Autistic & Perimenopausal - My Experience! 😩 (Late Diagnosed Autistic)
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- Опубліковано 27 сер 2024
- As a very recently diagnosed Autistic, I thought it might be interesting to share my experience of perimenopause - and let me tell you, IT"S A LOT!
I'd love to hear your experiences too! 🧡
I used this list of Perimenopausal symptoms (but there are loads of others out there too) www.medicalnew...
I made a follow-up to this video on my experience of using HRT in perimenopause • Autism, Menopause & HR...
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Other videos you might be interested in:
I Was Diagnosed as Autistic at Nearly 50 (My First Video!)
• I Was Diagnosed as Aut...
10 Reasons Why I Thought I Was Autistic
• 10 Reasons Why I Thoug...
"I Think I'm Autistic, What Do I Do?" - Thoughts From a Late Diagnosed Autistic • “I Think I'm Autistic,...
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If you're interested in my clay art work, my channel is at / claydisarray
#actuallyautistic #perimenopause #autismawareness
Let me know what symptoms you experience!
I'm 49 and haven't barely been able to work the last few years because of this. It's hard to think I will ever work again
I'm so sorry to hear this. It's such a tough process to go through for so many of us. 🧡
thank you for making this video ... I'm finding the changes to my mental function, sensory sensitivities much worse, and appearance changes very distressing. I'm very late diagnosed audhd and It's like I didn't know who I was beforehand and now I'm changing again, very unsettling indeed 😳
I can totally relate. It's such a tough process 🧡
I'm 60 years old, been in full meopause for 4 years now. Also late diagnosed autistic 5 months ago. Well, I could go into ridiculous detail about all the symptoms I've experienced since perimenopause (beginning in my mid-40's) up to this point in menopause. But I'll spare you! Let's just say I've experiened almost all of the symptoms you mentioned (except brittle nails, allergies, and acne). I actually had terrible acne all my life until menopause, so in that regard menopause has been a plus for me! But everything else has been pretty horrible.
The past 5 years or so have been particularly terrible for me health-wise (mental as well as physical). I've been to so many different doctors, specialists, naturopaths, etc. I've had loads and loads of lab tests, x-rays, MRI's, and no one can find an explanation for the multitude of extreme symptoms I'm experiencing. I'm about at the end of my rope, to say the least!
Funny, no one has ever mentioned that menopause could be a reason for my decline in health. I wish I would have known a long time ago what I have learned recently about menopause. I would have advocated for myself to get on HRT. At age 60 it seems to be mostly advised that it's too late to start, as it could be dangerous.
Sorry, I tried to keep my comment short, but it didn't work out that way!
Aww, thank you for posting! It's really unfair that HRT wasn't an option for you. There needs to be much better education and awareness on menopause and how horrific it can be for many of us. 🧡
Great video Lizzie 👍 " loss of self" is definitely a big thing for me, I look at photos of me years ago and I'm definitely not the same person, I'm coming to terms with it now but it was terrible when it first happened.
I'm fat
My hair is thinning
I can't remember anything
My body hurts and my teeth are breaking a little bit but I've not got acne 😂😂😂
At least I've got one thing going for me 😂
Hope you are doing ok ❤🤓❤️
Aww, Sally. ❤️ It's awful, isn't it? It really is a hugely traumatic experience for so many women. It's great that society is more open to talking about menopause now but there's still such a LONG way to go! 😩 xxx
@@CreativeAutistic Definitely Lizzie ❤️🤓
OMG girl same! And I just learned about retinoids for acne, nobody has ever told me in my 40 years on this planet! I am so mad. I even found an OTC version, just started it today I can't wait to have clean pores at least.
I had my menopause in 2019, and have only experienced any symptoms subsequently, with the only thing of any great significance being hot flushes, a bit of acne for a while and brain fog. My libido completely vanished and that was weird. It took me a couple of years to get used to the new non-sexual me, but now I much prefer it, I feel more like the real me, without all these wretched hormonal reactions and distractions.
