u/Technical-Custard512

I know I'm supposed to be happy to finally find something that gave me relief. And I am. But its accompanied with grief. It's not a complete relief but it's a big reduction in symptoms, and for the first time in years I can lay in bed for 1h+ without being tortured by a constant urge to pee.

A lot of people commented in my previous post (https://www.reddit.com/r/ChronicPain/s/9SRZII6EsU) on how I'm not even trying properly to fix my issues. Which I found quite weird because I purposely didn't go into all that stuff because it's basically not the point of my post. I was just trying to vent since this is a free space for people with pain to go to. I wasn't looking for advice (some advice has been helpful, so thank you). I have gotten some passive aggressive comments from people who assume they know better about my situation.

At the end yall strangers. You don't know me. But you assumed things about it, which is ok, it doesn't really change the truth that I have tried enough. But here it is. To everyone thinking I'm just someone who likes to be miserable and suffer. I live in one of the most underdeveloped countries of the world. The medical system here is useless. I know it sounds arrogant but it honestly feels like doctors don't know any better than you. Especially in the way I am suffering (pelvic floor and urinary issues) it's even a more neglected field. There have been cases of people dying due to insufficient or wrong medical care. it's a known fact that the medical system here is very bad. but I have really got to witness it after needing help desperately and being dismissed every single time. I have gone to many different urologists. All of them were considered "top" doctors in my region. I remember I asked one of the doctors for iron pills for my iron deficiency and he said that pill is only used for pregnant women. So my dad didn't even pay for me to get it. Plus most doctors dismissed my case and just gave me antibiotics, despite telling them I have taken antibiotics for the 10th time in a span time of a year and it didn't do shit. They keep giving me antibiotics. Most of them don't even wanna hear what I have to say. They all acted like my problem was so easy but no actual fix. I have done many culture tests and there was no bacterial infection found everytime, just an abnormal amount of white blood cells. I also have done kidney function tests and my kidneys work fine. My pee isn't abnormally acidic either. I have done ultrasound examination and there were no abnormalities found. I have taken supplements (self prescribed)that were recommended for people with overactive bladder and interstitial cystitis, such as pumpkin seeds, d-mannose. And other natrual relaxants like ashwaganda and glycine. I supplemented on vitamins b since they have been proven to be helpful for the CNS ( bc my issue could be neurological). As of recently I don't have any deficiency except iron and vitamin d. Which I'm supplementing on currently. I have tried with diet. It does get a little better if I'm eating the healthiest. That and the only thing that gave me the most relief was when I was doing 3 day fasting in hope it cures my bladder. By day 3, it gave me the most 2 pain free hours of my life, right when I woke up. But after the fasting it went right back to where it was after. Plus I can't do fasting often because I already suffer from eating disorders and weakness. At the end I resolved to other psychological techniques to help people with chronic pain, such as one that's called "open focus". No help but it was also hard mentally to do so i stopped soon after. Magic mushrooms is something I wanna try but again it's illegal and unavailable where I am.

So after trying for so long. I gave up and I stopped seeking medical help completely. I genuinely have no hope that doctors here can understand or help. I do have hope in physical therapy but I have no idea how I'm gonna get that here. I have been an active member of a facebook group of women suffering from overactive bladder all over the world. And most of them were hopeless as well and had no luck with medical doctors. Which just made me more hopeless because if even women from the USA and the UK and Australia had no luck fixing it or improving it radically, this meant I definitely don't stand a chance from where I am. A lot of women had some relief from injecting botox but it's not even an available treatment in my region. I would have to travel but above all I would have to be referred by a MD. Which I'm not gonna get. the most my dad is willing to travel is another neighborhing country, which isn't better by far. So even that I don't have much hope with.

And yes, I'm at an age where I can advocate for myself. But my parents themselves are pretty helpless. They know I need the bathroom every 15 minutes, and perhaps I'm suffering a little. They just don't know it's every second of my day. And I don't think they'd actually care. Because again, I'm functional on the outside. My family are very basic people and they don't have much awareness other than what they grew up with. My mom is a very weak and traumatized woman herself. So yeah. That's pretty much it. I'm still trying, I just don't think medical help in my country will get me anywhere. Someone in my previous post suggested an OTC medication "AZO" I'm going to purchase that tomorrow and hope it helps.

I have been in pain and extreme discomfort since I was 14. Not a single pain-free day I have experienced. I do try to get distracted and forget about it, and that's about the most comfortable I can get. I have a constant feeling of one of the body’s most powerful visceral urges, an overwhelming urge to pee that never stops. It creates pressure in the area, and makes me extremly uncomfortable and unable to do anything else. That and an overwhelming fear and anxiety about leaking. even when my bladder is technically not full, it feels like it's full. So trying to rationalize the fear/anxiety can only do so much. That and pain, burning and stinging in my vaginal muscles that never stops caused (i believe) by an ongoing state of involuntary muscle contraction and tension. It makes me wanna rip my vagina apart. Trying to lay down and relax for a few mins without a high stimulant distraction is an impossible task. It's not as much the sensation of pain that's overwhelming, I'd say my pain is moderate. It doesn't make me wanna scream or cry on the floor in pain. It's more so that it puts me in an extreme discomfort and hypervigilance state, it makes me feel very vulnerable if that makes sense, because I feel the area of my bladder, and private part in general is very sensitive and vulnerable to me. It's like I would rather someone hit me on any other part of my body but not in that place. I'm unable to focus or chill out. That has been my existence for the past 5 years.

It really hit me today that my family who I live with under the same roof has basically no idea of what I deal with every second of my life. They know about my issue with endless trips to the bathroom and how my bladder forces that on me but they don't really realize what dealing with that feels like. We have two bathrooms so I always use the bathroom that's in an isolated area of the house because it's the one no one uses and I need that. So they don't really get to see how many times I have to go. There has been a few times I was using the bathroom everyone uses and my mom basically became aware of how bad it really was and freaked out but still didn't take it seriously. She forgot about it as soon as I returned to using my own bathroom. I do realize a part of that is my fault for not verbalizing enough how it feels. I don't even know why I never did to be honest. I think it's the fact that I can look mostly functional on the outside and I'm not really in extreme physical agony. The only time I talk to them about it is when I wanna see a doctor in hope they can help (they usually just give me antibiotics and have no idea what's going on).

There was one time I was in the car with my dad and my uncle driving to go see a doc in another city. My uncle would ask me if I need the bathroom "now", I told him that I already always do and have felt it the entire whole trip, I just deal with it because I know my bladder isn't actually full and there would be no risk of leakage. He was taken aback and asked my dad as to why he would wait for so long and not deal with this as an urgent thing. Mind you my uncle isn't the type to be very sympathetic. He's the type of man who only focuses on his business and money and social status. But he realized how fucked up my situation was.

Overall I just never tell people how it feels, my friends have no idea, my extended family has no idea, no one actually knows. I did try to tell a group of friends I had in high school but it got completely dismissed. I do realize it's the type of thing that people don't really get why it's a big deal. But it sucks because it feels alone. My grades have dropped down. I used to only ever get A's. Now my concentration skills and memory are really bad. Motivation is mostly gone. I do try to chase my dreams and make the best out of my life, but it's just really really hard, especially when I look back and realize how much of my life has been wasted because of this. I'm a fraction of the person I used to be. Really really fragile. Dissociation is my only coping mechanism. Sleeping is hell for me because I wake up from the slighest sounds or movements and once I'm awake I can't fall back to asleep, even if im so sleepy. It blows my mind to think about how most people actually don't have to go to the bathroom that often. It just seems so different.