Beautifully captures what I imagine has been examples of female suffering that was, for much too long, likely suppressed, dismissed, gaslighted or even self-shamed into something undeserved. So good to see this effort towards helping awareness get out to the world.
Ah this Perimenopautism is a real wild ride isn’t it! I’m really struggling with my own demand avoidance at the moment. I think it’s due to a delayed ‘restraint collapse’ after leaving the corporate world, heightened by my children (7yo highly sensitive, likely AuDHD & PDA and 2yo VERY full-on and defiant toddler) and definitely triggered by seasonal ‘to-do lists’ but finding it really detrimental to my own well-being and relationships… I find myself being a very unempathetic and shouty mum and wanting to jump out of my skin with their reasonable and not so reasonable requests. And I can see that I’m beginning to actually get in my own way and not wanting to meet my own needs (sleep, etc)…
If anyone has found something that helps I’d love to hear it! I’ve made an appointment with my GP for early Jan to talk about my general overwhelm and irritability, hopefully starting some kind of pathway to diagnosis and perhaps medication. I’m self-diagnosed AuDHD and likely perimenopausal too. 🙏
Hi Christina, that was my exact path too and it’s awful. You have all my sympathy and empathy (because I can rarely remember the difference between the two!)
It’s great that you already know what is likely going on with you all. Can you afford to get yourselves formally diagnosed? Otherwise is the public waitlist where you are reasonable?
I’d recommend getting the ADHD managed with medication, it is a huge help for me in my own emotional regulation and being able to prioritise where to direct my energy and attention.
Dealing with sleep is a huge one. Are you getting any/enough? When we were first under CAMHS, they triaged our family needs and sleep was top priority. Before any formal ND assessments, the kids were prescribed melatonin and it made the world of difference.
For you, HRT/MHT can be a huge sleep aid. Are the little ones waking at night and disturbing your sleep? I still co-sleep with my almost ten year old. I’m on melatonin, sleep meds, HRT etc. but still wakeful at night. Although currently am waking in pain after a car accident. Can’t do a lot about that. But my cats wake me up too and I should do something about that 🙈
I honestly do understand how hard things are for you, and would really encourage you to get as much support as it’s possible to get, in line with your parenting style, family dynamics etc.
The sooner the better because our fluctuating hormones can cause us to rapidly spiral which can be very scary. Also it’s harder to get up from that deeper, darker place.
Please feel free to DM me if you’d rather discuss it all there.
I know you are already doing an amazing job! They will survive a bit of shouting while you get supports and treatment plans in place, honest. It’s the kind of complicated situation where one thing doesn’t resolve it, it’s a holistic approach that can take a while for things to settle and start feeling better/manageable.
Hang in there, you are not alone xx
PS: if the GP tries fobbing you off with only an SSRI (which can be great alongside HRT), please get a second opinion.
PPS: I am way ahead of you on this road and have just started mood stabilisers and they are great! I never used to take medication but needs must. We have to prioritise our mental health, and sometimes we need a lot more medication than we may once have felt okay with. Just keep an open mind and find a doctor you really trust who understands neurodivergence, understands perimenopause, understands you, understands that you know yourself best, and believes that you are an equal partner to them in your own right.
So many relatable lines in here. "Why is my vagina burning?" And "We ride at dawn" are my favourites. Also, much empathy your way. This life transition is wonderful.
Hmm I am perimenopAuDHDysphoric - perimenopausal, autistic, ADHD and have premenstrual dysphoria. Such interlaced condition and symptoms i drew a flow chart!
Diagnosed perimenopausal at the start of the year, after massive brain fog issues and losing speech fluency. I would have had to stop working from these alone, but I was also in massive autistic burnout and, during a premenstrual dysphoria episode, I rage-quit 6 months ago. ADHD meds (diagnosed after quitting) and HRT have helped a huge amount but i have little energy. Recently I had my autism suspicion diagnosed. I am nowhere near able to work again, maybe one day a week as a trial, if I can find that.
That all sounds super intense. That goodness you had a doctor who was willing to try different options for you.
It’s all a total minefield, isn’t it?! I just want a total hysterectomy and bilateral oopherectomy with add-back hormones. I’m so done with it all 😭
Please let me know if you find the panacea! I’m still on Zoladex so no bleeding thankfully but can’t tolerate progesterone so my endometrium is at risk from the high dose of add-back oestrogen HRT I need to simply survive.
