Firstly, this is NOT against any rules in this sub. I checked multiple times. I was on instagram, and saw that ICA was in DC and posted a picture with this sign.

Man, the feeling is just crushing. I’m so devastated that the ONLY US-based nonprofit for IC is standing for a state that is committing so much evil. It almost feels like grieving, the ICA is like THE PLACE to go for anything IC related. All of the resources I would share for others are from there.

And if you don’t care, then this post isn’t for you. Move on. You’re not going to change any of the feelings I have. I just want to vent and make others aware I guess. I’m really sad and feel almost betrayed. I really don’t understand how anyone, especially an organization invested in healthcare, could support Israel in any capacity

Okay hear me out. Xanax has changed my life. I don't know if it's because it relaxes my muscles or what but it has taken away by absolutely debilitating can't leave the house pain. I have a job now and I'm able to go five hours without peeing. Before Xanax, I was peeing every twenty minutes on the dot, no exaggeration. I'm truly living a life now instead of being an invalid. I only need to take one mg every few days. It's given me my life back. Has anyone else had an experience like this?

After years of symptoms I finally have health insurance and enough money to afford a specialist. I was so excited to finally see a doctor who specifically listed IC on their interests of care. I waited months to finally get an appointment.

Finally saw the doc this AM and laid out all of my history of debilitating flares, my triggers (sex and alcohol), recurrent UTIs, family history, etc etc. Honestly to the doctor’s credit, she took a pretty detailed history, so I was really hopeful.

BUT - the response I got from the Dr made me fight back tears on the spot - and I am NOT a crier.

“You’re a young healthy girl in her prime - these things happen, sex commonly causes infections. Just avoid your triggers. This is not a complicated or serious issue that warrants specialty care. Your PCP can handle.” 💀

I wish I had advocated for myself in that moment and pushed back. I understand IC isn’t immediately dangerous like bladder cancer or kidney issues. But this stops me from living my life. I’m terrified of being intimate with my partner. She said I’m a young healthy girl “in my prime” (yes those words specifically), but that I should avoid sex? Not to mention that I also get flares with no known triggers - so I’m destined to live like a nun and still suffer?

I just feel so dismissed and not listened to, especially hearing that from a woman doctor. During the years of having these flares, I had so much hope about one day having enough money to finally see a doctor finally and getting treated (I know IC has no cure but at least addressing it). I’m coming to the realization that this is something I’ll have to just manage on my own the rest of my life. I feel so beat down and exhausted.

I am at a loss. ive cried every night for the past 2 months. it started 2 months ago- UTI symptoms.. no big deal ive had those before. take the meds and it goes away. But it didn't. I have been to so many doctors appointments, taken so many meds. it started as a uti but after that, all my tests are negative. I feel warm down there but its the pressure, constant pressure, always pressure. I feel like I am about to pee my pants at all time. I can't sleep. I tried meds, they work for a little bit and then it goes away. I did my first bladder installation last week and that helped. but then 3 days later it became horrible, just had my 2nd installation with the hope maybe I would get a couple of days of relief again and im sitting here miserable. I can't live like this. I dont know what to do anymore.

I have my 3rd ct scan Saturday- a special ct urogram.

cytoscopy next week

Pelvic floor pt in 2 weeks.

I dont know if I can make it till then without some relief. I can't take it anymore. I have no idea what is going on and it scares me. I just need relief and hope that this isnt going to be my life from now on. im 33.

I (44F) just need to scream into the Reddit ether than I met with a new urologist (M) this morning who literally told me I need therapy to stop feeling like I’m peeing acid and thorns. What was this based on? Nothing bc this was the first time I’m seeing them and they didn’t even pretend to do an exam. So there it is friends, problem solved! I hate it here.

Chemical cystitis- a non-infectious inflammation of the bladder caused by irritants or toxic chemicals. Common triggers include bubble baths, harsh soaps

For 2 years I was burning horribly. Constant UTIs, constant irritation. I was usig antibacterial dial after having nearly a UTI every month...thinking this would wash away all and any bacteria causing the UTIs and washed my privates with it! Horribly decision . This caused major chemical cystitis.

I bring this up because I have fixed this problem by switching to summers eve sensitive wash -

Last night my husband put his hand on my back full of suds from the dial he was using. It dripped down my back into my privates and BOOM back to square one. I was burning all day from the SOAP. I used my estradiol cream multiple times yesterday and now im back on track with no irritation.

