when I start seeing a glimmer of hope that I’m improving and getting better this happens. I just want to get better more than ever!!! I’m only 23 - young with lots of hopes and dreams and my whole life ahead of me. I don’t want to be stuck in a wheelchair with a catheter needing help doing everything, when I was just started to gain more independence and get my life back. I’m trying to stay strong, but I just really need some words of encouragement and hope from anyone whose experienced something similar. If any of you are out there I could reach out I’d really appreciate it 💞 #FunctionalNeurologicalDisorder #InterstitialCystitis #Gastroparesis #PsychogenicNonepilepticSeizures #PTSD #medicalabuse


    I'm really enjoying exercising!

    My health issues make it really difficult to exercise - particularly the Postural Orthostatic Tachycardia Syndrome. I faint pretty often, and because of that, I've always been terrified of doing any major exercise.

    But in the last few weeks, I've been slowly building up my tolerance when it comes to walking. Any time my sister comes over, we go for a walk that usually lasts just over an hour. I monitor my heart rate on my Fitbit, which is an absolute god send since it also helps me keep track of my weight loss progress and how well I sleep.

    My sister, despite being 5ft 1in, walks VERY fricking fast. I sometimes have to tell her to slow down, because I just can't keep up with her, haha. And I'm 5ft 7in! I have stumpy legs, damn it. But the fast pace means I lose more weight, so I try my hardest to catch up to her, hah.

    I'm really proud of myself. My step goal on my Fitbit is 6,000 steps a day. Which probably doesn't seem like a lot, but for me? With all my issues? I'd say 6,000 steps is ideal. Last week I managed to reach my step goal twice! Today, I walked into town (about 1.3miles), and reached 6k steps again! So, this week, I'm aiming to reach it three times, and maybe next week I'll try and go for four!

    I'm loving being close to my sister. It's only in the last 18months that we've bonded. I love what we talk about when we're out walking. I love my nephew and all the cute little cooing noises he does, like he's butting into the conversation, haha.

    I'm really proud of myself. My GP always says; "Remember, it's important to celebrate EVERY victory - even the little ones."

    So... I'm going to.

    #chronicillnesswarrior #ChronicPain #posturalorthostatictachycardia #EhlersDanlosSyndrome #NAFLD #Diabetes #IBS #InterstitialCystitis #GERD #EnlargedSpleen #Migraines #LiverDisease #Dysautonomia #BPD #Depression #Anxiety

    See full photo


    I've just joined mighty and looking for people who understand the struggles of chronic pain. Here's a bit of my story....On the outside I look young and healthy. I go running. I help my extended family out when they have problems. I'm the sensible one. I'm the successful one.

    But inside I'm often crumbling.

    at 16 I was diagnosed with IBS. And although it felt crippling, I was told by doctors it's not painful.

    at 30 I was diagnosed with interstitial cystitis - I have the symptoms of cystitis all the time. Specialists told me "It's not actually painful." My friends tell me they need to use the loo often too - it's just normal.

    We have tried for a baby, but each time I have lost it and I am rushed to hospital. It's led to sepsis, which takes months to recover from.

    I spent a year self isolating due to other chronic infections and now have panic attacks and anxiety.

    I have migraines every month.

    I am now 37, I have just been diagnosed with gout. I woke up one day in crippling pain.

    I often dread the 30+ years I have left on this planet. Each condition gets more painful each year. And each condition adds further restrictions to my diet. I often want to cry. Sometimes I want to scream.

    Sorry - that was long and miserable! It's good to meet you all! I guess I'm looking for a little pick me up!


    Is there something wrong with my stomach?

    Hey, everyone. I hope you’re all okay and staying safe and well.

    I have a bit of a strange question. I have several chronic health conditions, including Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Ehler’s Danlos Syndrome, IBS, Non-Alcoholic Fatty Liver Disease, Diabetes, Interstitial Cystitis, Migraines, Gastro-Esophageal Reflux Disease and some mental health difficulties. So there’s a lot of stuff going on.

    Anyway, I regularly get stomach aches, or just an iffy stomach in general. I’ll sometimes go 2-5 days with a very minimal amount of food because I’m just not hungry and I feel sick. I’ve had lots of tests and scans and beyond having a Hiatal Hernia and some inflamed blood vessels in my stomach lining, they can’t find a reason behind this. But I’ve recently discovered that when I feel like this and/or I’m bloated… I can get it all to go away by drinking something fizzy. Doesn’t matter what it is, but as long as it’s fizzy… It almost instantly makes it better.

    Does anyone have any idea why this is? I do struggle to burp a lot - I always have. When I burp, they are tiny and don’t make much difference, even after I’ve drunk the fizzy stuff. I’m completely open to suggestions. I take all kinds of medication for my IBS and GERD. Antacids, Buscopan, Mebeverine, Metaclopramide (an anti-sickness). But they have a minimal effect when I have these stomach aches, bloating, nausea and loss of appetite.

    Thank you all in advance! Any suggestions would be greatly appreciated. Stay safe!

    #ChronicPain #chronicillnesswarrior #POTS #EDS #Dysautonomia #GERD #IBS #nausea #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraines #BPD #HiatalHernia #Advice


    Living with Interstitial Cystitis and Fibromyalgia

    I've been living with Interstitial Cystitis for 17 years. In layman's terms it means " painful bladder syndrome" It's been a long journey. As I matured, I decided I don't want to be a victim and I don't want to spend this one life being immoblized. So, when my fibro got so bad in conjunction with the surprises of an IC flare - I had a readiness to try meditation.