Lovely to hear from you. No worries about delays, my communication is totally asynchronous so 🤷🏻♀️ 😹
Hi Stella, yes I have all those letters after my name too! Plus I’m PDA autistic, which you may also want to look into if you’re pursuing an autism assessment. I wouldn’t recommend PDA but what can we do? 🤷🏻♀️ 😹 😿
I’m sorry you’re having such an awful time of it. I’m at home with my AuDHD kids but I absolutely would not function in employment outside the home currently, so can totally empathise.
What, if anything, is helping with your PMDD? I’m on Zoladex, and have written about it before (chemical menopause; GnRH analogue posts in my archives). It certainly isn’t a smooth ride. My bloating is astounding but I think I’m progesterone intolerant. I was going to write this week about how I want my uterus, cervix and ovaries removed but realised I’m too volatile and don’t want to publish something openly that I’ll regret. Very hard to hold back though when PDA with ADHD and RSD. An alphabet soup of diagnoses with more coming up frequently!
I’ve lost speech capacity and cognitive function too. It’s awful, isn’t it?!
Thank you for this. Sorry, I am still getting used to Substack, hence the delay.
I tried Zoladex with HRT (for 13 months! There were reasons). My PMDD carried on without skipping a beat. Unfortunately, my specialist thought this was impossible and I must have another condition (as well as PMDD) that was being revealed now the PMDD was controlled by the Zoladex. With *exactly* the same symptoms, intensity, and cycle?! Whatever.
Thankfully the next thing I tried was Venlafaxine/Effexor, which removed 95-100% of my symptoms each luteal phase for maybe a year and a half. But then with perimenopause progressing (unrealised at the time) the symptoms got worse and worse again so it feels like the Venlafaxine isn't doing anything (I can't imagine how bad it could be without it!).
Now I am on HRT which has helped a lot, but I am getting crushing fatigue for the first week of luteal, then a day or so of normal energy, then PMDD! I can't make sense of it.
Thanks, Tamsin! I’m so grateful you are on the other side and showing us all that this is survivable and worth surviving. I find your work so inspiring and really want to ease into crochet and knitting in my years to come. What a fantastic creative stim 🥰 🧶 🐸 🍫
Now I’m thinking about Harry Potter chocolate frogs… 😋 🧙
Oof. ALL OF THIS. I’m a non-binary autistic (self declared weirdo) with a uterus, two wondrous children who are also autistic, an egalitarian partner who is a gender, a supportive best friend who is also in perimenopause. Two wondrous jobs.
And last night I was still angry eating chocolate cake wishing I could just disappear in a flash of sparkles and magically everyone would learn to cook for themselves and help walk our dog.
I can’t sleep, am exhausted and still my whimsical side is like…we’ve got things to do.
I remember when my mother turned 50 and we were all out for dinner with her for her birthday. And she all of a sudden wasn’t…nice? Like she’d always been herself at home…but all of a sudden she was sending her steak back over and over and saying, “I just want it done right! Is that too much to ask?!”
Thank you for giving women and folks with uteruses a place to read about the things happening within us. I also like the if you’ve met one of us…give us chocolate and back away slowly 😂 I needed a laugh this morning.
I appreciate you immensely, even if I don’t always have the energy to say.
Thanks for your lovely message! I’m totally with your Mum, she must have been sick to death of cooking for others then the chance she gets for someone to cook her a decent meal and they repeatedly mess it up. I love how she sent it back every time! 💪
How often do we pretend everything is fine and just accept second best, just as long as everyone else is happy?
Beautifully captures what I imagine has been examples of female suffering that was, for much too long, likely suppressed, dismissed, gaslighted or even self-shamed into something undeserved. So good to see this effort towards helping awareness get out to the world.
Thanks, Krystalynn. Yes, we have all put up with giving too much whilst receiving so little back for roo long! Time to turn that around!
