Is article voice over a new thing youve done? Love seeing options for accessibility for people.
Medical misogyny, in my experience in New Zealand is very pervasive though it’s still so normalized everywhere in society that we don’t notice it always.
Hi, no voiceovers have been available the whole time since I joined Substack but I think still relatively recently in terms of the platform..? I get annoyed with the AI breathy male Cali voice that doesn’t represent me, so I am going to try and voiceover all my posts now retrospectively!
Congrats on getting the article done - and thank you for the great overview of the program as well as misogyny in medicine and the unique issues facing ND women in perimenopause.
When you mentioned “your labs look great” it made me think of the first doctor who really believed and validated my concerns that I had a bleeding disorder.
It shouldn’t have taken until my mid thirties - I had severe bleeding and bruising, anemia requiring transfusions and bleeding complications in every surgery I had. Yet the doctors always said “your labs look great you’re fine”.
This doctor said: “I believe you. Let’s make sure we aren’t missing anything.”
He did thorough blood work that had never been done before - and when nothing turned up there he had a geneticist evaluate me for vEDS. Turns out THAT was the answer. My labs may have “looked fine” but I was not fine.
We all deserve care like that. It was validating but could also be life saving - now I have a prophylactic treatment plan in place for any procedures where blood loss is a risk.
We definitely all deserve great health care and treatment. I’m sorry it took so long for you to get it. Your story reminds me of Polly Atkin’s memoir which I’m halfway through: ‘Some of Us Just Fall’.
“We are not using HRT for superficial gains, nor as an elixir of youth. This isn’t a case of wanting our skin to look younger, nor to jump on a bandwagon not wanting to miss out. Our regressions are real and our mental health is especially vulnerable. We just want to stay alive, and many of us rely on buffering our fluctuating hormones in midlife to do just that.”
Newly diagnosed AUDHD and I teared up reading this. A complete hysterectomy saved my life one year ago, HRT is so beneficial to my mental health! One of the reasons that I don't share a lot about my story is because I know from personal experience one way is not the only way. My PMDD symptoms were so severe I had an active safety plan. Women and AFAB have to be given all the options in front of them to make a decision themselves. It took me two doctors and a hospital community grant to afford my procedure because insurance did not deem it medically necessary to my livelihood, even though I was ready to end it.
I'm in the states and access to reproductive healthcare literally hangs in the balance and I have two AFAB kids who will likely have PMDD as well and I want them to have a choice in what happens to their bodies. You might have seen it already, but the multiple hormone sensitivity theory research is at least starting to point to the possibilities of the real mental health crisis that peri-menopause for autistics with PMDD and ADHD. The likelihood of co-occurence is over I think 98%.
Your voice is so important and makes me realize the importance of sharing my experience and my story. Thank you for this space.
Hi Kim, please keep sharing your story! I’m on the third month of my Zoladex and currently think I’d trade my chemical menopause for a surgical one. But it doesn’t work like that unfortunately, ha ha!
Thanks so much for flagging up multiple hormone sensitivity theory research, I’ll have to look into it! Do you have any favourite links/resources on the topic? 💕
HRT definitely took some adjusting for me as well, and sometimes they change my brand which is frustrating because it will throw me for a loop for a few changes. I'm currently on Dottie because a year ago with the support of my doctor I opted for a complete hysterectomy and they took everything. Honestly I've not been able to find a lot of research on it, but I'm still tracking the multiple hormone sensitivity theory, and I've found this doctor's perspective to be one of the most hopeful I've seen. Bev Thorogood's Ted Talk on peri-menopause and ADHD is SO good. Definitely a must watch. The book The New Menopause is a great resource and so is Women's Guide to ADHD (maybe? I'll go track it down. Iapmdd website has great information and there's even a fundraising virtual walk you can hold every year, PMDD merch support groups and community as well as awareness images and resources. The interesting thing is, dopamine plays a huge roll in ADHD, autism and PMDD and because estrogen is also a neurotransmitter even normal fluctuations in that hormone impact those with ADHD and PMDD severely. Which is why peri-menopause is when a lot of symptoms emerge, because of these drastic changes. And because PMDD is connected to ovulation, the luteal phase is when symptoms begin cyclically progressively worsening until bleed. Nobody asks women to remember when they ovulate, it's always the last day of your period so it often doesn't connect until you really start tracking, mapping mood, symptoms etc.
