u/elhazelenby

Btw I'm going to be mentioning female anatomical terms to make it easier to explain.

To keep it short I have been having issues with taking longer to wee (often 5-10 minutes or sometimes more than 1hour) and twice I've been in retention. It's been hell. I don't know what's causing it, as I had an ultrasound a few months ago and my bladder and kidneys worked fine when my bladder was full and then emptied. I am 2.5 years on T, pre op and my dick is pretty large so I could see why it could "hide" or make it harder to find my urethra.

If you've never had a catheter in, it's agony getting it in. Forget the coil/IUD and vaginal atrophy, this is worse. It hurts not being able to wee for hours, it's like pressure building up. After it's in I've had pain for a while on top of the chronic lower abdomen/pelvic pain I've been having which is a whole other thing and I've been in severe pain from that often. Even the frustration of not being able to go and trying to relax enough to go is painful in of itself. When it's actually in it's actually not that bad and I had the last one in for just over 2 weeks and lived life. I took paracetamol or cocodamol (paracetamol & codeine) sometimes and was fine.

I had a catheter in March this year. Was already in a&e because of seizures. At one point I'd tried to go on the commode and when getting back to the bed I fell and had some more seizures. They got me to drink plenty of fluid and try multiple times because I am 25 and I hadn't had one in before but I just couldn't go. Bladder scan showed 1.5L (ended up draining 2L when the catheter was in, how that's possible I don't know). I made sure to tell them I am trans.

A female HCA put it in my vagina. That still hurt because I have vaginal atrophy. Then a male HCA tried and couldn't do it, and eventually they got a male doctor who apparently is really good with catheters and he got it in. It was so embarrassing having 3 different people in the room zero-ing in on me while in agony. They said it was difficult because I had trauma to the area.

I had another catheter put in last night. I was retaining for 12 hours by the time they finally got it in, had 665ml in my bladder. Was already there for seizures again. Last week I couldn't go for 2 hours and I've had a catheter scare a couple of times since march. I couldn't go at around 8pm and I hadn't been since 12pm when I got up. This time I said I had a catheter in March for 2 weeks and have had issues with weeing for nearly a year. They said that they're gonna have to put a catheter in and I said yeah if I have to, I have to. I'll put up with it. I got asked if I took ketamine, I said no. I'd taken other drugs nearly daily that made things worse but not for over 2 months and I was on a medication that worsened it and went off that months ago.

A male HCA came in and every time he'd put it in, it kept coming back out. I asked to make sure it's not in my vagina because of last time and he said he hadn't and said I'll speak to the doctor in charge. A male doctor comes in 1-2 hours later and finally gets it in. It didn't drain for a while because the tube was cocked up at an upward angle from my trousers.

I'm sure I'm not the only trans man on hormones or even only person with a vulva who has a large clit (which I always did even before T) and had a catheter in but every time it's felt like it was difficult because of my anatomy. Ironically the only woman who tried failed. Part of me is hoping that it's not just because I'm trans and it's because female catheterisiation is more difficult but my experience with having them put in has not been great.

I've seen stories of a lot of other people who have also never been told about their diagnosis and had to find out later so maybe someone has some insight.

I am 25M. When I was 20 I only recently started transitioning and I was diagnosed with EUPD impulsive type and the CMHT didn't tell me whatsoever despite telling my CPN many times I wanted to be assessed and know what's wrong with me. From what I understand EUPD impulsive type means I lean more towards self harm/harmful behaviour and unstable mood, plus aggression/anger outbursts (but to be honest I think that's just from having autism and people misinterpreting me).

Nowadays I am cis passing, 2.5 years on HRT and I don't often tell people I am trans but mental health services know because I've been involved with them in some way since I was 17.

I found out because the mental health liaison team at a&e put it on their assessment letter to my GP randomly last year (usually they only put autism or Asperger's if anything).

