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

Thanks. Yeah PCOS is annoying but my silver lining is that at least it lowers my chances of having children (I really don't want them!) plus being on the pill lowers that even. I've just started on my third pill after the first two weren't helping me. Hopefully this one is better. Might take me a while to find one that agrees with me! 

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.

Wow, it sounds like you've really been through the grinder and back again. I am so sorry you had to suffer so much and they fobbed you off for so long.

Disambiguating Cynosure said:

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.

I agree. I just wish my doctors would stop assuming that the medications they prescribe me affect me like the "average person" (the majority on the bell curve), when time and time and time again I've been back to them because of reactions or unbearable side effects.

Hey.  

I'm really sorry to hear about your PCOS and how it has impacted your life. It's cruel that chronic illness always comes with a trade off—take this to fix X, but then suffer Y. The timing does point to more than mere coincidence. Is it worth trying a different pill? I've found even the brand vs the generic version with same active ingredients have different affects on me because of what they put in the base.

I also think doctors are quite dismissive about side effects in general, and mental health side effects in particular, more especially if you're a woman. The medication I was prescribed for my chronic migraine also left me feeling suicidal for several weeks before I jacked it in and decided no more tablets. My GP took this to mean that my migraine was better.

Nugget The Chicken said:

Truth be told I wish they'd just get rid of my ovaries

I'm so with you! Unfortunately, I've read if they do that, they'll put you on the pill (or HRT) to offset the loss. Far easier to just be born a man. 

...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!)

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. (  )

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.

Heya

Around May this year I went on the pill due to my Polycystic Ovary Syndrome and it has greatly helped dealing with that. I have lost a lot of weight, I don't get acne on my face, i don't get as many headaches, my periods are regular and manageable, and period pain doesn't leave me in agony! Unfortunately, since taking it it's greatly affected my mental health. I've suffered from depression to the point of suicidal feelings, my moods have been up and down and actually, I feel more Autistic too. Maybe I've just become more self-aware about my Autism, but the timing makes me think maybe not. 

So yeah, I do relate to what you're saying. Truth be told I wish they'd just get rid of my ovaries so I didn't have to take the medication at all! 

Endometriosis is not nice at all and can be very debilitating :( Sorry to hear that you suffer from it.

The main thing I am noticing at the moment is an increase in tiredness and more joint pain but not sure that is just seasonal (it getting colder and darker) and my age  Oestrogen is meant to help to reduce inflammation in the joints, so as it's levels decline, inflammation can increase, causing discomfort and menopause-related arthritis. 

As to whether it affects my autistic symptoms, or not it is a difficult call atm - but I will be mindful of it going forward... :)

Hello and thank you for sharing your experience.

I hope your progesterone-only pill helps with your menopause symptoms because that sounds really challenging. It will be interesting to know if, in time, you also notice any impact on your autism symptoms and behaviours as a result of being on progesterone.

I don't blame you for preferring to avoid artificial hormones. I'm leaning towards staying medication-free for now, but it will depend what happens to my endometriosis as last time I ended up with a massive rupture requiring emergency surgery and only narrowly avoided a blood transfusion, so definitely don't want a repeat of that. :)

Hi Nessie

Thank you for opening a women's only post.  I am almost 45 years old and have recently started to take the progesterone only pill as I transition through to the menopause.  This is to manage changes in my periods which have become much shorter and heavier as a result  meaning a very heavy period of a couple of days which is not a practical situation as I work as a teacher and this means several hours before I can get to a bathroom!

I was previously on the pill (combined) before the birth of my son and then after his birth did not need to use any artificial hormones thankfully until now.

I don't like being on the "pill" or taking any medication as I do ultimately like to be in tune with my natural self without artificial enhancement.  Not sure how long the menopause process will last so hopefully only a short term transition! :)