I now realise I must have experienced peri-menopause, but I’d never heard of it so didn’t know it was happening. I just attributed my extra-intense sexual desire and emotionality to the fact that I was in a long distance relationship at the time.
I think that so many of the other symptoms I’ve had for most of my adult life, so wouldn’t be able to say they were peri/menopause symptoms, just my usual situation, being a chronic pain sufferer, anxiety disorder, allergies and other things.
It can be *so* difficult to get used to hormonal changes. On the flip side, I'm finding I care less about what others think of me 🧡
@@CreativeAutistic Yes! That is the hidden gem!💎
Thank you so much for sharing your experience, this is so important... I'm 46 and experiencing all of these symptoms and have also been late diagnosed ADHD and autistic. I too have searched for research specifically on autistic women and perimenopause and it just doesn't seem to exist, so your lived experience is so very helpful and comforting.
Thank you, Heather. I'm glad you found it useful and I'm sorry to hear you've so many symptoms going on too 🧡
Omgoodness THANK YOU for sharing this. It was VERY enlightening..
I jane most of these and I didn't jane any idea they are related to menopause. I will say that my autism has been exasperated so much that it forced diagnosis at age 52. I've been diagnosed with ADHD for years, but my symptoms surpassed anything that could be explained by ADHD. so I know that menopause does increase symptoms. I also struggle with menopausal narcolepsy
I'm really glad it was helpful - it can be a nightmare at times for sure! 🧡
Still in it, and it's so true that the symptoms keep changing as time goes on, or recurring - it's interesting if it wasn't such a nuisance!
Yep, it seems never-ending! 🙃
Your channel feels like a gift. I've never heard someone with so many of the same symptoms. I'm going nuts with burning mouth right now. Also very restricted diet, gallbladder issues, electric shocks...thank you for sharing. I've only watched 2 videos so far and you are already a great comfort!❤
Aww, I'm sorry to hear you're suffering too - it's just horrible, isn't it! Burning mouth was one of the more obvious symptoms of MCAS for me as it's always related to food and environmental triggers - if it's the same for you, MCAS might be something for you to look into. 🧡
burning mouth and shocks here too
Thank you for making this! I have not run into anyone talking about this on UA-cam before. I just added it to my playlist of autistic creators talking about autistic topics.
Aww, thank you so much! I expect more Autistic women will be talking about this in years to come 🧡
Perimenopause has made me realise that I actually must be autistic and have just been masking my symptoms my entire life. Ive always felt very different, been treated very differently and struggled to understand why people treat me theway they have when i have always worked so hard to be "good" and honest. My problem now is that masking has been such a big part of my life that I struggle to drop the mask as well as having severe imposter syndrome that this is a real issue and not just me being *insert and common negative self talk*... Ive gone from being in a good job and social, to completely introverted and actually frightened of being around people and having to mask again... I dont know where to get help?
Hi Lizzie! I am so happy that you have started this channel, though I love Clay Disarray as well! I relate to so much of this. I am 54 and though I do not have an official diagnosis (here in the States, autistic women are very underdiagnosed) my therapist and I agree that high-masking autism is most likely. Also, I come from a family of women who are afflicted with Borderline Personality Disorder, so that's in the mix for me too. I have loads of sensory issues (smells, in particular, are brutal for me), which is so hard in menopause, as menopausal symptoms are so sensory (temperature changes, itchy skin, etc.). Two things in particular that you say here are so relatable: loss of self (I am struggling so deeply with this right now and it's painful) and the inability to socialize without alcohol. I stopped drinking many years ago and without the drink, I am just a bundle of social anxiety - so I avoid it. While I am not happy about your struggles, it helps to know that I/we are not alone in all of this. Thank you for being vulnerable enough to start this channel and share your struggles with us! 💜
👋 Aww, hello Linda! Loss of self is such a massive issue, isn't it? And there's so little discussion on it but it's one of the worst symptoms for sure. So sorry that you're having to go through all this 💩 too, but it's lovely to see you over here! 🧡
oooooh - I get pulsatile tinitis - but sometimes it's the ringing or high pitched thing and sometimes it's different in one ear than the other.
