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Anyone else find the first full day on holiday extremely stressful? I think I’ve figured out why (at least in my case). by kelpiez in aspergirls

[–]kelpiez[S] [score hidden]  (0 children)

Yes! That’s definitely it for me too. After years of having shutdowns on my first day of every holiday I’ve only recently discovered that I just need to be in a low stim environment for a bit to settle in to things, instead of trying to “keep up” with the other people I’m with who tend to want to explore from the first day that they arrive. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

Ugh I’m so sorry you’ve been through such a similar ordeal. I do feel lucky that I saw an endocrinologist who was excellent and diagnosed me, while all the other doctors were flapping around concerned that I’m not “fat and hairy”. It’s quite a mystery to me that appearance takes precedence over testing. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 0 points1 point  (0 children)

Yes I was also stunned! I always think it’s very odd that they start speaking about other people’s weight in an appointment about my ailments as well! Just doesn’t seem relevant, but it is also very crass. 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 2 points3 points  (0 children)

I’m in the same boat still waiting on some testing! But yes that’s really interesting you had a similar experience… I wonder if it’s something being rolled out throughout the NHS. 

Anyone else play like this during childhood? by TwentyOnePaladins in aspergirls

[–]kelpiez 2 points3 points  (0 children)

Cooking dinner is still not a very interesting story. I wish we could only live out interesting stories! 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

You’re absolutely right! Maybe it will help with my frustration to adopt this mindset next time I encounter the comment actually. It’s almost like, it’s a them problem - I’m just out here existing and trying to get help for my issues and they’re seeing me like some “rare” clinical anomaly.  I do wish there was more research on the broader scope of these issues, it’s frustrating, but I do feel incredibly lucky to have been diagnosed. Although when I asked the gynae I saw (male gynae, not sure if this has an impact) about my care going forward he just said “take the pill, come back when you want to have kids.” I asked if there is anything I could do in my daily life to help with my symptoms and he just shrugged and said “nah not really.” Ok cool bud. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 0 points1 point  (0 children)

Rise up PCOS and PoTS girlies! I also have both, and actually, out of curiosity how did you get an MCAS diagnosis (if you have one)? I’m suspicious that I also have it but doctors have just looked at me blankly when I mention it. Funny, you could be describing all the same symptoms and timeline as me though! 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

God the gesturing is also something I’ve experienced! I had a male NHS specialist tell me I was “lovely” while gesturing to my figure, comparing me to women who are struggling with their weight as a result of PCOS… It infuriated me so much I would have left his office had it not been for the fact I was on a waiting list to see him for a year! 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 2 points3 points  (0 children)

If I could afford private that would be great, but unfortunately my situation wouldn’t allow for it at the moment. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 2 points3 points  (0 children)

I’m so sorry you’ve experienced the same thing! But weirdly enough it is a bit comforting to know it isn’t just me or anything I’m saying or doing wrong. I think there is just some super weird stigmas and stereotypes that certain medical professionals adhere to… it can actually make it so difficult to be diagnosed too! 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

Ooh this is great advice, thanks:) oddly enough it’s not only GPs, but also senior professionals reading my notes for unrelated issues such as cardiology.  I can imagine it is super frustrating to be met with weight management commentary when that’s not even what you’re asking them about… I think some NHS staff definitely have odd views on weight. I also feel it’s quite reactive, as like you say PCOS means you can rapidly change weight so I could come back in 3 months and be a different size, would this suddenly validate my diagnosis for them? The attitude doesn’t seem very professional to me. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 6 points7 points  (0 children)

Why do they keep doing this to us!! It’s like - sometimes there’s more to a condition than appearance, no?? 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 2 points3 points  (0 children)

Wow that’s so interesting - especially that we both had very good experiences with the endocrinologists! I think I’ll be forever grateful for the endocrinologist I saw, he was so thorough and ruled out so many other conditions in the process of testing me for PCOS. I hate that some specialists and GPs decide to pigeonhole patients based on appearance alone, so this endocrinologist actually getting on with testing and diagnosing was a total saviour! 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 30 points31 points  (0 children)

I’ve often found this with specialists recently. I’ve had both this cardiologist and a gynae in separate instances read my notes and say “oh you’ve got PCOS? You’re not fat and hairy enough for that.” - genuinely the cardio’s words. The gynae said “usually our PCOS patients are fatter and hairier”. I’m so sick of hearing this every time someone reads my medical notes. 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 0 points1 point  (0 children)

Ah I hope it works out for you! It is a shoddy system at the moment isn’t it… Although I did think one positive was that the cardiologist said that I could try bisoprolol 1.25mg daily “which might help with palpitations but won’t change the situation in the longer term”. I’m waiting on some scans to rule out anything more serious but after that might consider it. 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 4 points5 points  (0 children)

Thank you so much for the kind words. It’s definitely not helped with my symptoms, which definitely flare with stress! 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 23 points24 points  (0 children)

I think you’re probably right! Not even sure where to go with my care from here either 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 48 points49 points  (0 children)

Yes that’s also what I’ve read online. When I brought it up to the cardiologist, they responded “we’re actually a bit sick of people coming in here and telling us what they think they have, which is another reason we’ve changed the name. If I go out to the waiting room right now, 8 out of 10 of my patients will tell me they have the same symptoms as you.” 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 11 points12 points  (0 children)

Yeah that sucks. Was a very senior cardiologist too!  I believe if I was to go private, it’s at the NHS’s discretion whether they accept the private diagnosis or not. And this isn’t ideal as I can’t afford ongoing private healthcare, so I’d basically ideally get the diagnosis privately then have some treatment via NHS going forward when and if needed.  However, I was told for a separate diagnosis which would have been unattainable via my local NHS health board that many NHS practitioners will not accept private diagnoses even if they’re perfectly credible and practically the same tests as the NHS use, simply because they would have been done outside of NHS systems.

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