Where I think people get the peri-menopausal experience with PMDD and ADHD wrong is they judge treatment methods based on whether symptoms disappear completely. Based on the nature of the disorder I don't think they ever do. I think they just become manageable. That's best case scenario. That said, I'd make the choice again because what good is health if you can't really live? I was alive, but it was no life, I wasn't living, I was just alive.
The question we should be asking isn't why would a woman be willing to undergo treatment knowing the rest of their years carry a higher risk of cardiac, cognitive and skeletal decline? The question should be what kind of severe symptom hellscape could possibly cause someone to make that impossible of a choice
Yes please to Sharing your story. I believe that the greatest change will happen in the sharing of our stories. It’s why I’m writing books on my own journey with migraine (learning to rebalance my hormones has been a big part of it so I have an interest in hormonal health). It feels a long road but I truly believe it will have the greatest impact. Even if that ends up being for our future generations (to me, it’s worth it).
I haven’t seen the panorama program since I boycotted the bbc for reasons. However, I have just stopped taking estradiol since a medicine review revealed I hadn’t been offered any progesterone to take in addition. I have been offered a scan to check I am ok but if I am not there will be some hell to pay. I did have a mirena coil and apparently that was the progesterone - none of this was ever properly explained to me by any of the doctors I have seen. The coil came to the end of its life and I had it removed. I didn’t want another and all that was suggested is other forms of contraception. I thought they were offering me contraception not a form of progesterone that I needed to protect my womb from possible cancer.
I have actually got more angry as I have typed this reply. Thank you Sam for highlighting this, I’m very sad to be finding this all out in retrospect now that I may have already put my body in danger.
So close to being brave enough to write my own piece.
Oh I’m so sorry you’re going through this. I hope the scan is extremely reassuring, please keep me posted. It’s ridiculous how little we are made aware of our own health and safety. Thinking of you. You will know when the time is right to write, it can be retraumatising to do it too soon. Take care of yourself 💕
Learning so much through reading your posts about ND, autism and perimenopause.
I feel a lot of anger over the suppression of women and the imbalance that’s been caused to our bodily systems. Resulting in mental ill health, impacting our physical health. And emotionally never having had been taught to regulate our emotions.
Not receiving emotional support throughout my life has had the most catastrophic impact on my physical and mental health, leading to breakdown and disability by chronic illness.
Knowing that this could be avoided and we needn’t be suffering to the extent we are - on top of all the dismissal and gaslighting - makes me feel even more angry.
It’s infuriating isn’t it, Amber? You’re doing an amazing job at supporting women now though so maybe it has had to happen this way for us all to collectively rise up and take nothing for granted 💪
I absolutely believe there is a higher purpose to it. And that, like you say, there is a collective rising of us all. We’ve gone about it a long way and as painful and infuriating as it is, it’s all part of our evolution, we’re here to learn and grow💛
Hey there, perimenopausal and autistic, here. I recently started using a 24hr/1 week estradiol patch with a dosing of .25mg and a nightly capsule with a 100mg dose of progesterone. I had not wanted to take progesterone because my experience with it while taking birth control had been scary. Until we (I) figured out the issue, I was given birth control where the hormone amount changed across days to mimic the natural cycle. It made me so unstable I would get suicidal before my period. It was a living hell. So, before going through my insurance, after 2 years of feeling crappy, I finally ordered an estrogen only product online, still not wanting to chance taking progesterone.
I mentioned it to my gyno while there and she informed me that taking estradiol without also taking progesterone would raise my risk of uterine cancer and they would not prescribe one without the other. I had been told this 2 years prior by some other medical personnel. I explained my history with progesterone and she stood firm insisting that the amount I would need to take was the lowest possible and much lower than the amounts used in birth control. I was scared of becoming emotionally unstable, but being desperate, I decided to try it. The first two days were not good. I didn't feel right mood wise and felt less stable. But since that point in time, I have been doing pretty well and I feel like I have more energy. I can only wonder if I were unstable if I would have been allowed to not take the progesterone and continue with the estradiol patch or if I would have been told no and denied care altogether... and forced to go online and take otc, non fda-approved products and just "wing it" with my health.
