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Thread: Practicalities of menstruation and MND

  1. #1
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    Practicalities of menstruation and MND

    Hello. Ive been looking for an MND helpsheet on the practicalities and options for managing periods with MND. I canít find anything at all on the subject? Please could you post the link.
    Many thanks
    Sarah

  2. #2
    Forum Member Ellie's Avatar
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    Hi Sarah,

    Hope you don't mind me posting.

    I am on the mini pill (progesterone only pill) which stops periods completely.

    It's a godsend!!

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

  3. #3
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    Have you had any side effects from that Ellie? I might well consider doing something like that but Iím loathe to do anything medical if i can avoid it as Iím 51 and hoping that my periods will stop of their own accord, but I really donít want anyone doing tampons and stuff for me, so would like to find out what the MNDA has discovered of peopleís experiences.
    Thanks for replying. Itís good to know what steps others have taken.
    Sarah x

  4. #4
    Forum Member Ellie's Avatar
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    No side effects at all Sarah.

    I wasn't keen on taking hormones but it was definitely the lesser of two evils for me.

    My first symptoms were in my hand, so once I could no longer manage tampons, I asked my GP and he prescribed it. I am now 49.

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

  5. #5
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    Thanks Ellie.
    MND Connect provided the following private (?) reply to me, which they were happy for me to post here. They are looking into providing more info.
    “I am replying to your post on the forum regarding menstruating and MND.
    Unfortunately we do not have any written literature regarding this.
    Is it that you are having problems with sanitary products and using them?
    There are alternative products other than pads or tampons you can use, such as a cup, which many people who have problems using standard sanitary wear find easier to use.
    You may wish to speak to your GP about taking a pill that helps stop your periods, but if you would rather not do this please let me know and I will send you links to the cup and also to sanitary briefs which can be used without a pad but unfortunately they do need washing out for re-use.
    Let us know how we can help you.
    With kind regards”

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    Hi Sarah,

    I immediately started taking the progesterone only pill, and as soon as I can get hold of the doctor I’ll have the implant. She reassured me that it has even lower hormone levels than the pill, and is almost immediately reversible if you have it removed.

    Love Lisa

  7. #7
    Forum Member Ellie's Avatar
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    Thanks for posting what MND Connect sent you in a PM Sarah.

    I must say I wish they had replied publicly to the question you asked publicly - notwithstanding the fact that their info would undoubtedly be of help to other Forum users, it is not a subject that needs to be hidden

    Cups still need to be inserted and removed, so if you can't manage tampons, cups won't be of use. IDK about the knickers.

    You can ask your GP to measure your FSH levels (blood test) to get an idea if you're nearing menopause - I'd mine checked recently to see if I should continue taking the pill, the results showed I'm not near to stopping having periods.

    Hope you sort something.

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

  8. #8
    Forum Member Terry's Avatar
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    Hi All;

    Yes I agree with Ellie, it's not the most savory of subjects but it defiantly will help others by talking about it.

    If it is to be a taboo subject, then we better get the adverts off of the TV nearly in every advert break.

    Love Terry

  9. #9
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    Hi Sarah

    You can take the Depo shot it, you take in once every 3 months, and it stops you from having periods. You have to have the doctor or nurse give you the injection, but its only once every 3 months. When you stop taking the injection your periods return again. Its a form of birth control for women that don't want to have to take the pill every day, but also stops your menstrual cycle.

    Good luck hope things work out for you.

    CCxox
    .

  10. #10
    Forum Member Terry's Avatar
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    Hi All, again,

    Perhaps we are a bit hard on the Mnda Connect, the person who sent the PM probably had her or his name on their login and maybe younger and felt uncomfortable posting about it.

    I would much prefer for someone to do that than they have a anonymous login.

    Love Terry
    Last edited by Terry; 5th October 2018 at 10:16.

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