Thank you for your comprehensive list of symptoms - most of which I have!! Even things that I didn't think were related, seem to be. The brain fog which looks like cognitive decline is the scariest one though.... :(
Trying to explain how adrift I feel to my GP is an exercise in futility. She is a late 30-something who hasn't got a clue!
Of course, I have been masking for DECADES and it is only now, that I finally have my official diagnosis in my hot little hand that I feel a little bit more free to be myself - only to discover that people around me are not very comfortable with it. At all.
The most understanding is actually my 25 year old second cousin who is married to a woman, ASD and ADHD and just GETS me in a way that no-one else does (even my son, who was also diagnosed with ASD and ADHD). I barely have to say two words to her and she jumps in and lets me know very rapidly that she understands how I am feeling, despite our large age gap. It is SO nice spending time with her (and her wife, who is a little more reserved and not on the spectrum, as far as I know). I wish I had my cousin's confidence, to be honest with you, she dresses as she likes (with a LOT of colour!) and doesn't give a sh*t what people think of her. She is the most authentically herself person I know. And I love that about her :)
btw, I looked up the Canadian OT thingamy that you mentioned in another post, only to have trouble finding an OT locally I can afford. They are very hard to get in to, to the point where I thought about maybe getting some extra training to BECOME one, but there are too many hoops to jump through, I am too old to start something like that and it is very expensive :(
Still, it got me thinking about further study :) So there is that!
Thank you so much for your articles, they make a big difference in my life.
Hi Monica! It is lovely to hear from you, thanks for your kind words!
I am so sorry you are experiencing so many of these awful symptoms too, it's just awful.
Definitely scary as the cognitive decline progresses and our capacity diminishes. I also make small gains and then it is devastating when I spiral again.
I am sure you are doing a great job of educating your GP, but you really shouldn't have to be. Who has the energy for that?!
Congratulations on your recent diagnoses! 🏆
It is great that your cousin gets you! I find it wonderful how our neurokin bonds transfer across generations and cultures. It is just so calming to be arounbd people who we don't have to overexplain ourselves to.
Oooh the Canadian Occupational Performance Measure! I wonder if there are any YouTube videos of it? Maybe not as it is a therapeutic assessment tool and I expect heavily copyrighted. You would make an awesome OT, but that would be a massive commitment to retrain!
NZ has been very calm this weekend after the horrendous storm we had midweek. It was so scary! I hope things are settled in Aussie for you this evening :) xx
Thanks so much for sharing your experience. This is so helpful to understand.
I have many questions about menopause, but I will limit myself to two!
1. Does anyone know if trans men with hormone levels within a typical cis male range experience menopause? I also wonder if this varies with a hysterectomy or not. Just curious, as this is not my personal experience.
2. I am also curious about the overlap between MCAS (mast cell activation syndrome) symptoms and perimenopause symptoms. For example, the bladder pain/feeling like a constant UTI, face flushing, and digestive distress. I have or have had these symptoms. I've heard some folks describe an allergic reaction to hormones. Is it possible it's the mast cells overreacting that could cause some of these perimenopause symptoms?
As far as I am aware, being post-menopause is a concept that denotes a year to the day from your last bleed if it's a "natural menopause", i.e. not a medical meno.
I am cis female and in a chemical (temporary and reversible) menopause with add-back hormones via HRT, hoping for a hysterectomy to put me into an immediate post-menopause state. That is a surgical menopause.
I am not sure what the hormone levels are post-meno for cis or trans people, but as soon as the ovaries are removed and no more menstrual bleeding, the person is considered post-menopausal.
Some people will have a hysterectomy removing the uterus/womb, but retain the ovaries. As far as I am aware, the person can then no longer menstruate, but the ovaries are left in to retain their hormonal function. I wonder if that makes them post-menopausal..? 🤔
2. I don't know anything about the intersection of MCAS and peri but I can't imagine it's good! It sounds likely that some people who are extremely hypersensitive may be allergic to hormone therapy. I wonder if that is more likely when using synthetic hormones, or taking them orally rather than transdermally. But sorry I don't know the answer.