Ah this Perimenopautism is a real wild ride isn’t it! I’m really struggling with my own demand avoidance at the moment. I think it’s due to a delayed ‘restraint collapse’ after leaving the corporate world, heightened by my children (7yo highly sensitive, likely AuDHD & PDA and 2yo VERY full-on and defiant toddler) and definitely triggered by seasonal ‘to-do lists’ but finding it really detrimental to my own well-being and relationships… I find myself being a very unempathetic and shouty mum and wanting to jump out of my skin with their reasonable and not so reasonable requests. And I can see that I’m beginning to actually get in my own way and not wanting to meet my own needs (sleep, etc)…
If anyone has found something that helps I’d love to hear it! I’ve made an appointment with my GP for early Jan to talk about my general overwhelm and irritability, hopefully starting some kind of pathway to diagnosis and perhaps medication. I’m self-diagnosed AuDHD and likely perimenopausal too. 🙏
Hi Christina, that was my exact path too and it’s awful. You have all my sympathy and empathy (because I can rarely remember the difference between the two!)
It’s great that you already know what is likely going on with you all. Can you afford to get yourselves formally diagnosed? Otherwise is the public waitlist where you are reasonable?
I’d recommend getting the ADHD managed with medication, it is a huge help for me in my own emotional regulation and being able to prioritise where to direct my energy and attention.
Dealing with sleep is a huge one. Are you getting any/enough? When we were first under CAMHS, they triaged our family needs and sleep was top priority. Before any formal ND assessments, the kids were prescribed melatonin and it made the world of difference.
For you, HRT/MHT can be a huge sleep aid. Are the little ones waking at night and disturbing your sleep? I still co-sleep with my almost ten year old. I’m on melatonin, sleep meds, HRT etc. but still wakeful at night. Although currently am waking in pain after a car accident. Can’t do a lot about that. But my cats wake me up too and I should do something about that 🙈
I honestly do understand how hard things are for you, and would really encourage you to get as much support as it’s possible to get, in line with your parenting style, family dynamics etc.
The sooner the better because our fluctuating hormones can cause us to rapidly spiral which can be very scary. Also it’s harder to get up from that deeper, darker place.
Please feel free to DM me if you’d rather discuss it all there.
I know you are already doing an amazing job! They will survive a bit of shouting while you get supports and treatment plans in place, honest. It’s the kind of complicated situation where one thing doesn’t resolve it, it’s a holistic approach that can take a while for things to settle and start feeling better/manageable.
Hang in there, you are not alone xx
PS: if the GP tries fobbing you off with only an SSRI (which can be great alongside HRT), please get a second opinion.
PPS: I am way ahead of you on this road and have just started mood stabilisers and they are great! I never used to take medication but needs must. We have to prioritise our mental health, and sometimes we need a lot more medication than we may once have felt okay with. Just keep an open mind and find a doctor you really trust who understands neurodivergence, understands perimenopause, understands you, understands that you know yourself best, and believes that you are an equal partner to them in your own right.
Autistic perimenopause is just crushing me right now (well for the last two years) 😭
I’m right here with you having a horrendous time of it 😭
Where in the world are you? I’m in Aotearoa NZ with summer fast approaching. Even that is enraging me 🔥 🥵
I'm in Boston MA so heading into winter, dark short and cold days are tough emotionally and energetically
Yes, those wintry days can certainly lend themselves to rumination and despair when fuelled by perimenopautism 😭
Wishing you much cosiness, regulation and a good support network to see you through.
I wish I could hibernate and re-emerge post-menopausal 🦔
Thank you so much. I appreciate the opportunity to connect :)
So many relatable lines in here. "Why is my vagina burning?" And "We ride at dawn" are my favourites. Also, much empathy your way. This life transition is wonderful.
And it suuuuuuuuucks. x
Thanks, it’s the worst! And I’ve already been through tons of shitty life transitions as a pre-diagnosed neurodivergent woman x 😭
💕💕💕
Hmm I am perimenopAuDHDysphoric - perimenopausal, autistic, ADHD and have premenstrual dysphoria. Such interlaced condition and symptoms i drew a flow chart!
Diagnosed perimenopausal at the start of the year, after massive brain fog issues and losing speech fluency. I would have had to stop working from these alone, but I was also in massive autistic burnout and, during a premenstrual dysphoria episode, I rage-quit 6 months ago. ADHD meds (diagnosed after quitting) and HRT have helped a huge amount but i have little energy. Recently I had my autism suspicion diagnosed. I am nowhere near able to work again, maybe one day a week as a trial, if I can find that.
Hi Stella,
That all sounds super intense. That goodness you had a doctor who was willing to try different options for you.