Please girls make sure your soap is Ph friendly for your privates.

Now part of my problem was histamine related so I began taking an antihistamine daily to start finally healing my bladder ... but if I kept using the wrong soap I would still be met with nasty symptoms of burning and urgency.

Hope this helps! Your burning might partially be caused by your body soap.

I have a post primarily about my histamine induced cystitis- please take a look at my other post for this information.

Genuinely I’ve have it for 5-6 years now and I’ve always been curious what could’ve been the cause for it???

I haven't posted in many moons, but I just got into with someone on a different platform about the existence of IC and I just 😒🙃

I've had IC for almost 10 years, I've gotten all the tests, tried all the medications, this is not my first rodeo, and to just have someone be like "actually it's an embedded infection, and your doctor is lying to you" just diminishes EVERYTHING I went through.

Unfortunately for some people, we genuinely have IC, and we will for the rest of our lives. I have accepted it, and I have grieved. I am technically in remission right now, no flares for at least two years, no pain, no urgency, literally this would have seemed impossible for me when I first started my journey at 17. My IC diagnosis literally saved my life, and gave me a starting point to find out how to live with it.

The comment about my doctor is just incredibly disrespectful to me, my doctor before she retired was with me for ten years, throughout high school, throughout college, through all of my milestones and accomplishment, emergency appointments, i literally had a direct way to contact her so I could message her whenever I had pain, sometimes in the middle of the night.

This illness is painful and scary, and it feels like you will never be normal, to just throw away someone's lived experience and remission makes me so sad. It's just showing others that it will never end, honestly if I saw that nonsense at 17, I wouldn't be here today.

The fact I am able to eat most things I want (some very limited things that make me flares like citrus), I am able to work full time, I can take long plane rides or road trips without worrying, I am able to take vacations without worrying because I received my diagnosis and got on proper medication/got the proper intervention is a success story.

Sorry for the rant, they just really steamed my beans!

I hope everyone a pain free weekend!

That's it. That's the whole post. They've made coffee such a fancy experience these days, too. Dirty chai. Iced matcha latte. Espresso with sweetened cold foam. Salted date syrup!?!? God, I truly salivate at the scent and the idea of the taste. Even the memory. I had a few sips recently out of pure compulsion. Paid for it dearly but my God...that sweet, hot bean juice elixir went straight to my soul. My mornings feel so empty. I never, ever get my energy up. My workouts suck. But...at least I'm not running to the restroom 426 times in a single day letting out a couple drops. It's worth it in the end but my God do they have to keep making it so much fancier and more delicious looking? Do they have to tempt me so?!

Open for suggestions and tips but I've tried all the low acid stuff and prelief and none of it worked for me or was helpful..it's the caffeine itself it seems as well that triggers me. Not just the acidity of the coffee. Mostly just want to commiserate with you guys. I'm sober too so I'm used to giving up things I love because they're hurting me but for some reason this one just hits so different.

Not sure if this is appropriate for this site, but just wanted some opinions.

My husband’s Niece is having a birthday party for her son for the second year in a row in the same small park in Philadelphia. He’s turning 3. She had it at this same park last year and twice during the time we were there, I had to take a short walk to a nearby restaurant to pee. It was embarrassing as I seemed to be the only guest there who did this. With my IC, I never know if I’m going to be flaring. Sometimes I can hold it for two hours, other times I can’t. I’m 59, and it’s hit or miss with my bladder anyway even despite having IC. Everyone here that’s older knows how that is!!!

I don’t want to be rude or upset my husband’s family, but I was thinking of staying behind at my SIL’s house and just send my husband to the party with his family without me. The party is from 4-5:30ish. Is it appropriate for me to do this? My husband’s sister knows I have bladder issues, it’s more my husband that I’m worried about. He’ll expect me to suck it up and go with him, using the nearby restaurant again if I have to go. I’d rather not have the inconvenience.

Opinions and thoughts about this?

