u/Ashamed_Swan_5349

Hope I spelt it right lol.

Long story short, I’m 25F, started having collapses just over a year ago, and after a ton of different tests including a tilt table test, heart ultrasound, 24hr blood pressure monitor, blah blah, one cardiologist said he didn’t want to diagnose me with anything because he worried I have some kind of deeper underlying issue, and the second has said he has no clue what’s wrong with me outside of it being some kind of autonomic dysfunction, and diagnosed me with dysautonomia.

I mean, I don’t really mind the specific label as I would much rather admit they don’t know and diagnose me with that over trying to apply the wrong one (one cardiologist would not stop trying to insist it was POTs). I knew it was probably going to be difficult to diagnose me as my collapses don’t really sound like typical collapses.

I’m just already wondering if now I’m going to spend the next few years having to explain what that means to new GPs and doctors and anywhere I apply for disability support. Has anyone else been diagnosed with this and what has your experience been?

Apologies for the kind of long rant.

I'm 25F in the U.K, and around this time last year I started experiencing collapses upon standing from laying down or standing and stretching. My collapses are a bit odd as they occur with no warning or symptoms. I just stand up, then i lose control of my body and collapse, usually for 5-10 seconds. I get a weird feeling in my chest and ribs, and my thoughts turn to gibberish though I stay conscious, then I'm okay.

I also have had a very high heart rate (like just walking the same walk I do everyday will put my hr up like 60bpm from my resting hr) persistently for years despite doing lots of cardio, and high blood pressure despite not drinking, not having caffeine, not smoking, eating pretty clean etc. I am overweight and have a history of blood pressure issues and sudden cardiac death in my family though.

As said before, I've seen a wide range of doctors and had quite a few tests, mainly as I moved counties late last year which disrupted everything. In the first county I had much more thorough testing and eventually the cardiologist concluded that while I technically met the criteria for orthostatic hypotension, that he didn't feel comfortable diagnosing me with anything, as he believed I had a larger underlying health issue. This was because I am also hypermobile, and suddenly developed peripheral neuropathy and PCOS last year too at random.

When I moved counties further up north, my new GP didn't know what to do with me, and referred me to a blackouts clinic instead. These collapses have been super disruptive to my life so I just kinda wanted answers and maybe medication so I can get back to normal, so I went along with it. The cardiologist I saw there was super dismissive and sent me for another tilt table test. The results came back the other day and they said that even though my blood pressure raised significantly during it (like 30 points or whatever they call it), that they didn't treat dysautonomia there, and so there was nothing more they could do for me. They said I should try ivabradine to help regulate it. So even though they didn't have a diagnosis or plan for me, they also acknowledged something is awry, which is fine. I don't care about not fitting a specific label so I was just gonna take it on the nose, try the new medication, and hope it helps. I had already accepted whatever kind of dysautonomia I have is maybe not very common as my symptoms don't match with a lot of peoples.

Well tonight I saw one of the GPs on the NHS app had logged a new diagnosis for me, which was somatoform autonomic dysfunction. I was really confused by this because the cardiologist hadn't said that in the letter, so I googled it, and from what I can tell, it is basically a term for a range of symptoms that are implied to be caused by psychological issues?

I can't lie, this has deeply upset me. I have so many other awful health issues going on right now (I've just found out with an ultrasound that I have a suspicious mass in my uterus, a blocked fallopian tube, and one of my ovaries isn't even visible anymore which has been so painful and scary), and from what I can tell, my GP has basically just put a note on my documents to tell everyone I'm just a hypochondriac and my symptoms are just anxiety?

If there is anyone else who has this condition who can tell me more about what it is I would appreciate that. I'm really hoping it does not mean what I think it means because if so I am so distraught at the idea that every doctor I see about my multitude of very real health issues is now going to be taking me even less seriously.

ETA just to clarify that I'm not downplaying or dismissing that mental health issues can impact physical health, as many studies in recent years have proven this! I just have absolutely no clue why my GP would jump to this assumption when I have not been to a doctor about mental health issues (PMDD) in literally over a decade, and certainly never at this practice. They have no reason at all to infer my symptoms are caused by anxiety, as I no longer struggle with anxiety and haven't in a long time :/

I’m gonna give a general trigger warning for this because it’s kind of gross and I’m gonna be very TMI and also mention cancer.

I developed PCOS at the start of last year very unexpectedly, as I’m in my mid twenties and didn’t even know that could happen. I went from having very normal periods to my period not showing up for three months. As I’m a virgin and knew I wasn't pregnant I was pretty concerned. I went to the doctors and they did some blood tests and a very shitty external ultrasound that showed one of my ovaries was like, four times the size of the other, and diagnosed me with PCOS.