I was actually never told of a mixed anxiety and depressive disorder diagnosis done at the same appointment or panic disorder diagnosis when I was at CAMHs in 2018. They also diagnosed me with Asperger's without telling me when I was already diagnosed with autism since I was 4 but that's neither here nor there.

I've since tried to ask for an explanation from the CMHT who diagnosed me more than once but they never did. I've seen the original assessment where the psychiatrist diagnosed me.

Since then I've been diagnosed with combined ADHD and recently I've been deemed At Risk Mental State and told I have complex trauma and confirmed I have paranoia, which has gotten worse over the past few years but began when I was about 4 years old. They hardly mention the EUPD diagnosis but they mention my autism. I guess I just feel uncertain when people aren't direct about it. However it makes me wonder if it's just me having ADHD sometimes or if I was diagnosed only because I was Afab.

I've read quite a lot about it and I relate to some of it. I have dealt with self harm a lot of my life, disordered eating (trauma/abuse induced), hair pulling and intermittent substance abuse.

My parents were abusive to me and to each other my whole childhood and I have been in temporary accomodation many times because of that. I was bullied a lot at school and at home. I'm also seen as vulnerable because of autism since I have been taken advantage of many times financially (including by my mum) and sexually.

I attempted suicide more than 15 times in the past year and a half, the last time was only about 2 weeks ago. Some of them are out of impulse or weren't planned. I also struggle a lot with emotional dysregulation and have gotten help for it earlier this year.

My older sister was also diagnosed with BPD when I was 13 and was sectioned. She is textbook BPD. Part of my confusion is that we aren't very alike, in fact she is quite abusive and that's why I've not talked to her for about 2 years.

I've never met another man with this condition besides a really irritating co worker at my first job who is also a trans man and this was before I knew of my diagnosis.

3 years ago I was obese (BMI 37.7) and was binge eating almost every day for 2 months to get to that weight. My ankles hurt all the time walking (at 22 years old). For the past few years at least before losing weight I have had resting tachycardia on many ECGs and I have high blood pressure. I didn't experience POTS or any other dysautonomic symptoms much at all despite this.

I started losing weight and I'm still 30kg down. I gained 10-15kg in 2025 due to losing my mobility, balance and not being able to exercise as much as I used to be plus binging and comfort eating from the stress of my health failing.

Even now I am only barely overweight according to BMI and I started having these issues at a healthy BMI. This year I have stayed between the same 5-7 kilos.

I didn't lose the weight healthily at all. I have heavily restricted, thrown up food, overexercised (walked way too much even when I was tired), and have taken pills to lose weight which aren't prescribed. I have had issues with food since I was quite young and I still do some of these things now.

However when I have eaten more normally, not thrown up, don't take any pills, my blood sugar is normal, etc. My symptoms don't improve very much. I still struggle to walk properly and I often feel like death when I'm standing, walking and sometimes sitting about in my flat. My HR walking has gone as high as 181 and is often 140+. My heart rate at rest has been higher than normal for a few years and it's still high at rest, same with my blood pressure.

There's also my bladder issues which started late last year. I never had issues with that in my life when I was obese.

When I ate more normally before my body would stop having palpitations and all this stuff but I think losing so much weight in a bad way and a lot of it in a short amount of time may have caused some kind of change in my body other than my appearance.

Last week I had a few seizures and I could remember having seizures but I cannot remember being in the ambulance. I had some more 2 days after and I remember having the seizures at a hospital car park and being taken via trolley to the hospital to the entrance but I can't remember being taken to the bed I was on.

I was out drinking a few days ago. I already had a few seizures earlier that day before I drank but I felt better and wanted to go out.

Basically I drank a lot and went to get a taxi home and had seizures. I lost my glasses somehow and according to the a&e letter I was unconscious. I don't remember anything between first collapsing and not long after arriving at the hospital. All my blood tests were normal and they did a CT scan of my head and that was normal, got fluids and was sent home after some sleep.