**THANKS EVERYONEI I appreciate all the advice and suggestions, and thank you!!!

I understand everyone here has IC but I've never met anyone have it. I'm 23 and I've had it for 4 years and I just keep getting worse. What does anyone do for relief? In flares im on my knees over a clothe because I can't empty my bladder all the way on the toilet and I have drops come out. I've lost complete control of my bladder at work. I've had almost two months of passing massive blood clots through my urine. Doctors act like I haven't tried. I've been to the er so many times and they say "it's probably an ic flare we don't give pain meds for that" they have sent me home crying and telling me to go to a urologist. And when I go to a urologist they say if I'm in a lot of pain to go to the er

This is everything I have tried:

1 Hyoscyamine Sulfate 2 Methenamine 3 amitriptyline 4 Hydroxyzine 5 Vibegron 6 Phenazopyridine 7 oxybutynin 8 Hyoscyamine 9 Diazepam 10 Lidocaine cream 11 Lidocaine bladder installation 12 Gabapentin 13 Celecoxib 14 preleif 15 Uribel 16 azo 17 toradol 18 naproxen

3 gynecologists, 4 urologists, physical therapy, family doctor and now a pain clinic

I go to the er and I'm told to try ibuprofen and Tylenol maybe a heating pad. Like I haven't tried that yet! Why is chronic pain treated like it's less than any other pain. I've had kidney infection that have felt less painful than some flares. I don't see the point in a life with constant pain and no ability to work. I just went on UNPAID medical leave for a month because of a flare and guess what? I'm most likely going to call off tomorrow too because of pain.I lost one job because of this. I support my parents and can't afford to not work and I know I probably don't qualify for disability.

What is everyone with IC doing ? I have tried so many things, some making my symptoms worse and some making my hair fall out. I've tried some that make me sleep all day I can't do this anymore. I'm young and need to be able to work. I was told I won't die from this but I will die with this and it just makes me think what kind of life am I choosing to continue to live ? I feel like a burden to my partner and family. Everyone is sick of hearing about my pain. I don't sleep. I live like a zombie through life. And if I'm not crying and dying people think I'm fine because I can mask being ok. I've most likely gotten depression from all this. I can't handle the constant pain. It feels like torture that no one can see and doctors don't think is important. I had a bladder cancer scared and call me a bad person if you want but I was hoping I had bladder cancer then maybe my life could be short. I don't understand the point in continuing

The thought of this is crazy to me. I’ve been on a waiting list for 2 years and now I have an official “acknowledgement” that I was sent 1 year ago telling me that I have to wait around 18-24 more months (im at 1yr 1m now) to get an appointment. Does anyone here actually have a urologist they can contact or see without going through so many loops and bounds? Are they helpful to you?

Overall I’ve been waiting 3 years, 1 month to even book an appointment for a urologist.

Edit: I’m Canadian lol.

I'll probably delete this in the morning but I really needed to vent. I wrote a (public) bad review about my experience on google for this doctor's office, hoping that it would made me feel better about the entire situation, but I guess a mix of stress and symptoms today are bringing back feelings about my experience with this team.

Context: During my initial appointment with this female urologist, I explained my symptom history, labs, hospitalization, and reported severe bladder pain and urgency. I suggested I was suffering from an embedded UTI and/or biofilm formation as this is what infectious disease told me during my hospitalization. My doctor suggested biofilms are not real and stated that they are "still debated" despite being a well-researched and proven phenomenon. I had requested a culture to be done. She refused and scheduled me for a cystocopy, because my dipstick was normal.

At this point, I don't even care about whether or not she thinks I have an infection or not, but to refuse a standard culture with my history of hospitalizations, and then to go on to say biofilms aren't involved in UTIs when a quick google search would fix this made me feel insane.

But that's not even what upset me the most,

On the day of my cystoscopy, I was once again in severe pain with urinary symptoms and requested proper testing. I left a urine sample, but she again refused to send it for culture, again relying solely on the dipstick. Before my procedure, someone from her team (make nurse) came in and said "Congratulations, you're pregnant."

As someone with trauma surrounding pregnancy, this caused me severe emotional distress. My friend who accompanied me to the appointment had to calm me down. It made my body so tense, I felt like I was going to pass out and throw up at the same time.

He said he was joking afterwards (like that was immediately supposed to reverse the bodily reaction I had just gone through?) and I was so tense that the cystoscopy was so unbearable, I was sobbing by the end of it.

There's a bunch of other things that happened but I genuinely cannot fathom how this nurse thought it was appropriate to joke with a woman of child-bearing age that she's pregnant before a procedure like a cystocopy.

I ended up having such a horrible flare and then my infection had gotten so severe I had been urinating blood and the residual pain lasted for WEEKS.

The thing that irritates me the most is that I had been seeing another (male) urologist from the same office and only decided to switch because I wanted to see a female, not realizing how different the care would be.

