Hi I’m F16 I have interstitial cystitis and overactive bladder, I’ve been getting bladder instillations for around 5 weeks and I’ve noticed at the begging they were kinda working and I was so happy but now it’s like it’s stopped working completely and I’m devastated and I’ve even noticed I’m starting to leak a bit which hasn’t happened in a long time and I feel like I’m stuck with this pain for all of my life and idk what to do.
Say what ever you like is there anything u want to take advantage of this post and get off your chest???
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I’m gonna be honest I’m F16 so I’m not planning of having kids any time soon but it’s always got me wondering but also worried about it all.
Because I’ve always wanted to be a mum when I’m older and have kids but with my condition ( interstitial cystitis and overreactive bladder syndrome ) I didn’t actually know how kids could affect my own body. Because ik pregnancy can affect people even without any bladder problems and I’m only young so I don’t know how it would affect me? I’ve talked to my sister about it and she was kinda being very pushy about having kids because I said if it has a majorly affect or life long affect on my health/bladder I won’t have children no matter what but I would give surrogacy or adoption a try.
But she kept pushing for me to have kids and it got kinda irritating because she doesn’t understand what I go through on the daily because of my condition and that people think it’s just easy work because I’ve dealt with it for 5-6 years it’s annoying, mainly because everyone does it to me that they undermine my condition like it doesn’t affect me but the only thing is that they have never actually seen me in the pain I get daily because I’m good at hiding pain (just not flare ups cuz they HURT), but also I stay in my room a lot so no one sees but I feel like they talk to me they act like know everything about me and my condition.
I can’t say it isn’t as bad as pregnancy because idk how pregnancy is like? but my sister whilst she was pregnant said stuff behind my back because I was going through a flare up where it HURT it felt like I couldn’t stand up straight I didn’t want to move and cause me really bad back pain and it went x10 worst when I got the cramps. But then she was going around to everyone saying ‘I’m pregnant and I have a baby pressing on my bladder and she’s crying over a little bit of cramping and making it out like she needs the toilet constantly I need to go more then her ’ and that hurt so much because again I physically couldn’t move and yes pregnancy is hard but I didn’t choose to have this and she choose to get pregnant, overall this is a rant but also wonder if I could have kids without if affecting me long term. Thank you for reading ❤️
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’ve been getting them for around 2 weeks and I’ve noticed something it gets rid of the pain for 1-2 days (in which Ik it gradually builds up the more I do them) but I have like a pressure every time I need to go idk how to explain it but the pain in gone but then I feel like my bladder is like forcing me down where I can’t move and I want to know if that’s something I should bring up to my doctor?
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I’ve been struggling a bit lately, mainly with loneliness and paranoia and just feeling down but for some reason why everything I eat I feel like I want to throw it up. I just don’t know what to do pls help.
I am getting a bladder instillation tomorrow and I’m really nervous just in general but also the fact that she’s going to see my private parts btw I’m (F16).
I understand she’s a doctor and she doesn’t care but I’ve always been the type of person that even hates wearing revealing clothes let alone anyone seeing underneath. Ik I have to lose some dignity for this but I’m just a little nervous haha.
I’ve struggled with sleep ever since I was a child. I used to stay up all night and cry to my parents because I just couldn’t sleep. No matter how early I get up — even if I’m up at 6:00am and active all day — I still fall asleep really late. Yesterday I woke up early after only 3 hours of sleep, swam all day, and still went to sleep late. Everyone says “just go to sleep when you’re tired”, but that’s exactly the problem: unless I’m completely exhausted, it takes me hours to drift off. Sometimes I just stay awake all night for no reason at all. I try so hard to sleep but I just can’t. It’s so frustrating because it affects my whole life — I want to do things, but my sleep pattern stops me.
Thank you for reading and I’ll be grateful for any help on how to fix this!! ❤️
Idk why but I crave to be hugged and wanted too but the min anyone hugs me I feel nothing, no connection or anything so I just feel alone all the time craving for something that I can’t feel.
I don’t know, I feel like I contradict myself a lot — it’s always been this way. I can feel really down, but the second I have a good day, I start feeling like all the hard times were fake, like they weren’t even real or serious. It’s so confusing.
For example: when I’m with family or friends I can have such a good time — today especially, I had an amazing day with my friends. But the moment I’m on my own, it’s like everything hits me all at once.
When this happens, I feel like I’m dissociating for hours. It feels like I become a completely different person, stuck deep inside my own head. I blast music loud, and it’s like I disappear — time flies by so fast, and it’s the only thing that makes me feel less alone. I don’t really have the words to explain it properly.
Even when I’m out with people, I get lost in my own head — I know it sounds crazy, but I get angry, sad, or even burst out laughing at things only in my imagination. Once I stayed zoned out like that on my bed for 4–5 hours straight, didn’t move at all.
When I finally “snap back” to reality, I’m shocked by how much time has passed. It feels like my brain does this to distract me — I do it without even realising — and it’s been happening for years. I just don’t understand what’s going on with me. And one more thing because I’ve done it for years I can’t remember ALOT from my past the min you go past the age 12-13 gone can barely remember a single thing.
Thank you for reading ❤️ greatly appreciated if you can help me understand :)
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.