My memory goes bad after some seizures but I never lose consciousness usually. I can remember seizing after some time after the post ictal phase but on these occasions there's parts of what happened I have no memory of and I was not given rescue medication on any of these instances.

I'm 25 and in the UK

I don't currently use it at the moment, but I've been dealing with intermittent daily use of Pseudoephedrine as a diet pill. I've also overdosed on it to end my life twice and the first time I got drug induced psychosis. I currently self medicate with semaglutide but I'm not obese or diabetic. I have issues with food.

I just feel I'd be out of place at services who usually help hard drug and alcohol users.

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For some reason for the past 6-8 months during a seizure aura or between seizures I get a violent repeated jerking of one arm side to side but it doesn't happen at any other time. It's not constant, it usually lasts up to a few minutes and when I walk or stand. It's the side I usually use my walking stick (the right) and before I started using the stick I was using elbow crutches and from what I remember only my right was affected then as well. I also often have heavy feeling legs when walking, which doesn't happen outside of this either.

Outside of seizures I have no other (possible) functional symptoms except maybe for a few months I've been getting frequent leg twitches but some days are better than others. I don't think that's exclusively functional though.

I haven't been to the GP about either of these things specifically, I have become weary of doctors due to gaslighting and because I was poisoned by medications that made me disabled. I just want to know if I'm the only one or not.

Basically I have been doing voluntary work for a small regional charity here in the UK since October 2025. I'm trying to get experience because I'm sure many people know already getting a job as a graduate (I have a portfolio and both a bachelor's & master's degree) is very difficult.

Today I was asked to tweak the post copy (Facebook) I wrote for them and also the text that appears in social media images and the suggestion was written using AI, em dashes and all. Of course I agreed to tweak it because it's my job but I will write it manually. Maybe the suggestion was a guideline. I have autism so while I think I'm good at writing posts with the right tone and vocabulary, it could have come across a bit differently by mistake.

I just find it a bit insulting other than just them writing a suggestion themselves but they're a small regional charity so I can't be too mad I don't think. I've been getting a lot of experience in social media content creation and marketing including research and copy writing. If I was getting paid, I think I would be pissed off even more.

They also have clearly used AI for some flyers on social media, even though I've created a lot of flyers and social media images for them. Not saying I'm Paul Rand or Seth Godin or something but it annoys me a bit that they didn't ask me for changes. Ultimately I'm only "contracted" to work 2-5 hours a week but it's I'd rather they just ask for my input. Maybe that's selfish but I just don't like how this sector is going with content creation.

I already posted this on an ftm subreddit but it got no replies.

I am nearly 2 and a half years on T and the coil never stopped my periods. I increased my dose when my T was on the lower side (10nmol/l to 19nmol/l after the increased dose, it's now 22nmol/l) and that didn't help. I had a coil in for 3 years (kyleena) when I started T then after nearly 5 years got it changed (Mirena) last October which made no difference to my periods. Pre T my last coil stopped my periods.

In late January I was prescribed progesterone birth control pills to stop my period and it worked. I've been on it ever since. I was given the pill nearly 2 years on T. I plan to continue taking it regardless of my decision because I have sex with men.

I have an appointment with the sexual health clinic next week because I'm considering taking out my coil due to severe constant pain and pain after orgasm and I take painkillers almost every day for it. It often feels like I'm being stabbed.

I've exhausted all treatment options for this including suspected PID, STI tests which were clear, UTIs, and a clear ultrasound which showed it was placed fine. I have vaginal atrophy and I've been using estriol cream for months which doesn't help the pain. I have a gynaecology appointment but it's not until November. I had a bladder ultrasound because of new bladder issues (since late last year) and my GP thought maybe that was the cause but the ultrasound was fine, I have a referral to see them again.