Yes exactly that and I think a side effect to the Progesterone which I started taking as a pessary. So yes now I think I can't take progesterone - orally it made me feel like a zombie, vaginally I got hives! So hard to balance. I really hope you get the hysterectomy soon and that it helps. I take herbs too and they do support me a little bit. Have you tried a herbalist at all?
Not spoken to anyone about the hallucinations as I was too freaked out! But they went with HRT so I am assuming they were related. My friend has experienced them too xx
Yes the Progesterone thing is so hard as it seems like it is such an important part of the puzzle but causes loads of side effects for me. With the herbalist I will take various tinctures as I titrate down tye HRT and different symptoms come up. I have been on and off herbs for years. They 100% help with reducing my histamine issues and provide other support. Whether they're strong enough to cover the whole gamut of my symptoms time will tell! We start the detox in two weeks. Hormone support and support for my liver to detox all the hormones, reduce pelvic congestion. Peony, Dandelion, St Johns Wort, Chatavari, Wild Yam all mentioned... 🌱
Wow. So many of these have been with me all my life because I was born with Chiari Malformation in addition to auDHD. You taught me that I have only been in peri since 2022. FML that’s when my cycle became erratic. I just want it to end. Though, wanted THAT since the first one! #nonbinaryproblems
Oh gosh! Yes, all this! Thank you so much. I'm a recent follower here but this has meant still much this morning. I am really feeling it all at the moment- I also have long covid/ME, come to the realisation over the last couple of years I am probably autistic (therapist agreed) and I'm in the midst of dealing with my late Father's messy estate, 18 months after he suddenly died. I regularly just don't know what is happening, what 'condition' to blame, what to do about it and hugely guilty about how much I'm having to lean on my partner. I do have a sympathetic GP, who first suggested perimenopause to me and I've started hrt but I've now realised one of my masking things is that I don't really express fully how crap I'm feeling. The only person who sees my shutdowns is my partner (my Dad was the only other person I collapsed on). I did have a very good conversation with a (non Nd) friend this week who also gets the overwhelm so I feel reassured in a way, but ultimately, when is it going to end?! But, pheouff, sorry for off loading all that but I felt so validated reading all that. Thank you.
Hi Rachel, you are so welcome here. I am sorry it is all so full on for you currently. I am in Aotearoa NZ and need to get the kids and myself to bed now (it is 9pm ish) but I didn't want to read and run. Looking forward to reading through your comment again soon and being able to support you. In the meantime, the archive is full of posts that might be useful, or validating, at the very least. I will share two articles below that I think might fit with where you are currently at. Chat soon xx
I have had most of these symptoms. I now pre-cursor most of my work meetings with '.I am peri-menopausal amd will most likely forget what you ask me, so please wrote it down and remind me often'. Before starting HRT one of the scariest symptoms was I actually started hallucinating. I frequently jumped because I could see people that weren't there out of the corner of my eye and once saw a dead person by the side of the road! Now on HRT with the sun shining brightly ai have discovered I have developed Solar Uticaria and possibly heat Uticaria... Five minutes in the sun and any exposed skin is bright red, crazy itchy, hot and sore. I am going to try coming off HRT because of it working with a herbalist but I am quite terrified about the potential return and worsening of symptoms. As one of my good friends said, at least in pregnancy you know you only have 9 months but peri and menopause you have no idea how long it will last - I hugely struggle with this. How are we all still smiling and standing? I have no idea! Sending you and your hip love. For me the hormone surges around ovulation seem to turn it pelvis to liquid, something to do with hypermobility it's bloody exhausting isn't it! Amd yes our bodies tell us so much more than the doctors can xx
Hi Chloë, I haven't heard of urticaria before - are you getting hives from UV and heat exposure? That is awful! I don't suppose it might be a sensitivity to/side effect from a particular HRT brand you're using, rather than the hormones themselves?
Why is it all such a hideous minefield? Yes, I was thinking about pregnancy pelvic pain and how finite it was. But then the postpartum 💩 would kick in. It is all so unfair.
People say how much better they feel after a hysterectomy. I am desperate for one and to be able to finally make perimenopause end. The not knowing how long is so so cruel.
Your hallucinations sound so scary. Have you seen anyone about those? I haven't heard of them before! Now that you come to mention it, I think I used to have those in puberty, but intrusive thoughts were a constant.