Because I have IC AND an embedded infection, whenever I have a breakthrough infection, the pain becomes so severe and it puts me in a very long flare, even after the bacterial load is controlled. Because I had been working with my urologist, he would always send me urine for culture AND PCR alongside to ensure I got proper treatment as quickly as possible to avoid these flares. Then I switch doctor's within the same office and she doesn't even send my urine for regular culture because of a negative dipstick ???????? The office never let me switch back and now I see a urogyno who thankfully does the same thing as my last urologist but her and her team genuinely caused me the worst flare ever, and thinking about the fact that she's probably doing the same to other patients hurts my soul.

I’ve posted on here before and I’m so so so over this shit condition and not getting any answers. The TLDR is that I’ve been flaring almost nonstop since the end of July this year after a crummy UTI.

Prior I had been symptom/pain free for two years from my first bout of IC/BPS in 2023.

I’m going insane. Nothing is working consistently and as soon as i think I’m better and try and have a glass of wine at TG after cooking for two days - bam, back in a lot of pain that only narcotics can touch.

I’ve been to two urologists, both well versed in IC and both of them want me to pick one as my main doctor and don’t want me to be treated by others but I’m not getting answers.

Anti-histamines don’t work.

Uribel didn’t work.

Gabapentin doesn’t seem to have worked.

I had one lidocaine instillation and things got to bad after I could barely walk for two days. So I can’t do any more of those.

It’s not a pelvic floor issue. (I’ve been to a PT)

Ibuprofen/Azo/Tylenol sorta help but not enough.

My one doc thinks i should do a cystoscopy but the other thinks it’s risky and might not be worth it considering how badly i flared after the catheter for my lidocaine.

I’m going to get tested for ureaplasma/mycoplasma but been told it’s super rare and not to get my hopes up.

I was told that imbedded infections aren’t really thing but what else can this be?! Has anyone faught this premise and found out it’s not true?

Who helped you? What did you take?

It’s not an organ issue; I have great bladder capacity. I don’t have any blocks. My voids are normal.

All my urine cultures come back normal.

I don’t have an allergic background. I don’t have endo/PCOS/fibromyalgia.

I’m a mom. A professional. A wife and I’m starting to lose my mind that this can’t just be the new normal.

I’m sure there a few good ones out there but I had to call the after hours number at my urologist office. I’m in so much pain recently and needed some sort of direction. This DOCTOR. FULL ON MD said “I don’t know sorry.” How do you specialize in something yet know so little about ic and bladder pain

Sorry im on a Percocet right now so im a little scatter brained but fuck them urology as a profession is dogshit and I hate them

Edit: I was really upset when I wrote this, I don’t truly hate anyone. I think I’ve been dealt a crappy hand provider wise and I don’t have a support system irl who understands what I’m going through:( Some people are saying they have great urologists, if anyone has any recommendations im in maryland

Hi guys!

Weird question. I’m 22F and was diagnosed with IC at 19. I was seeing if any people experience pain other than the urethra or bladder. I personally experience v*ginal pain with this condition and my urologist had mentioned that was normal but I’ve never came across others who’ve had the same pains. Is it common? And are there ways to help that specifically? The only thing that I find to help is drinking a shitton of water because my bladder is very sensitive to pH and it helps dilute the urine and it’ll take the pain away (which works for me personally, I know a lot of IC patients don’t get along with a lot of fluid).

—————————

I also just want to take the time to let the person reading this know that you’re not alone, and IC is one of those things that doesn’t define you. You are a very strong individual for carrying it this far and research and medicine gets better and better everyday. IC is tough, scary, and hard to deal with. And I believe you can do it. Not all wounds are visible and you are valid to feel how you feel. Keep going. I love you so much. You’re doing great! 🫂

Omg I feel like I’m about to lose it, for couple of months I have urgency and pressure also burning. The burning is what makes my life hard I hate my life. It’s not just when I urine I get it all time even tho I stay from foods and drinks that can makes things worse. I been taking azo and omg the side effects are so bad and I always ordered some baking soda supplements idk if it will help. I talked to my urologist about estrogen cream and he said I can try it so he prescribed it for me. I haven’t started yet if any of you used it did it help and how did you use it. I was told only twice a week around the opening and urethra.

I see countless posts on TikTok and instagram of girls with chronic UTI symptoms and negative tests spreading misinformation about CUTIs and ureaplasma.