I am nearly 2 and a half years on T and the coil never stopped my periods. I increased my dose when my T was on the lower side (10nmol/l to 19nmol/l after the increased dose, it's now 22nmol/l) and that didn't help. I had a coil in for 3 years (kyleena) when I started T then after nearly 5 years got it changed (Mirena) last October which made no difference to my periods. Pre T my last coil stopped my periods.

In late January I was prescribed progesterone birth control pills to stop my period and it worked. I've been on it ever since. I was given the pill nearly 2 years on T. I plan to continue taking it regardless of my decision because I have sex with men.

I have an appointment with the sexual health clinic next week because I'm considering taking out my coil due to severe constant pain and pain after orgasm and I take painkillers almost every day for it. It often feels like I'm being stabbed.

I've exhausted all treatment options for this including suspected PID, STI tests which were clear, UTIs, and a clear ultrasound which showed it was placed fine. I have vaginal atrophy and I've been using estriol cream for months which doesn't help the pain. I have a gynaecology appointment but it's not until November. I had a bladder ultrasound because of new bladder issues (since late last year) and my GP thought maybe that was the cause but the ultrasound was fine, I have a referral to see them again.

I don't want to be detained or be seen as crazy. I have nearly finished an assessment with them.

I wasn't arrested. The police were called because I didn't want to go into an ambulance and didn't consent to medical treatment because I think healthcare professionals are out to kill me and I tried fighting off multiple people (including security guards who initially saw me and called the ambulance) and was deemed a risk to myself as I tried to hurt myself and was having seizures & dizziness (normal for me).

They forced me onto the ambulance and to the hospital but I walked out after they left me there. I had an oxygen mask on briefly during a seizure. I also tried to pull out a knife to protect myself from the paramedics touching me but it was taken away. I also kneed someone in the crotch trying to restrain me. I didn't want to tell them my address because it seemed like a trick and I didn't want medical treatment and they said I lacked capacity even though I said I know it, I just didn't want to tell them. I was fully lucid (which for my seizures does vary).

I can't really talk about this to anyone I know because no one seems to relate to what's going on with me or they don't understand what I'm talking about because they're ignorant or acting stupid. My GP wanted to increase an antidepressant that was making my seizures 1000x worse and arguably started a lot of it in the first place. I told them my last increase already made them come back after 3 months and now they're very frequent and they've gotten worse. They still wanted to increase it "to reduce my seizures" "because it's a mental health problem" despite my physical triggers.

I have been getting more and more health problems for the past 1.5 years. Lately I've gotten I believe shortness of breath. I've had an and off cough for months which is often before or after a seizure(s).

A lot of it is stuff 25 year olds shouldn't be getting such as frequent dizziness, confusion (walking or wandering in all different directions, half in the road, not knowing where I am or what I was doing), falls, bumping/falling into things, even with a walking stick, qnd bladder issues. I also have frequent seizures, especially when I'm walking and/or dizzy.

My heart rate goes high when standing/walking and even at rest some of the time it's over 100 for a while. There is proof of this which I have pointed out.

One part of me is terrified at what's going to happen and being scared of being in hospital because healthcare professionals want to kill me and make me insane. They repeatedly gaslight me, I've been accused of faking and been told to stop having a seizure. They keep telling me it's all my mental health when it's clearly not. My mental health gets better and it's still all there. The other thing is there is nothing like services or knowledgeable GPs even available for some of the kind of issues I've been having anywhere near me.

One part of me is not even concerned about what will happen to me because I'm going to be dead anyway and I'm going to be dizzy and have seizures anyway. I can't fight it or stop it anyway.

I just can't do anything now. I already struggled with many disabilities before. Now some of those are worse especially because of the seizures such as speech problems and verbal shutdowns from autism, meaning I cannot talk when I'm overwhelmed or really struggling with my symptoms.

It's made my mental health worse than it was. I've tried to kill myself at least 15 times after I was over 6 years free of attempts and it keeps coming back and forth in my mind. I know this is what the NHS wants but it's hard to cope. I hate being out of control of my own body so frequently.