One woman I met 1 year ago had told me to ask for them in separate pills and just simply throw out the progesterone and lie to the doctor. I didn't feel comfortable with that and I don't want that kind of relationship with my health care folks, however, I also don't want to be forced to take something that isn't working for me.... fortunately for me it seems to be working at the moment.
I took part in an online study about perimenopause and autism that was a joint study between the UK, Canada (?) and a few other European countries. Until I had seen that research, I had no idea that autistic females experienced perimenopause differently and I had spent over a year being sent to the Emergency Room for weird symptoms none of my doctors recognized... -Dawn, USA.
Hi Dawn, thanks for sharing your story. It’s really valuable to us all. As an autistic, I can’t lie to doctors who are treating me. I’m glad you decided to stay honest with your health provider, the trust needs to work both ways.
Thank goodness you’re doing well on the progesterone and I totally empathise as I react badly to too much progesterone too. But weirdly it’s fine via my Mirena IUD, and localising the progesterone pills (Utrogestan) by using them vaginally rather than orally. Much better for my mood, acne and bloating if not ingested. But that’s one you might want to discuss with your doctor.
Sounds like the survey you participated in was by Dr Rachel Moseley and her colleagues. She is so lovely!
Urgh, getting denied care and support by ER doctors is the worst 😭
Is article voice over a new thing youve done? Love seeing options for accessibility for people.
Medical misogyny, in my experience in New Zealand is very pervasive though it’s still so normalized everywhere in society that we don’t notice it always.
Hi, no voiceovers have been available the whole time since I joined Substack but I think still relatively recently in terms of the platform..? I get annoyed with the AI breathy male Cali voice that doesn’t represent me, so I am going to try and voiceover all my posts now retrospectively!
Congrats on getting the article done - and thank you for the great overview of the program as well as misogyny in medicine and the unique issues facing ND women in perimenopause.
When you mentioned “your labs look great” it made me think of the first doctor who really believed and validated my concerns that I had a bleeding disorder.
It shouldn’t have taken until my mid thirties - I had severe bleeding and bruising, anemia requiring transfusions and bleeding complications in every surgery I had. Yet the doctors always said “your labs look great you’re fine”.
This doctor said: “I believe you. Let’s make sure we aren’t missing anything.”
He did thorough blood work that had never been done before - and when nothing turned up there he had a geneticist evaluate me for vEDS. Turns out THAT was the answer. My labs may have “looked fine” but I was not fine.
We all deserve care like that. It was validating but could also be life saving - now I have a prophylactic treatment plan in place for any procedures where blood loss is a risk.
We definitely all deserve great health care and treatment. I’m sorry it took so long for you to get it. Your story reminds me of Polly Atkin’s memoir which I’m halfway through: ‘Some of Us Just Fall’.
I will check it out!
“We are not using HRT for superficial gains, nor as an elixir of youth. This isn’t a case of wanting our skin to look younger, nor to jump on a bandwagon not wanting to miss out. Our regressions are real and our mental health is especially vulnerable. We just want to stay alive, and many of us rely on buffering our fluctuating hormones in midlife to do just that.”
Newly diagnosed AUDHD and I teared up reading this. A complete hysterectomy saved my life one year ago, HRT is so beneficial to my mental health! One of the reasons that I don't share a lot about my story is because I know from personal experience one way is not the only way. My PMDD symptoms were so severe I had an active safety plan. Women and AFAB have to be given all the options in front of them to make a decision themselves. It took me two doctors and a hospital community grant to afford my procedure because insurance did not deem it medically necessary to my livelihood, even though I was ready to end it.
