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Women only please: What is your experience of oestrogen and autism?

Nessie

I've been on and off the pill (but mostly on) since I was 16, when I was first prescribed the combined pill to manage acne. After my endometriosis was diagnosed aged 25, I was put on a progesterone-only pill as they discovered my endo was oestrogen-driven.

Just over 4 months ago, my prescription ran out and I decided not to have it re-filled, mostly due to the amount of chasing about on my part that is required every time I request it and then have to go through the rigmarole of having it reissued with the brand name (not the generic due to allergies) despite requesting this every time, and then finding a pharmacist to source it and/or arguing with a GP about why. So, yeah, I've had enough. This has come at a time when I've been in full burnout mode so please don't lecture me on the importance of taking medication etc. because I'll just ignore you. :)

The funny thing is, since coming off it, I've been feeling a lot more like my old self. For the last 7 years, I'd been completely numb inside and very placid and unengaged with everything, which I think my family all took as a good sign I had finally grown up and learned to manage my feelings and frustrations. However, for the last few months, I've been feeling a lot more autistic—sensory issues in particular and the associated irritability, but also frustrations bubbling up, short-term interests completely taking over my life for spells, significant sleeping difficulties etc.

My hypothesis is the progesterone-only pill artificially suppressed my oestrogen level, and as this is recovering it is having a significant impact on my autistic behaviour.

Have you had a similar experience, either on the pill or coming off the pill, or after menopause etc.?

If my autism is sensitive to oestrogen, then I'm hopeful that once I go through the menopause my autism will be less of a problem to me and those around me.

Note: I am not saying I'm only autistic because of oestrogen as, obviously, I've been autie all my life (as my family will definitely attest!), but, rather, the more challenging aspects of my autism seem to be amplified by my oestrogen levels. Can you relate?

Parents

  • Greetings "Nessie"; as I have allowance I say somethings I have wanted to say Publicly for Years... But mostly as I see " . " Post here ("Ellie" for a nickname) I also say Hi again.

    I am late forties, and used to be fobbed off with certain illnesses, which occurred once a month and at least every 15 days (!). Migranes, crippled in bed for a week, nausea... all that. Once I hit age 30, and it occurred to Me that I was being fobbed off - it was all in My mind, just a Woman, they said.

    At that point I decided to learn for Myself about Molecular Biology and Ancient Greek (!) - to understand the jargon which Doctors and Experts were saying at Me... and, Yes it changed My life. (!) I began by process of elimination, and cut off all foods which caused Me pain, one-by-one. 

    I was eventually (allowed) to find out that the pain was not all in my mind, and that I had not only Endometriosis but PCOS --- fat lot of good that was, telling Me in My Forties, I thought. (  Disappointed )

    After this I was prescribed "The Pill", but it caused Me a severe pain in the neck, literally, and only then did they admit that *that* new pain was likely a Blood Clot growing. So but for My giving up the Pill I would not be Posting here now.

    Then they prescribed Iron... which eventually caused a seizure so great that My entire left side seized up during a night... I had to walk it off, and again had to give that up. 

    I think I should end this post, now. My point was, everything works differently for everyone, including "medicines". I learnt about them (right down to the molecular level) in order to find out what worked for Myself and what did not.

  • in reply to Disambiguating Cynosure

    ...I forgot to sum up for Myself what this has to do with Autism (!). I would say that it has very little to do with "Autism" in general. Everyone is different. In Myself, I only realised that I might be Autistic, *after* plunging into deep research in order to find out what exactly was #&$@#!&@@&!$# crippling Me every Month or so. My Autism probably helped with ignoring Social Norms and advice when they kept saying "it's all in your mind, we'll take care of it/you, you're just being a Woman"... sort of thing.    (sorry!)

  • in reply to Disambiguating Cynosure
    Disambiguating Cynosure said:
    I would say that it has very little to do with "Autism" in general. Everyone is different.

    I think, in my personal experience, I would have to disagree. I feel we, as auties, are already living with a huge number of symptoms that often go unnoticed or unacknowledged by those around us (including doctors), and medication—especially hormone-based—can have a pronounced affect on our symptoms that won't be listed as recognised side effects in the patient information leaflet because, as auties, we comprise such a small subset of the population.

    I've just come across this Quora post and found the first response particularly insightful: https://www.quora.com/Are-birth-control-pills-okay-for-autistic-people-What-about-high-functioning-autistic

    I definitely agree that our autism does make us more persistent than most when it comes to getting to the bottom of an issue. Unfortunately, I always found the combination of my comprehensive medical research, precise recounting of details and symptoms, and matter-of-fact delivery resulted in doctors dismissing me as "attention-seeking" rather than actually ill. After 11 years of suffering, and the last 3 of those pestering my GP with, "I have endo, look", they got in all kinds of trouble when it ruptured and was finally diagnosed by a gynaecological oncologist who had to do an emergency laparotomy (I was so ill upon my emergency admission to hospital they thought it was cancer as my bloods were off the scale).

    What I'm saying is, t's awful we have to suffer so much to be proved right.

Reply
  • in reply to Disambiguating Cynosure
    Disambiguating Cynosure said:
    I would say that it has very little to do with "Autism" in general. Everyone is different.

    I think, in my personal experience, I would have to disagree. I feel we, as auties, are already living with a huge number of symptoms that often go unnoticed or unacknowledged by those around us (including doctors), and medication—especially hormone-based—can have a pronounced affect on our symptoms that won't be listed as recognised side effects in the patient information leaflet because, as auties, we comprise such a small subset of the population.

    I've just come across this Quora post and found the first response particularly insightful: https://www.quora.com/Are-birth-control-pills-okay-for-autistic-people-What-about-high-functioning-autistic

    I definitely agree that our autism does make us more persistent than most when it comes to getting to the bottom of an issue. Unfortunately, I always found the combination of my comprehensive medical research, precise recounting of details and symptoms, and matter-of-fact delivery resulted in doctors dismissing me as "attention-seeking" rather than actually ill. After 11 years of suffering, and the last 3 of those pestering my GP with, "I have endo, look", they got in all kinds of trouble when it ruptured and was finally diagnosed by a gynaecological oncologist who had to do an emergency laparotomy (I was so ill upon my emergency admission to hospital they thought it was cancer as my bloods were off the scale).

    What I'm saying is, t's awful we have to suffer so much to be proved right.

Children
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