They wanted me to go on birth control but due to my other health issues, the only type I can take is progesterone, and for some reason progesterone really fucks me up mentally the point I CANNOT take it, so I’ve not actually been having any treatment. After the three months of no period, I had a two week long period, a week off, then a seventy six day long period which was ROUGH and also when we discovered that anything like tranxemic acid for some reason just makes me bleed way harder, so again, no treatment for me.

Since then my periods been kinda normalish until a few months ago… When my 83 day period started. After about 30 days I let my parents talk me into going to the doctors for it, but they were absolutely useless and just shrugged me off. I didn’t go back again until around day 50, and that’s only because it got so bad I had to call 111 for help. TMI for this bit I’m sorry! I started losing absolutely massive blood clots, I’m talking like 3-5 inch diameter circular clots that came out whole. Every time it would happen it would scare me so bad it would actually make me scream because it was frankly terrifying. Dr Google told me to call 111 so I did, but they couldn’t really help either.

I went back to the doctor, begged him to refer me to see a gynaecologist, and he did… But the earliest appointments weren't until December, and even when I reluctantly took one, they just cancelled on me immediately and so I had to go see my doctor again about it. He FINALLY referred me to get an ultrasound, and I had it about five days ago now. My period has finally ended about 10 days ago on day 83, so I wasn’t expecting much from my ultrasound.

When I was in there they were spending ages looking on the scanner, and it was really hurting me so I was just trying to zone out, but the ultrasound technician was starting to sound really worried. At the end she told me I needed to see a proper gynaecologist urgently to get further scans and said my GP would have my results within a day.

I have them now too thanks to the NHS app, and the report said that there is a 3.5 x 3.6 cm cyst/polyp (they weren’t sure) in my uterus, which they described as multi chambered, having vascularity (which I think means like a blood flow) and being thick walled. They also noted that what they think is one of my fallopian tubes is blocked with blood in it and swollen, and they couldn’t even really identify where my ovary was on that side. They also said my endometrial lining/walls is about 1.8cm thick which they seemed REALLY worried about especially when I told them how long I’ve been bleeding for.

My GP is genuinely staffed by some of the most useless doctors ever, and so despite the ultrasound technician telling them it’s urgent, and even the doctor at the GP agreeing it’s very very urgent, they’ve referred me back to the gynae department that originally cancelled my appointment, and they’ve given me an appointment in DECEMBER. I rang my doctor AND the gynae department and neither of them seemed to know how to fix that?? So now I’m extra stressed because everyone seems to agree that this is very urgent, and yet despite spending like two hours on the phone on Friday, no one seems to want to actually get me seen?

I guess I’m just hoping to hear anyone else’s experiences with similar ultrasound results. There are quite a few people on my mothers side of the family who have had cancer and tumours or abnormal cells in their ovaries or womb lining, so my minds kind of going straight to the worst case scenario. It’s not helping that since my ultrasound I’ve been having really bad cramps and ovarian pain daily. I also don’t know what kind of tests to expect to need, but all the ones I’ve read about sound painful, so if anyone’s had a similar experience I’d appreciate hearing about what specific kind of tests you had.

TLDR; 80 day period losing massive blood clots and yet I have 1.8cm endometrial lining afterwards, a blocked fallopian tube, right ovary isn’t even visible, and a 3.5 x 3.6 cm thick walled multiloculated cyst or polyps. Has anyone had anything similar and if so what happened?

This isn’t a question, I guess I just thought this was funny and wanted to share/vent. I had my PIP assessment a few weeks ago. I’m applying for peripheral neuropathy, autism, persistent sinus tachycardia and undiagnosed collapses/seizures I have. My doctors have agreed I should not be working and I was advised by multiple people to apply for PIP as I struggle a lot so I did.

The PIP worker I got was a guy who was *super* friendly. I kind of took it with a grain of salt and was a little restrained which I felt bad about because of how nice he was being. He kept saying stuff like “wow, you have so much on your plate, I’m gonna try make this as easy as possible for you” and “don’t worry about this, you have more than enough reasons to get PIP awarded” and even at one point said that “I know how stressful this is so I always try and make it as easy as possible for people applying”.

Then today I got my letter in the post about my assessment.. And I got denied everything but four points for social mixing. I expected this would happen anyway because it really does seem like they just try deny everyone, but it really made me laugh after how overly friendly he was on the phone. I’ll appeal and hopefully it will be sorted some time in the next few months.

I can only assume he hates having to be mean to people so even though he knows he’s gonna fuck them over he just acts friendly during the call. So funny tbh. Has anyone else had this where they had a super friendly person assess them then totally rug pull them??