Poor you still ovulating and having to go through it all so regularly. Wah! xx
Wow Sam, this is an EPIC post. What an amazing act of service to pull this all together.
It feels like perimenopause is just like some evil batman villain coming along to fuck around with us midlife women in the most vile ways they can think up. I recognise a ton of those symptoms.
I'm really lucky to have found (on a friend's recommendation) the woman GP at my doctors surgery who is actually really supportive and understanding (and on HRT herself), compared to the previous, also female but much older, GP I saw who dismissed my hormonal acne, which was one of the first main changes I got, back in 2021, as being caused by my pandemic face mask. The gaslighting is real...
My most debilitating symptom is a hundred percent my migraines. But I've also seen weird upticks in allergic symptoms when no obvious triggers were present. And I have this persistent itch round my left jawline up by my ear that drives me CRAZY. And I wonder if that is a symptom too (you mentioning the tingly scalp reminded me of it).
Medical dismissal is real and rife sadly. I’m so glad you got an appropriate response after a second opinion!
Your migraines must be horrendous. Have you noticed a pattern to them alongside your menstrual cycle? Are they new for you in peri?
I’ve had the acne and rosacea too, although it’s better managed now presumably with well titrated HRT?
Hair loss is ongoing though, and I find it really upsetting.
The itch around your jawline sounds frustrating! I just had a quick Google and my own doctor’s website popped up! She says it’s called pruritis and is due to:
Adulting SUCKS!!! However, YOU don't :)
Thank you for your comprehensive list of symptoms - most of which I have!! Even things that I didn't think were related, seem to be. The brain fog which looks like cognitive decline is the scariest one though.... :(
Trying to explain how adrift I feel to my GP is an exercise in futility. She is a late 30-something who hasn't got a clue!
Of course, I have been masking for DECADES and it is only now, that I finally have my official diagnosis in my hot little hand that I feel a little bit more free to be myself - only to discover that people around me are not very comfortable with it. At all.
The most understanding is actually my 25 year old second cousin who is married to a woman, ASD and ADHD and just GETS me in a way that no-one else does (even my son, who was also diagnosed with ASD and ADHD). I barely have to say two words to her and she jumps in and lets me know very rapidly that she understands how I am feeling, despite our large age gap. It is SO nice spending time with her (and her wife, who is a little more reserved and not on the spectrum, as far as I know). I wish I had my cousin's confidence, to be honest with you, she dresses as she likes (with a LOT of colour!) and doesn't give a sh*t what people think of her. She is the most authentically herself person I know. And I love that about her :)
btw, I looked up the Canadian OT thingamy that you mentioned in another post, only to have trouble finding an OT locally I can afford. They are very hard to get in to, to the point where I thought about maybe getting some extra training to BECOME one, but there are too many hoops to jump through, I am too old to start something like that and it is very expensive :(
Still, it got me thinking about further study :) So there is that!
Thank you so much for your articles, they make a big difference in my life.
Just thought I would let you know that :)
Hope Sunday in NZ is being kind to you! xx
Hi Monica! It is lovely to hear from you, thanks for your kind words!
I am so sorry you are experiencing so many of these awful symptoms too, it's just awful.
Definitely scary as the cognitive decline progresses and our capacity diminishes. I also make small gains and then it is devastating when I spiral again.
I am sure you are doing a great job of educating your GP, but you really shouldn't have to be. Who has the energy for that?!
Congratulations on your recent diagnoses! 🏆
It is great that your cousin gets you! I find it wonderful how our neurokin bonds transfer across generations and cultures. It is just so calming to be arounbd people who we don't have to overexplain ourselves to.
Oooh the Canadian Occupational Performance Measure! I wonder if there are any YouTube videos of it? Maybe not as it is a therapeutic assessment tool and I expect heavily copyrighted. You would make an awesome OT, but that would be a massive commitment to retrain!
NZ has been very calm this weekend after the horrendous storm we had midweek. It was so scary! I hope things are settled in Aussie for you this evening :) xx
Thanks so much for sharing your experience. This is so helpful to understand.
I have many questions about menopause, but I will limit myself to two!