I'm in the states and access to reproductive healthcare literally hangs in the balance and I have two AFAB kids who will likely have PMDD as well and I want them to have a choice in what happens to their bodies. You might have seen it already, but the multiple hormone sensitivity theory research is at least starting to point to the possibilities of the real mental health crisis that peri-menopause for autistics with PMDD and ADHD. The likelihood of co-occurence is over I think 98%.
Your voice is so important and makes me realize the importance of sharing my experience and my story. Thank you for this space.
Hi Kim, please keep sharing your story! I’m on the third month of my Zoladex and currently think I’d trade my chemical menopause for a surgical one. But it doesn’t work like that unfortunately, ha ha!
Thanks so much for flagging up multiple hormone sensitivity theory research, I’ll have to look into it! Do you have any favourite links/resources on the topic? 💕
HRT definitely took some adjusting for me as well, and sometimes they change my brand which is frustrating because it will throw me for a loop for a few changes. I'm currently on Dottie because a year ago with the support of my doctor I opted for a complete hysterectomy and they took everything. Honestly I've not been able to find a lot of research on it, but I'm still tracking the multiple hormone sensitivity theory, and I've found this doctor's perspective to be one of the most hopeful I've seen. Bev Thorogood's Ted Talk on peri-menopause and ADHD is SO good. Definitely a must watch. The book The New Menopause is a great resource and so is Women's Guide to ADHD (maybe? I'll go track it down. Iapmdd website has great information and there's even a fundraising virtual walk you can hold every year, PMDD merch support groups and community as well as awareness images and resources. The interesting thing is, dopamine plays a huge roll in ADHD, autism and PMDD and because estrogen is also a neurotransmitter even normal fluctuations in that hormone impact those with ADHD and PMDD severely. Which is why peri-menopause is when a lot of symptoms emerge, because of these drastic changes. And because PMDD is connected to ovulation, the luteal phase is when symptoms begin cyclically progressively worsening until bleed. Nobody asks women to remember when they ovulate, it's always the last day of your period so it often doesn't connect until you really start tracking, mapping mood, symptoms etc.
Where I think people get the peri-menopausal experience with PMDD and ADHD wrong is they judge treatment methods based on whether symptoms disappear completely. Based on the nature of the disorder I don't think they ever do. I think they just become manageable. That's best case scenario. That said, I'd make the choice again because what good is health if you can't really live? I was alive, but it was no life, I wasn't living, I was just alive.
The question we should be asking isn't why would a woman be willing to undergo treatment knowing the rest of their years carry a higher risk of cardiac, cognitive and skeletal decline? The question should be what kind of severe symptom hellscape could possibly cause someone to make that impossible of a choice
Another great Ted Talk!
https://youtu.be/ybk2IzwV6Zg?si=NlpOgEEk30KpCm4j
Here's the link to the multiple hormone sensitivity theory breakdown: https://youtu.be/1K955r2Y1xI?feature=shared
Bev Thorogood's Ted Talk
https://youtu.be/eRPSvRWRoXg?si=y4TU3gml-8rHtmt-
Yes, wow - that is fascinating! It will take me a while to process all that and thanks for sharing it :)
Yes please to Sharing your story. I believe that the greatest change will happen in the sharing of our stories. It’s why I’m writing books on my own journey with migraine (learning to rebalance my hormones has been a big part of it so I have an interest in hormonal health). It feels a long road but I truly believe it will have the greatest impact. Even if that ends up being for our future generations (to me, it’s worth it).
Yes, we totally need to record this all. Too much has been swept under the metaphorical carpet until now 🧹
I haven’t seen the panorama program since I boycotted the bbc for reasons. However, I have just stopped taking estradiol since a medicine review revealed I hadn’t been offered any progesterone to take in addition. I have been offered a scan to check I am ok but if I am not there will be some hell to pay. I did have a mirena coil and apparently that was the progesterone - none of this was ever properly explained to me by any of the doctors I have seen. The coil came to the end of its life and I had it removed. I didn’t want another and all that was suggested is other forms of contraception. I thought they were offering me contraception not a form of progesterone that I needed to protect my womb from possible cancer.