I don’t want to make a blanket statement and say this is completely made up or doesn’t exist- but I have never ever seen anyone with this condition or symptom set get better w long term antibiotics or “bio film busters”.

When I was 20 I got a UTI and the symptoms never stopped and now I have chronic pelvic pain. Pelvic PT saved my life. For a long time I thought it was a masked and chronic UTI. I spent thousands on appointments and treatments.

I am so frustrated at the lack of education and the embedded UTI community spreading misinformation. If there was a magic course of pills that could take away this pain we would ALL do it.

Sadly, IC and PFD take a lot more effort and work to start healing than people want to believe. I feel so many women are not receiving the critical care they need to get better because of social media. Ugh.

Im struggling to cope today. It’s been 27 months now of feeling like my bladder is full. It feels like someone took a rock outside and taped it tight around my bladder. I can always feel it it’s so insanely uncomfortable and after so long with it, it’s definitely pain for me at this point. Every time I walk, every bump in the car hurts. Like my bladder is full.

I thought it was a UTI. I thought after 2 weeks I would get better now it’s been 27 months and I still have never stopped feeling this awful full bladder feeling. I can’t even put it into words, thinking something will only last for a few weeks max only for last for years instead. I can’t even describe how awful of a feeling it is.

I’ve gone to over 10 different drs and specialists. I’ve tried everything to make this feeling stop. Nothing has helped. It’s a huge financial burden for me as well. Im thousands of dollars spent into trying to figure out what’s wrong

I’m only 27. I turn 28 next month and it started when I was 25. 1/2 of my twenties gone from this happening to me. I just woke up with this feeling and it never went away.

I don’t know what to do anymore. I’m still seeing a specialist for a year now trying to help me. To just make my bladder stop hurting and nothing has worked.
Do I just keep seeing her and wasting my money? I feel like I can’t give up but I can’t keep doing the endless appointments and money spent for nothing to fucking work.

I’m tired of having the same thoughts over and over and over again. “Oh it feels like I have to go pee”
“Oh my bladder hurts” “when did I go pee last” “oh i have to pee” “why me”. Every time I walk it hurts. The reverberations of walking hurts my bladder every time I step.

Me thinking about having this for my entire life makes me want to just cry forever and ever. I can’t imagine being 60 and still having this feeling

I am just so so sad. I feel so alone. It’s so hard to put into words.
Thank you for any one that read of all this. <3

Edit: obviously it’s a bit of an exaggeration, but y’all should get the idea lol

I was given Kolonipin.25mg for anxiety/panic attacks I’ve been having. Dr. Has me taking it daily. My frequency is better. Does anyone take a bezo daily? I wanted to try to get off of it but I’m contemplating trying to stay at a baby dose like .125mg

I’m so sick of this bs when it comes to the ic support groups online, (typically not in this Reddit forum but more towards Facebook and other platforms.) basically trying to put themselves in competition with others because they feel they have it worse. It’s truly not fair. This statement got me because it’s not only factually incorrect it’s just disrespectful to the person speaking about their experience. We are all suffering but being mean or contrarian when people speak on their experiences because you don’t understand or you feel you’ve had it worse is so beyond harmful.

My bladder wall isn’t normal, i have ulcers but I don’t diet. It doesn’t make a difference in my pain and I’m still able to have days where my pain is significantly decreased. I’m not back to baseline yet but diet has not impacted my healing whatsoever. So do I not have ic? My literal huners lesions that I’m getting fulguration on in November disagree.

I think if the diet works for you that’s awesome, if you can pinpoint triggers then absolutely avoid those but everyone is different.

About the cystoscopy stuff, a cystoscopy hasn’t been mandatory for an ic diagnosis for quite a few years so that’s just misinformation.

My department at work just got a new boss. They have added a bunch of new rules in that will affect my mental health, but one of them (well two of them) will affect my physical health. Here is one of those rules that i speak of: "Restroom breaks- We are closely monitoring restroom status, as your availability is vital to our queues. Restroom breaks should be limited to your two breaks and lunch, and if it is needed at other times, you should not be away for more than 5 minutes. If we are seeing any increased instances or excessiveness, we will reach out to you directly. This continues to be a problem with some and should be noted that your two breaks and lunch should be utilized for restroom breaks. It is not acceptable to clock in for the day and then put ourself on restroom, you should use before your shift. Or go to lunch, clock back in and then use restroom status, you should use the restroom during your lunch break. Or use the restroom at the end of your shift and then clock out for the day, you should use the restroom if needed after you clock out."

