PMDD

loulou_
loulou_ Online Community Member Posts: 3 Listener
in Rare, invisible, & undiagnosed conditions

Hi,

I don’t know if this is allowed here but

I’m sure I have pmdd,

I was diagnosed with pcos when I was around 16/17 due to irregular periods and cysts on my ovaries

I’m pretty sure I suffer with pmdd but I don’t know how to go about getting help for this or speaking to my gp for a diagnosis. I think I would really benefit from having this

I am also diagnosed with autism, anxiety and depression

Because of the certain benefits I get for my disability, I think it could be useful if I can get my suspicions on pmdd validated and diagnosed so I can have this on my medical record

If anyone knows how to go about this please let me know.

Thanks in advance

Comments

  • Bluebell21
    Bluebell21 Online Community Member Posts: 1,530 Pioneering

    Hi @loulou_ welcome to the Community. I hope you enjoy your time on the forum.

    The following link might be of interest. Scroll down to the second half of the page and it mentions PMDD.

    https://www.nhs.uk/conditions/pre-menstrual-syndrome/

    Take care.

  • Santosha12
    Santosha12 Online Community Member Posts: 3,775 Championing
    https://forum.scope.org.uk/discussion/144483/pmdd

    Hi @loulou_

    I don't know if you've heard of the PMDD Project. It is a UK charity (I think they may be the first one set up to help with PMDD) and you can find them at www.pmddproject.org

    Under 'Resources' there is lots of helpful information including 'How to get a diagnosis' which also explains what sort of information is helpful to provide to your GP including diarising symptoms etc for at least two menstrual cycles.

    From my nursing days I recall PMDD was very misunderstood. I hope they can help you and there may be others here who have more knowledge of it that could help you.

    With my very best wishes to you.

  • loulou_
    loulou_ Online Community Member Posts: 3 Listener

    @Santosha12 thanks so much

  • Santosha12
    Santosha12 Online Community Member Posts: 3,775 Championing
    edited March 5

    You're very welcome @loulou, I hope you find that it really helps you.

    A patient I knew with PMDD, well, I can only say I was very underwhelmed with the support available to her but that was c 10 years ago so I hope things have improved since.

    There is also a website called 'Health Unlocked'; although it's international there are lots of charity forums on their from the UK, I think they use that rather than running their own forums. You may a group on that (possibly even the PMDD Project themselves) where you can chat and ask questions of others.

    Edited to add www.stuffthatworks.health I've just checked and this has forums etc too including for PMDD. I never found it as quite user-friendly as Health Unlocked but it might be worth a look.

  • Catherine21
    Catherine21 Online Community Member Posts: 9,561 Championing

    Very close to my heart from age of 12 till menopause i had pmdd undiagonsed awful no words to describe 10 days before period i went for years bqck and fort to doctors what you have to do is keep a diary for 3 months track your cycle moods ect and present it i didnt have the patience to complete a diary so i never formally got diagnosed as had other menatl health issues but from my heart pmdd is no joke so yes id book a doctors appointment tell them you now you have pmdd and start a diary ps sorry im terrible at explaining im in menopause and all symptoms from rage gosh rage was a big one to bloating to crying and many more symptoms was so much less severe my heart goes out to you i think some doctors are getting more knowledge on pmdd goodluck

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