I have a lot of issues that haven't been helped much by many different things and people don't understand me very well or know what to do with me. 2 antidepressants ruined my body and mind and I won't let people poison me again with them.

I've had 4 appointments and the assessor told me that I have 2 more appointments left. She has extended it to space things out because I have autism & ADHD. I also veer off a lot and go on tangents because what has been happening is something I've had a lot of messages about from articles and YouTube. Every session has felt very intense. A couple of sessions I felt like she was in on everything that's happening.

I talked a bit about being raped during today's appointment because I was asked why I don't like being touched so much, whether it was just autism. I find it very hard to talk about stuff because it makes me so angry or shutdown and defeated. I don't like talking about it because all of this stuff scares me. I just want to stop feeling scared of stuff and hallucinating every so often plus just how out of control I feel. When people challenge my beliefs I either get very angry or I shutdown and can't talk for a few minutes (I have this from autism generally sometimes) because not being listened to triggers me from last trauma.

I know I have to keep going because otherwise I may not get any other support mental health wise because people usually don't know what to do with me because I have a lot of issues including the audhd. The local psych ward said they wouldn't admit me because of autism even if I was risky enough.

There's a chance the EIP will also discharge me and I'm left on my own but I just feel desperate even though I don't think I am having psychosis but I've never gotten help that made the paranoid stuff better even though it's linked to trauma (I've been told many times it's just anxiety or trauma but a mental health worker suggested to talk to the EIP so it's confusing now). It's just gotten worse. I've been through 8 years of finding help for stuff and I've had paranoia/feelings of being unsafe since I was 4/5 and hallucinations since I was 13 and now I'm 25.

I had an EEG done in December last year, but it was during the time I didn't have any tonic clonic or focal type seizures for 3 months. It came back normal and that's why I got an NEAD diagnosis from the local hospital (before the EEG neurology at a different hospital thought it was likely functional). Not sure if I had any absent seizures during that time because I didn't realise I was probably having absent seizures until more recently but I think I've had them longer than the other two.

I still went to the EEG anyway even though I thought "Well that was weird but I guess I don't have seizures anymore". I think maybe I had some movement during the light section but not sure. They said it was normal.

I wrote an email to neurology on 5th and mentioned that I want a redo of my EEG or 24hr EEG (to catch my seizures more easily when walking/standing) because of this. The consultant didn't respond to that part of the email, only the part where I mentioned that my symptoms of POTS are the primary cause of my seizures.

On 9th he just said "I advise he can discuss the possibility of POTS with his GP. Neurology are not the appropriate specialty for diagnosis or advice." I wasn't asking for a POTS diagnosis or advice on pots/dysautonomia, I was sending videos of my seizures caused from active stand tests and also the log of the tests including BP/HR measurements and sent an article from healthline about autonomic seizures. I have already been trying to get tested for POTs or dysautonomia and it's been very hard because the GP isn't taking me seriously and there's not many if any services near me that do testing for it.

In June I already contacted PALS at neurology because they refuse to put forward my appointment after my seizures got worse and more frequent and multiple doctors have asked to put it forward due to this and they said no because it's non Epileptic. I missed an appointment with them in February because I was admitted into hospital for my seizures and the hospital lied about being able to take me to the appointment with patient transport like they promised the day before. Now it's at the end of September. I've been taken to a&e multiple times since then including needing medication on some instances because my oxygen was low (into the low 80s) and the seizure wasn't stopping.

I had to call PALS again a couple of weeks ago because I hadn't heard back from them in a month about my complaint and I got told that they would make sure they looked at it again. No response so far.

I'm not saying that I don't think I have non Epileptic seizures exactly but a few paramedics thought I have both and some paramedics didn't know whether it was epileptic or non epileptic or not (at one time they thought I was in status Epilepticus) and I just think using a result from a test when I wasn't having seizures (that I know of) at the time is a bit unfair. If anyone has any experience of this I would appreciate it.