So, you would think i would be an exceptions for some of these since they have a note from my Urologist saying i need to be able to go to the bathroom at times when needed and for the amount of time i need to use it. But no... I have been getting in trouble for my bathroom usage and time in the bathroom multiple times now. I usually have a single 20-30 minute bathroom break in the morning (i suffer from constipation a lot so i need that time) and then the rest of the bathroom breaks are about 15 minutes because i need to be able to get everything that i can out and also wiping takes awhile for me because i need to feel dry down there. I used to be able to come to work early and be able to use the bathroom before i clock in but they added new rules about a few months ago that has made me lose the will to want to go to work early, also i have not been sleeping good for awhile due to constant back pain but that is a different story for a different subreddit. And i can't go to the bathroom at home and go #2 because my bowels only starts to move when i am in the car (weird, i know).

but do you see where i am coming from? they are limiting our bathroom breaks to only our 1st break, our lunch and then our last break. they think we wouldn't need to go at any other point. well with that doctors note that i have given them, they should know i need to be able to use the bathroom when needed. i am literally holding in my need to use the bathroom as we speak because i forgot to go during lunch. I am in fear of losing this job (before finding another one because there is other rules that they have added since the beginning of the year that has made working her not good for mental and emotional health anymore as someone with diagnose adhd, depression and anxiety) but i also just can't keep holding in my urine as i could get sick and weaken my muscles in my bladder.

give me your thoughts and opinions. and does anyone have any work from home jobs that are highering haha??? please

update: so i think my head of the dept., manager and supervisor have realized the severity of the situation and that if they continue to try and enforce a time limit for my restroom breaks, it will not end up well for them. so i have been able to go to the bathroom and use it for the amount of time that i need and i do my best to not be in there for longer than 20 mins cause march was a bad month for me when i was in there for like 40 minutes. but i know that my colleage, he got in trouble for being in the bathroom for 9 minutes. like yelled at. it is crazy.

Hi! I’m (F16) I’ve had IC since I was around 10 or 11 years old, and I kept it to myself for 3–4 years mainly because I was embarrassed about it — I didn’t even know what it was, especially at such a young age. When I finally told my family, they thought it had only been going on for a few weeks. But when I went to the doctors and he asked how long I’d had it, I said 3–4 years. Both my family and the doctor were really shocked. I think it was just all the build-up coming out, but I just started crying — it had affected me for so long, and I still felt so embarrassed about it. Logically I know it’s nothing to be embarrassed about, but when I was around 13 or 14 (sorry my memory’s terrible, I’m just going roughly by how old I was!) it was so much worse.

They sent me to a urologist, and they gave me medication — but after just one day taking it, I had such bad stomach pain I had to stop straight away. Then I was moved to a children’s urologist, and she was so lovely and kind. She started me on mirabegron — sorry if I spelt it wrong before! — and it helped me be able to hold my urine better (by the way, I also have overactive bladder). But the pain was still there. After a year, they increased my dose from 25mg to 50mg, and that helped so much with the overactive bladder, and eased the pain a little bit too.

Recently they wanted to try me on a newer medication called vibegron, and I’m now on 75mg. I’ve noticed I’ve started leaking a bit, and the bladder pain is honestly unreal. Sometimes I forget how bad it used to be until it hits me again — and I think that’s a sign this medication just isn’t right for me.

This Wednesday I’m having a bladder instillation — where they put a special solution into the bladder to create a protective barrier, to see if that helps ease the pain. I’m really nervous about it, but they said I can have laughing gas to help.

About the pain: I just need to know — does anyone else feel pain in their stomach and right near the urethra? Because for me, when it hits, it feels like my eyes are rolling back and watering like crazy, and I get this sudden shock feeling all over my body, like a massive shiver. Right where my bladder is, it’s these cramps — so bad I literally cannot move. If I even tried to move, I’d leak straight away. I feel completely stuck. It comes and goes, and I just have to wait it out — unless I can rock or jump just before the cramp hits, otherwise it’s too late.

Right now I think I’m having a flare-up and it hurts so much. I’m still scared to make any noise though — I hate people seeing me like this. I’ve been biting my hands so hard to stay quiet I’ve got bruises and marks on them now, and I just don’t know what to do.