1. Does anyone know if trans men with hormone levels within a typical cis male range experience menopause? I also wonder if this varies with a hysterectomy or not. Just curious, as this is not my personal experience.
2. I am also curious about the overlap between MCAS (mast cell activation syndrome) symptoms and perimenopause symptoms. For example, the bladder pain/feeling like a constant UTI, face flushing, and digestive distress. I have or have had these symptoms. I've heard some folks describe an allergic reaction to hormones. Is it possible it's the mast cells overreacting that could cause some of these perimenopause symptoms?
Hi Rey!
What fantastic questions!
1. Does Greg's Q&A resonate with you? https://open.substack.com/pub/samgallowayaudhd/p/the-auti-peri-q-and-a-greg?r=2pp93s&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false
As far as I am aware, being post-menopause is a concept that denotes a year to the day from your last bleed if it's a "natural menopause", i.e. not a medical meno.
I am cis female and in a chemical (temporary and reversible) menopause with add-back hormones via HRT, hoping for a hysterectomy to put me into an immediate post-menopause state. That is a surgical menopause.
I am not sure what the hormone levels are post-meno for cis or trans people, but as soon as the ovaries are removed and no more menstrual bleeding, the person is considered post-menopausal.
Some people will have a hysterectomy removing the uterus/womb, but retain the ovaries. As far as I am aware, the person can then no longer menstruate, but the ovaries are left in to retain their hormonal function. I wonder if that makes them post-menopausal..? 🤔
2. I don't know anything about the intersection of MCAS and peri but I can't imagine it's good! It sounds likely that some people who are extremely hypersensitive may be allergic to hormone therapy. I wonder if that is more likely when using synthetic hormones, or taking them orally rather than transdermally. But sorry I don't know the answer.
Yes exactly that and I think a side effect to the Progesterone which I started taking as a pessary. So yes now I think I can't take progesterone - orally it made me feel like a zombie, vaginally I got hives! So hard to balance. I really hope you get the hysterectomy soon and that it helps. I take herbs too and they do support me a little bit. Have you tried a herbalist at all?
Not spoken to anyone about the hallucinations as I was too freaked out! But they went with HRT so I am assuming they were related. My friend has experienced them too xx
Oh progesterone is hard for me to tolerate, I totally empathise!
No, I haven’t seen a herbalist. What have they advised? xx
Yes the Progesterone thing is so hard as it seems like it is such an important part of the puzzle but causes loads of side effects for me. With the herbalist I will take various tinctures as I titrate down tye HRT and different symptoms come up. I have been on and off herbs for years. They 100% help with reducing my histamine issues and provide other support. Whether they're strong enough to cover the whole gamut of my symptoms time will tell! We start the detox in two weeks. Hormone support and support for my liver to detox all the hormones, reduce pelvic congestion. Peony, Dandelion, St Johns Wort, Chatavari, Wild Yam all mentioned... 🌱
Oh I’m excited to hear how it all works out for you! 🌱
Wow. So many of these have been with me all my life because I was born with Chiari Malformation in addition to auDHD. You taught me that I have only been in peri since 2022. FML that’s when my cycle became erratic. I just want it to end. Though, wanted THAT since the first one! #nonbinaryproblems
Oh, I know! I’ve always hated periods too. I’m so sorry, I wish you a speedy perimenopause and a blissful Second Spring! 🌸 😁
Oh gosh! Yes, all this! Thank you so much. I'm a recent follower here but this has meant still much this morning. I am really feeling it all at the moment- I also have long covid/ME, come to the realisation over the last couple of years I am probably autistic (therapist agreed) and I'm in the midst of dealing with my late Father's messy estate, 18 months after he suddenly died. I regularly just don't know what is happening, what 'condition' to blame, what to do about it and hugely guilty about how much I'm having to lean on my partner. I do have a sympathetic GP, who first suggested perimenopause to me and I've started hrt but I've now realised one of my masking things is that I don't really express fully how crap I'm feeling. The only person who sees my shutdowns is my partner (my Dad was the only other person I collapsed on). I did have a very good conversation with a (non Nd) friend this week who also gets the overwhelm so I feel reassured in a way, but ultimately, when is it going to end?! But, pheouff, sorry for off loading all that but I felt so validated reading all that. Thank you.