hear too - pun intended
Hi lizzie, i was with a woman going through menopause a few years ago now. Burning mouth , night sweats, fatigue, dryness, etc. She wouldn't take hrt which was her right to choose not to take it as its her life and her body. I hope your symptoms have eased and you are coping with all the complex changes both mental and physical❤. Thanks for the video on what i suspect is probably an under discussed subject.🙋♂️
Thank you! It's very under-discussed, and particularly within the autism community. 🧡
Hot flashes/night sweats is the only thing I don't have. I think my vegan diet is taking care of that for me. Which is awful, because I only knew about hot flashes so I was planning on that and now I am over here crying my eyes out to reruns that never ever made me cry before and looking at my menopause tire like where the hell did YOU come from?!?! I'm totally going on the hormones, I wanna stop crying and hurting. The bugs crawling on me feeling is annoying too, but I can deal with that one. I shaved my head because of the headaches, I was just so done with that after a week of it.
I have bugs as well
I very nearly shaved my hair too (though I was planning an undercut) but thankfully HRT (& my MCAS meds) are helping with some scalp pain issues I was having. Menopause is just *so* distressing for so many women 🧡
THANK YOU so much for this video. I'm 47 and been experiencing the change for years but more recently it's getting more intense. I'm also on the spectrum and THAT is getting worse.
You're very welcome. It's SO much to cope with. I wish more people knew about the additional challenges in peri for autistic women. 🧡
Great topic for our group to discuss. I'll disclaim first that I didn't hit menopause naturally. I had to have a full hysterectomy/oophorectomy when I was 40 so I didn't have a choice. It wasn't too long before my most obvious symptoms swept me away in a river of perspiration. I would sweat like a professional wrestler. Only I'd be just blowing my nose and suddenly sweating profusely. Especially being autistic, my sensitivity to changes in temps were (still are) over the top. Sleeping and waking up for the 9th time at night to pee, only to find my entire body sticking to clammy sheets is awful, for me and I for my guy (not a leaking bladder thankfully).
Also, I've gone from looking and physically feeling like a 40 year old to feeling like I've found the Fountain of Geriatry in a span of only 12 yrs. Weight gain, forgetfulness, IBS turned Daily Nuclear Event, depression and a resurgence of panic attacks from my younger years. I would wish those on my worst enemy.
I never did HRT for long because it nauseated me somewhat. I probably should have.
I'm still temp sensitive today as well as the other autistic tendencies exacerbated by menopause. I'm in burnout now, off work, so there may be alot of subjectivity to what I've said. I just thought maybe there's a nugget in there someone may benefit from. I wish you all the best of health during your time if this affects you! 🙏
It's really helpful to hear others' perspectives on this as it's a massive issue for autistic women. Thank you, Heidi 🧡
Can relate to the noise and alcohol dependency for socializing. Lots of other symptoms. Recently diagnosed and 43 exploring HRT for a myriad of symptoms.
Congrats on your diagnosis and good luck with your HRT journey. I'm so thankful it exists! 🧡
I just found you and am beginning the process of exploring an AuDHD diagnosis. Im 48 and going thru so many if the symptoms you highlighted 🫠
Thank you for sharing since this since it gives me even more to go off of.
I'm glad you found it helpful 🧡
I became officially in menopause last September, right after I turned 50 in late August. I had been dealing with the symptoms since I was 42. I don’t feel like my symptoms were severely bothersome, but I do think that some aspects were exacerbated by being unknowingly autistic (I received my diagnosis in early November), but there were also other factors in my life that contributed especially to anxiety and depression. Now that I am officially out of perimenopause, and I have made some changes in my life to remove the other issues, I find that only a few of the symptoms remain and hot flashes have pretty much stopped (for the moment anyway). I think hot flashes were one of the most bothersome things for me and I took some steps to alleviate them: 1) I got an Embr Wave 2 to cool myself when I'm too hot and to warm myself when I'm too cold; 2) I swapped much of my bedding out for cooling options; 3) I got a nape undercut at the back of my head to make it much cooler, especially when I put my hair up. I have so much hair, that no one can tell when it’s down that I have that undercut!