    I meditate everyday. It is a wonderful tool, learning how to calm down my nervous system. Learning to stay present, learning Im doing the best I can and thoughts are just that, thoughts. Giving my pain space to exist, stillness to rest, focus on the parts of my body that are not hurting and mostly learning to quell my reactiveness - which triggers the fight or flight. If you find you are at your breaking point - just like an alcoholic who reaches bottom - I would give meditation a try. I'm not saying my pain has been eradicated, but I am more calm and am better at relating to others - whether it be a significant other, friends or family.


    I really hate my crappy immune system.

    So, for years now my immune system has been awful. My doctor says it’s because of the variety of health issues I have. A heart condition, liver disease, kidney damage, enlarged spleen, diabetes, etc… When the pandemic started, I was told by every single doctor that I am at “extreme risk”. Tomorrow I’ll be having my 5th vaccine. I’m not looking forward to it.

    Anyway, since my nephew was born nearly a year ago, I seem to be catching ever bug, virus on infection that’s going around. I’m always careful - I wear a mask where I can, I wash my hands many many times in a day, I use hand sanitizer, and I still do social distancing.

    Last December I had a nasty cold that took nearly two weeks to go. Then in February I caught another one that knocked me on my ass. In May, my nephew passed on a particularly nasty/severe stomach bug that landed me in hospital. Five weeks ago I had ANOTHER cold… And now…? My baby nephew has passed on Bronchitis to me. I’m so exhausted. I haven’t felt this rough in a very long time. Before you ask, yes, I’ve done COVID tests. I’m negative.

    My fever keeps going up and down, with the highest being 39.9°C. I saw a doctor today, who said my lungs sound like Rice Krispies, what with how much they’re crackling and popping. I’ve been given antibiotics and two different inhalers today, since I keep coughing so bad I end up choking.

    Is there a way to improve my immune system? I can’t exactly get mad at a one year old baby. He really loves to play with me (mainly because no one else does - not even my sister), so I absolutely hate it when I have to stop because I’m in pain with my other conditions or feeling too unwell. I put him above everything else. I just want to try and find a way where he won’t get me sick all the time.

    Any advice you have would be GREATLY appreciated. And thank you all in advance.

    #chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #LiverDisease #NAFLD #EhlersDanlosSyndrome #EDS #BPD #Diabetes #Migraines #InterstitialCystitis #WeakImmuneSystem #Immunocompromised #Advice



    I feel terrible...went off my Procardia and Vesicare all at once and am taking a 10 day med that interacts badly with them. So cold turkey it is. Just diagnosed with #idiopathicCNShypersomnia and this is the first step to determine what medication I will be on. My #Anxiety shot up along with agitation and irritability. My already difficult time parenting #ADHD and #ADD with #ADD became even harder. #Fibromyalgia #InterstitialCystitis #Vestibulodynia #Hypermobility to name a few. Not been able to drive and got an appointment at an epilepsy center finally to get a prolonged EEG after my abnormal one. I feel like life is getting a lot harder and I feel like I'm working a lot harder with fewer noticible successes. I'm trying my best to remember to be thankful...I just feel so sad right now, really feeling the losses stack up. I'm bummed because my pet hasn't seemed like he wants me to pet him much either. I feel repulsive to all things at the moment. I feel #Depression creeping in again.


    My mum kinda pissed me off...

    So, I've been trying to lose weight for a long time, and I've slowly been losing it. I walk for 2-3 hours a week at a brisk pace, I've been really careful of what I eat and drink, too. A couple of weeks ago I had a review of my diabetes, and I was placed on a new medication that's going to help keep my blood sugars down. I'm still going to keep up with the diet and exercise, though. A nifty side effect of this drug (Dapagliflozin) is that it helps you lose weight, which my doctor thinks is a good idea.

    Exercising can be difficult for me because I have Postural Orthostatic Tachycardia Syndrome - when I stand up, my blood pressure plummets so drastically I often faint, and to make up for the drop in blood pressure, my pulse skyrockets - often getting up to around 150-160bpm. It's a horrible condition and I truly hate how much it limits me.

    I've managed to drop my weight down to 95kg (209lbs), and I'm really pleased. And my mother said... "I wish I had a heart like yours. MY weight would fall off too if my heart rate was constantly over 150bpm."

    Like... Excuse me? I couldn't help but get really angry. I'm not even sure how I managed to hold my tongue. I would give ANYTHING to be healthy. To not have this condition so I could have more of a normal life, so I wouldn't have to live in fear of fainting in public. I'm not even sure that ONLY having tachycardia would make you lose weight... But if it does/did... I still wouldn't want it.

    I'm just seriously pissed off. Would YOU be pissed in a family member said this to you? My friend says I'm overreacting. But, if anything, I feel like I'm underreacting.

    #POTS #posturalorthostatictachycardia #Dysautonomia #chronicillnesswarrior #ChronicPain #Tachycardia #EhlersDanlos #EDS #NAFLD #Diabetes #BPD #Migraines #InterstitialCystitis #HeartCondition #WeightLoss #Exercise #ChronicFatigue


    Doing more than I ever thought I could

    #Fibromyalgia #EhlersDanlosSyndrome #DishydroticEczema #Vestibulodynia #InterstitialCystitis #Depression #CPTSD #SocialAnxiety #ADHD #singleparent #Arthralgia
    All of these hashtags create a picture that at times seems pretty bleak to me. But other times it makes me feel empowered because I realize that I kick @#$ in spite of it. Some days the picture doesn't look very pretty and other days I'm thinking that's some fine art. I put forth my best effort every day, and every day that looks different. I'm sending you all love and peace, and hoping wherever you are, that you don't allow your long list of diagnoses and labels to define you. Every challenge brings an opportunity. Hang in there. 🌻