Hi Rachel, you are so welcome here. I am sorry it is all so full on for you currently. I am in Aotearoa NZ and need to get the kids and myself to bed now (it is 9pm ish) but I didn't want to read and run. Looking forward to reading through your comment again soon and being able to support you. In the meantime, the archive is full of posts that might be useful, or validating, at the very least. I will share two articles below that I think might fit with where you are currently at. Chat soon xx
https://open.substack.com/pub/samgallowayaudhd/p/dear-friend-how-low-can-you-go?r=2pp93s&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false
https://open.substack.com/pub/samgallowayaudhd/p/autistic-shutdowns-meltdowns-inertia?r=2pp93s&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false
Oh thank you so much for replying, I hope bedtime went smoothly. I'll have a look at your suggestions x
I have had most of these symptoms. I now pre-cursor most of my work meetings with '.I am peri-menopausal amd will most likely forget what you ask me, so please wrote it down and remind me often'. Before starting HRT one of the scariest symptoms was I actually started hallucinating. I frequently jumped because I could see people that weren't there out of the corner of my eye and once saw a dead person by the side of the road! Now on HRT with the sun shining brightly ai have discovered I have developed Solar Uticaria and possibly heat Uticaria... Five minutes in the sun and any exposed skin is bright red, crazy itchy, hot and sore. I am going to try coming off HRT because of it working with a herbalist but I am quite terrified about the potential return and worsening of symptoms. As one of my good friends said, at least in pregnancy you know you only have 9 months but peri and menopause you have no idea how long it will last - I hugely struggle with this. How are we all still smiling and standing? I have no idea! Sending you and your hip love. For me the hormone surges around ovulation seem to turn it pelvis to liquid, something to do with hypermobility it's bloody exhausting isn't it! Amd yes our bodies tell us so much more than the doctors can xx
Hi Chloë, I haven't heard of urticaria before - are you getting hives from UV and heat exposure? That is awful! I don't suppose it might be a sensitivity to/side effect from a particular HRT brand you're using, rather than the hormones themselves?
Why is it all such a hideous minefield? Yes, I was thinking about pregnancy pelvic pain and how finite it was. But then the postpartum 💩 would kick in. It is all so unfair.
People say how much better they feel after a hysterectomy. I am desperate for one and to be able to finally make perimenopause end. The not knowing how long is so so cruel.
Your hallucinations sound so scary. Have you seen anyone about those? I haven't heard of them before! Now that you come to mention it, I think I used to have those in puberty, but intrusive thoughts were a constant.
Poor you still ovulating and having to go through it all so regularly. Wah! xx
Wow Sam, this is an EPIC post. What an amazing act of service to pull this all together.
It feels like perimenopause is just like some evil batman villain coming along to fuck around with us midlife women in the most vile ways they can think up. I recognise a ton of those symptoms.
I'm really lucky to have found (on a friend's recommendation) the woman GP at my doctors surgery who is actually really supportive and understanding (and on HRT herself), compared to the previous, also female but much older, GP I saw who dismissed my hormonal acne, which was one of the first main changes I got, back in 2021, as being caused by my pandemic face mask. The gaslighting is real...
My most debilitating symptom is a hundred percent my migraines. But I've also seen weird upticks in allergic symptoms when no obvious triggers were present. And I have this persistent itch round my left jawline up by my ear that drives me CRAZY. And I wonder if that is a symptom too (you mentioning the tingly scalp reminded me of it).
Hi Vicki, thanks for your kind words!
Medical dismissal is real and rife sadly. I’m so glad you got an appropriate response after a second opinion!
Your migraines must be horrendous. Have you noticed a pattern to them alongside your menstrual cycle? Are they new for you in peri?
I’ve had the acne and rosacea too, although it’s better managed now presumably with well titrated HRT?
Hair loss is ongoing though, and I find it really upsetting.
The itch around your jawline sounds frustrating! I just had a quick Google and my own doctor’s website popped up! She says it’s called pruritis and is due to:
- decline in oestrogen levels
- reduced sebum production
- loss of skin elasticity
- nerve sensitivity
- environmental and lifestyle factors
Here’s her webpage:
https://www.femalegp.co.nz/health-knowledgebase/perimenopause/12