Some great tips here! It's interesting how we all experience peri/menopause *so* differently 🧡
i'm in my 7th year of menopause, it hasn't got much better, just dealing with it better now... finding out I'm autistic has on some level helped, but it is a lot to take in.. finding your whole life has been a mask, exploring who i am truly and dealing with this very difficult 'change' it's like having a disease that no one can help you with. My dr doesn't think HRTs are good but i have heard positive things, so do your research and self advocate!! (I'm looking for a new dr)
HRT has been a lifesaver for me. It's not perfect but it's helped to relieve a lot of symptoms. I've no idea why some Doctors are so reluctant to prescribe it. 🧡
I'm 47. I got night sweets when I was 45 for a few months and it turned out I had a systemic infection. They went away when I treated that. I started getting them again this year and it turns out it was Lyme disease. I blamed the Lyme disease night sweets on peri-menopause so it went untreated for six weeks. When I treated the Lyme, the sweets went away. So if you have night sweets, see if you have an infection.
Ah, that's interesting. Thank you for sharing.
Woah poor you, so many symptoms! I hate to think what it would be like without the HRT!
I'm just thankful we live in a time where HRT is available tbh. I think I'd be bedbound otherwise!
I just turned 40 and im stil nursing my 3yr and 3 month old child. I have PMDD and im scared of moving towards menopause. The last 2 or 3 cycles i have had some new weird symptoms about a week before my period. I was having blurry vision and it was scary because my preschooler was doing her things and we were out in public and i could not see well much less control the situation and ensure that she was safe, luckily we were w people we knew but i had to pretty much yell at my kid to make her sit still while i was having the episode. This month was more dizziness rather than blurriness. When i woke up at night to roll over i would feel like i was on a rocking boat and my brain was sloshing inside my head....what next?
I'm sorry to hear this - I get vision blurriness too and it can be really frightening 🧡
My favorite part is that my upper legs don't grow hair anymore. Less shaving!
I'm noticing way less hair too - one of the few bonuses for sure! 🧡
Sometimes it is hard to tell what is caused by menopause and what is caused by POTS.
Yes, there’s definitely some crossover of symptoms, and similarly with MCAS 🧡
@@CreativeAutistic Yes! 💜
@@CreativeAutistic Yes! 💜
Wow! I didn't know that menopause could cause all of those things!
All this and more - its been a very steep learning curve! 😳
Post menopause. I couldn't seem to do what was expected of me at any job. I'm unemployed now and mooching off my kids. assessment in T-25 days.......
I hope your assessment goes well 🧡
@@CreativeAutistic I have a LOT of homework!
yes dry eyes - I'm using restasis
I suffer from Anerexia so I know I'm going to hate the weight gain and really start to control calorie consumption ,I have autism i.was diagnosed at 34 I'm 40 now.
I'm sorry to hear that, Heather. Many women don't experience weight gain so it might not be a symptom for you. 🧡
I am honestly terrified. I have PCOS, which in my case means taking birth control in order to have a cycle. Starting that was also when I developed major depression with a side order Bad Thoughts. I have been fighting this for decades. And now the moodiness is only going to get worse? When do I get to go back to normal?
This is all exacerbated by the fact that I'm agender (nonbinary) and being considered a woman makes me oddly uncomfortable. The idea of taking estrogen is the exact opposite of what I want for myself. Who designed this system, anyway? And how do I unsubscribe?
I'm sorry to hear this - it must all be incredibly difficult for you. I've always been comfortable with my assigned gender but my brain *completely* dissociated from many parts of 'womanhood' including children and childbirth, so it felt very much like I didn't subscribe to anything related to peri/menopause and I was shocked when it arrived. I had real issues even using the word 'menopause' in the early years - I'm fine with it now, but I had to use terms like 'middle-aged hormonal changes' for a good while.
Omg yes i was pissing my pants multiple times recently....kept forgetting to look it up😮
🧡
Night sweats, by way of hindsight, can also be a symptom of your having cancer in your body.
Yes, it was for my mom. If one is able to do so, it's good to get checked to be on the safe side.