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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 can’t find anything at all on the subject? Please could you post the link.
    Many thanks
    Sarah

    #2
    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 Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Have you had any side effects from that Ellie? I might well consider doing something like that but I’m loathe to do anything medical if i can avoid it as I’m 51 and hoping that my periods will stop of their own accord, but I really don’t want anyone doing tampons and stuff for me, so would like to find out what the MNDA has discovered of people’s experiences.
      Thanks for replying. It’s good to know what steps others have taken.
      Sarah x

      Comment


        #4
        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 Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          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”

          Comment


            #6
            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

            Comment


              #7
              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 Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                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
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                Comment


                  #9
                  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

                  Comment


                    #10
                    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; 5 October 2018, 10:16.
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                    Comment


                      #11
                      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

                      Comment


                        #12
                        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
                        MND Connect
                        Contact us on 0808 802 6262 or at [email protected]

                        Comment


                          #13
                          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 Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


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

                            Comment


                              #15
                              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 ‘don’t mess with your hormones’ and ‘pads’! It did all feel a bit 1950s. Thanks to you and others who have responded, I’ll be calling my doctor on Monday! xx

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