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Thread: Practicalities of menstruation and MND

  1. #11
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    Hi Sarah..the other option, if you prefer not to take medication, and if your gp thinks it’s suitable, might be a coil. They also stop periods altogether.
    I hadn’t even thought of this problem for women with MND!
    Jen x

  2. #12
    Forum Member MNDConnect's Avatar
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    Hi all

    Thanks for all of your comments and suggestions. Also thank you for the really useful feedback.

    We do sometimes reply to people via private message instead of directly on the forum as it can be easier to have a one on one discussion. The subject raised was an interesting one and not one that we've really been asked about before and so it is something that we are looking in to. I believe my colleague who is helping with this is currently waiting to hear back from one of our care centres that we have contacted to see if this is something that they have any advice on.

    We will take on board all of your feedback and post our replies on to the public thread in future. It was good to hear and a really good point that our response could be useful for someone else.

    Thanks again everyone

    Best Wishes

    Rachel

  3. #13
    Forum Member Ellie's Avatar
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    Thank you Rachel for your magnanimous post - its content and spirit in which it's written are much appreciated.

    Even in 2018, we women have a daily struggle for equality in all aspects of life and, by hiding discussion - unintentional though it was - merely perpetuates the idea that periods are somehow shameful.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #14
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    I take northisterone and haven't had a period except when the hospital I was in didn't order it in time

  5. #15
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    Particularly thanks for this one Ellie. I had no idea that there was a blood test which could indicate whether a person is close to menopause or not. Hopefully MNDA will include this gem on any information they put together. The various health visitors and nurses who i asked just advised me of two things Ďdonít mess with your hormonesí and Ďpadsí! It did all feel a bit 1950s. Thanks to you and others who have responded, Iíll be calling my doctor on Monday! xx

  6. #16
    Forum Member MNDConnect's Avatar
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    Hi all

    I've spoken to our Care Information team who produce all of our information on MND. I've asked if they would please consider adding information about menstruation and MND to our existing range of information.

    SarahA, I'm glad that you are going to speak to your doctor today. There are various options available to women nowadays to help them to manage their periods including medication, the implant or a coil. Each has it's pros and cons and it's certainly worth speaking to your GP to discuss what might be the best option.

    Best Wishes

    Rachel

  7. #17
    Forum Member MNDConnect's Avatar
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    Menstruating and MND

    Hi All,

    After speaking with Sarah last week about menstruating and MND I said I would contact one of our care centres to ask what information they were giving to women regarding their periods. Please see below her reply.

    It is a matter of choice. The pill will affect the hormones because that is how it works.
    Even taking the pill, break through bleeding may be experienced, but it would not be as heavy as a period.
    Some women have chosen to have a Depo-Provera injection https://www.nhs.uk/conditions/contra...ive-injection/

    She felt that individuals should discuss their options with their GP, but if they did decide to take hormone pills it would not affect the MND.

    We are going to be speaking to our Care Information team about including a section on menstruating and MND into our publications and will let you all know in due course where you will be able to find the information.

    With kind regards

    Jacqui
    Senior MND Connect Adviser

  8. #18
    Forum Member Lynne K's Avatar
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    I had a coil many years ago and it made ridiculously heavy periods. I couldn't go out if the house. So I had to have it taken out. I'm surprised to hear that they stop periods. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #19
    Forum Member MNDConnect's Avatar
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    Hi Lynne

    There are different coils and they can stop periods. They don't do this for all women though. I think one of the difficult parts when dealing with menstruation is that every woman is different and what works for one won't necessarily work for someone else and it can be a lot of trial and error to find something that works.

    Best WIshes

    Rachel

  10. #20
    Forum Member Lynne K's Avatar
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    OK thanks Rachael
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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