It’s all a total minefield, isn’t it?! I just want a total hysterectomy and bilateral oopherectomy with add-back hormones. I’m so done with it all 😭
Please let me know if you find the panacea! I’m still on Zoladex so no bleeding thankfully but can’t tolerate progesterone so my endometrium is at risk from the high dose of add-back oestrogen HRT I need to simply survive.
Lovely to hear from you. No worries about delays, my communication is totally asynchronous so 🤷🏻♀️ 😹
Hi Stella, yes I have all those letters after my name too! Plus I’m PDA autistic, which you may also want to look into if you’re pursuing an autism assessment. I wouldn’t recommend PDA but what can we do? 🤷🏻♀️ 😹 😿
I’m sorry you’re having such an awful time of it. I’m at home with my AuDHD kids but I absolutely would not function in employment outside the home currently, so can totally empathise.
What, if anything, is helping with your PMDD? I’m on Zoladex, and have written about it before (chemical menopause; GnRH analogue posts in my archives). It certainly isn’t a smooth ride. My bloating is astounding but I think I’m progesterone intolerant. I was going to write this week about how I want my uterus, cervix and ovaries removed but realised I’m too volatile and don’t want to publish something openly that I’ll regret. Very hard to hold back though when PDA with ADHD and RSD. An alphabet soup of diagnoses with more coming up frequently!
I’ve lost speech capacity and cognitive function too. It’s awful, isn’t it?!
Thinking of you 💕
Thank you for this. Sorry, I am still getting used to Substack, hence the delay.
I tried Zoladex with HRT (for 13 months! There were reasons). My PMDD carried on without skipping a beat. Unfortunately, my specialist thought this was impossible and I must have another condition (as well as PMDD) that was being revealed now the PMDD was controlled by the Zoladex. With *exactly* the same symptoms, intensity, and cycle?! Whatever.
Thankfully the next thing I tried was Venlafaxine/Effexor, which removed 95-100% of my symptoms each luteal phase for maybe a year and a half. But then with perimenopause progressing (unrealised at the time) the symptoms got worse and worse again so it feels like the Venlafaxine isn't doing anything (I can't imagine how bad it could be without it!).
Now I am on HRT which has helped a lot, but I am getting crushing fatigue for the first week of luteal, then a day or so of normal energy, then PMDD! I can't make sense of it.
I haven't heard of PDA autism. Will look it up.
Totally relate to this!
Thanks, Trudi!
This was fab Sam. From one the other side and now just menopaustic I wish I’d been flung chocolate and left alone before.
Thanks, Tamsin! I’m so grateful you are on the other side and showing us all that this is survivable and worth surviving. I find your work so inspiring and really want to ease into crochet and knitting in my years to come. What a fantastic creative stim 🥰 🧶 🐸 🍫
Now I’m thinking about Harry Potter chocolate frogs… 😋 🧙
Kind words indeed. ☺️
Oof. ALL OF THIS. I’m a non-binary autistic (self declared weirdo) with a uterus, two wondrous children who are also autistic, an egalitarian partner who is a gender, a supportive best friend who is also in perimenopause. Two wondrous jobs.
And last night I was still angry eating chocolate cake wishing I could just disappear in a flash of sparkles and magically everyone would learn to cook for themselves and help walk our dog.
I can’t sleep, am exhausted and still my whimsical side is like…we’ve got things to do.
I remember when my mother turned 50 and we were all out for dinner with her for her birthday. And she all of a sudden wasn’t…nice? Like she’d always been herself at home…but all of a sudden she was sending her steak back over and over and saying, “I just want it done right! Is that too much to ask?!”
Thank you for giving women and folks with uteruses a place to read about the things happening within us. I also like the if you’ve met one of us…give us chocolate and back away slowly 😂 I needed a laugh this morning.
I appreciate you immensely, even if I don’t always have the energy to say.
Thank you. 💖
Thanks for your lovely message! I’m totally with your Mum, she must have been sick to death of cooking for others then the chance she gets for someone to cook her a decent meal and they repeatedly mess it up. I love how she sent it back every time! 💪
How often do we pretend everything is fine and just accept second best, just as long as everyone else is happy?
Thanks for your generous and kind words 🥰
Total nightmare! You have all my sympathies 💐