AUTISM AND PMMS ( hormones ) — Scope | Disability forum
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AUTISM AND PMMS ( hormones )

smileysun Member Posts: 3 Listener
edited April 2021 in Autism and neurodiversity
Hello everybody :) I hope you are all well first of all! 

I just really really need some advice and help from people who have the same mind/brain as me! I have struggled immensely for years with my PMS it seems to be getting worse :'( and it honestly turns me into a crying, sad, anxious wreck beyond my control, so much so that I fear it every single month, :( 

The rest of the time im really happy and fine so its a very sudden change and it's hard to come to terms with :( 

I have tried birth control and it doesn't seem to suit me infact, it made me more depressed but I am open to suggestions of any sort or just similar experience storys to help me along the way!

Can anybody offer any advice? :( Im at such a loss and im so fed up and sick and tired of this.



  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    edited April 2021
    Hi @smileysun and welcome to the community :) Thank you for sharing and I'm sorry you feel like this. I just want to clarify that we are not medical professionals therefore we cannot give medical advice. However, what we can do is support you and share our experiences with you :)

    For a while now, I've been convinced that I may have Aspergers/ASD but not yet diagnosed. I feel the exact same when it starts and lasts for a few days. I convince myself that it is just hormones, but that's just me.

    Have you spoken to your GP about how you feel?
    Disability Gamechanger - 2019
  • smileysun
    smileysun Member Posts: 3 Listener
    Hello! thankyou!! It's okay, I don't really want medical advice just experience of what has worked with other people, as when speaking with drs before they tend to dismiss the autism aspect or don't have enough research on it, which is fair enough because they're not 'specialist ' but I have to do it myself! ( the research ) 

    Thanks so much for sharing your experience, Mine, Lasts up to 7 days before and up to 4 days whilst its happening to me :( so it's quite a long amount of time, and I feel very very sad and teary and all my positivity gos away! :( I have spoken with my gp and they keep offering new birth control pills, I am hesitant as the last ones made me very down :( 

    Have you gone for a referal yet regarding your diagnosis? :) Id be happy to chat with you about this if you have any questions etc, thanks again for the help! :) 
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    For me, I really need to keep myself mentally busy, like completely immersed in something and this has helped me over the years, but since having my daughter, I've struggled to do this when my period starts. Do you have any hobbies?

    Thank you, I appreciate that :) I have an appointment with my specialist at the end of this month, so will speak to him and see where we go from there :)
    Disability Gamechanger - 2019
  • smileysun
    smileysun Member Posts: 3 Listener
    I am very much the same, this always helps distract me from how im feeling, but due to lockdown there are times where I am struggling, I think I just need to make a conscious effort to keep busy! 

    I love anything arty, making things, reading, writing poems etc.

    I also have taken to going on the exercise bike once a day! and this has significantly lifted my mood! but it soon fades away :( It's stilll great to keep it up though! 

    Wonderful, At first I struggled with my diagnosis but a year in and im actually coming to terms with it and have found it SO useful, I am not half as harsh towards myself in the situations I used to be, as I realize some things just are not my fault! :) 
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    I think it's safe to say that lockdown has affected everyone in whatever shape or form. It has been, and still is for some, very difficult.

    Have you tried diamond painting/art? I tried to get into it a few weeks ago but due to my vision impairment I ended up feeling more frustrated than enjoyment :lol: but I can definitely see how people love it :)

    I'm always harsh on myself, force of habit, but hopefully this will help explain a few things :) I'm glad that you've come to terms with your diagnosis, accepting a diagnosis can be a challenge in itself!
    Disability Gamechanger - 2019
  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
    Hi @smileysun :) 

    Welcome to the community! It's great to have you with us. 

    Sorry to hear that you're struggling with your premenstrual syndrome (PMS). I just thought that I would stop by and share some of my experiences, in case that's helpful to you. 

    I wonder, have you come across the term premenstrual dysphoric disorder (PMDD) before now? That's what I was diagnosed with a few years ago. Essentially, it's a form of PMS but it's thought to cause heightened symptoms and that it's a more severe form of what we generally think of as PMS, PMT, etc. So, when we talk about premenstrual symptoms, actually there's potentially a range of different conditions that might refer to, including what's known as premenstrual exacerbation of an existing disorder (PME), which can also have an impact on other co-existing issues as well. 

    In terms of your own experiences, definitely the best people to speak to are going to be your GP and your specialist. As @Ami2301 says we can't provide any medical advice, but we can certainly provide you with some moral support!! So, as a starting-point - have you spoken to any of your doctors about how your premenstrual symptoms have been making you feel? And is that something that you feel comfortable doing? 

    Plus, you might want to take a look at the following links for some further information and sources of additional advice:
    • MIND - What is PMDD?
    • National Association of Premenstrual Syndrome, NAPS (UK-based organisation)
    • International Association for Premenstrual Disorders, IAPMD (US-based organisation)
    Hope that's helpful and please do feel free to come back to us if you have any more questions about this.

    Welcome again - and I look forward to seeing you around the community :)
    Online Community Coordinator (she/her)

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