I have actually got more angry as I have typed this reply. Thank you Sam for highlighting this, I’m very sad to be finding this all out in retrospect now that I may have already put my body in danger.
So close to being brave enough to write my own piece.
Thanks 💞
Oh I’m so sorry you’re going through this. I hope the scan is extremely reassuring, please keep me posted. It’s ridiculous how little we are made aware of our own health and safety. Thinking of you. You will know when the time is right to write, it can be retraumatising to do it too soon. Take care of yourself 💕
Learning so much through reading your posts about ND, autism and perimenopause.
I feel a lot of anger over the suppression of women and the imbalance that’s been caused to our bodily systems. Resulting in mental ill health, impacting our physical health. And emotionally never having had been taught to regulate our emotions.
Not receiving emotional support throughout my life has had the most catastrophic impact on my physical and mental health, leading to breakdown and disability by chronic illness.
Knowing that this could be avoided and we needn’t be suffering to the extent we are - on top of all the dismissal and gaslighting - makes me feel even more angry.
It’s infuriating isn’t it, Amber? You’re doing an amazing job at supporting women now though so maybe it has had to happen this way for us all to collectively rise up and take nothing for granted 💪
I absolutely believe there is a higher purpose to it. And that, like you say, there is a collective rising of us all. We’ve gone about it a long way and as painful and infuriating as it is, it’s all part of our evolution, we’re here to learn and grow💛
Hey there, perimenopausal and autistic, here. I recently started using a 24hr/1 week estradiol patch with a dosing of .25mg and a nightly capsule with a 100mg dose of progesterone. I had not wanted to take progesterone because my experience with it while taking birth control had been scary. Until we (I) figured out the issue, I was given birth control where the hormone amount changed across days to mimic the natural cycle. It made me so unstable I would get suicidal before my period. It was a living hell. So, before going through my insurance, after 2 years of feeling crappy, I finally ordered an estrogen only product online, still not wanting to chance taking progesterone.
I mentioned it to my gyno while there and she informed me that taking estradiol without also taking progesterone would raise my risk of uterine cancer and they would not prescribe one without the other. I had been told this 2 years prior by some other medical personnel. I explained my history with progesterone and she stood firm insisting that the amount I would need to take was the lowest possible and much lower than the amounts used in birth control. I was scared of becoming emotionally unstable, but being desperate, I decided to try it. The first two days were not good. I didn't feel right mood wise and felt less stable. But since that point in time, I have been doing pretty well and I feel like I have more energy. I can only wonder if I were unstable if I would have been allowed to not take the progesterone and continue with the estradiol patch or if I would have been told no and denied care altogether... and forced to go online and take otc, non fda-approved products and just "wing it" with my health.
One woman I met 1 year ago had told me to ask for them in separate pills and just simply throw out the progesterone and lie to the doctor. I didn't feel comfortable with that and I don't want that kind of relationship with my health care folks, however, I also don't want to be forced to take something that isn't working for me.... fortunately for me it seems to be working at the moment.
I took part in an online study about perimenopause and autism that was a joint study between the UK, Canada (?) and a few other European countries. Until I had seen that research, I had no idea that autistic females experienced perimenopause differently and I had spent over a year being sent to the Emergency Room for weird symptoms none of my doctors recognized... -Dawn, USA.
Hi Dawn, thanks for sharing your story. It’s really valuable to us all. As an autistic, I can’t lie to doctors who are treating me. I’m glad you decided to stay honest with your health provider, the trust needs to work both ways.
Thank goodness you’re doing well on the progesterone and I totally empathise as I react badly to too much progesterone too. But weirdly it’s fine via my Mirena IUD, and localising the progesterone pills (Utrogestan) by using them vaginally rather than orally. Much better for my mood, acne and bloating if not ingested. But that’s one you might want to discuss with your doctor.
Sounds like the survey you participated in was by Dr Rachel Moseley and her colleagues. She is so lovely!
Urgh, getting denied care and support by ER doctors is the worst 😭
Can I ask you what doses you are on? Mine are in the novelette I wrote above. lol I am just curious to know so I can compare.
I’ll DM you now Dawn :)