New Facebook Group

Some of you will recall that I mentioned starting a new Endo Support Facebook group a few months ago. I was busy creating files when I became unwell at the beginning of May until the end of August during which I have been rendered pretty useless. I am now able to get back to it and have been building the files section but have been temporarily blocked from uploading any more as apparently there is a limit to how many can be put on in a given time scale. This is hugely frustrating!!

I will be putting the posts I have on here on there as files and many more besides. I will be very happy for anyone to keep referring members here to those posts on Endo UK and to the new group.

We will be able to discuss consultants/surgeons openly and consolidate a collective approach to registering complaints against those failing in their duties through the appropriate channels. This is greatly needed.

Since I have been brought to an abrupt halt I am giving the link to the new group for anyone who may want to join since I am now chomping at the bit to get started! Bear with me as you will see loads of files go on when the temporary block is lifted and it might take a while to get discussions and advice fully up and running but you can talk among yourselves in the meantime! Please take care to read the welcome post in full and the 'description' to the right since this contains the group rules. The group is called 'EndoRevisted' which I hope will prove to be aptly named.

facebook.com/groups/1148144...

Many apologies to those awaiting replies to messages but I will get into it now.

16 Replies

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  • Thank you for all your hard work on creating this. I've sent a request to join. It'll be great to not feel so isolated suffering with such a horrible illness!

  • Good luck and thank you. Hope you're feeling a little better Lindle.

  • Thanks lindle do shout if you need any help x

  • Thank you Lindle for all your help and support, much appreciated. I hope you feel better soon.

    If you need anything let us all know and we will help you out.

    Sweety.

  • Hi Linda. Have sent a request to join. Thank you for your continuing hard work.

  • Hi y'all n I want want to know what can make u not have pms ( I fix)

  • I am sure this is a great initiative, but since I don't do Facebook, I will remain here.

  • Yeah same I'm afraid what a shame x

  • But why not join? I don't use FB for anything else - it drives me mad. But there will be such valuable info on there.

  • Hi lindle,

    For me I love the anonymity on here and I think Facebook would make me anxious.you aren't leaving us on here are you? X

  • You can be anonymous on FB. I think you will have to register in your proper name then can change it a certain number of times. So you can be under a nick name of your choice.

    I don't expect to be as active on here as I there is a lot of incorrect info posted with no admin moderation and I find it hard to reconcile this with the fact that it is recommended by the NHS. I had an interesting conversation with Health Unlocked yesterday after seeing in their T and Cs that information must be 'reliable'. They advised that they know there is a lot of inaccurate info posted which is why the recommend people go to their doctors. In the case of endo we know that to be pretty hopeless most of the time and a major source of misinformation in itself.

    I have done my best to try and ensure that info on here is accurate as have many other members but it seems to be getting a fairly hopeless task and you can spent so much time on that rather that the real issue of giving sound guidance. Members can sometimes be hostile too when they feel they are being challenged.

    I have been accused by a member of acting as if I am in control on here (which has never been my intention) and of having no qualification to give advice. I would really rather be 'allowed' to give guidance and can only do that from a place that I have set up myself. I will be leaving the posts on here for reference and will no doubt pop in and out but I have so many files to set up on the group that it is likely to take most of my time, especially in the short term.

    I really hope you will join.

  • Thanks for the info I will definatly think about it, you have provided such helpful research posts on here. I also have some news I tried contacting my consultant 3 alternative ways with no reply but now have a pre op appointment and op date .x

  • Hi Lindle

    I hope you are very much on the mend now. Thank you for this

    Donna

  • Sounds fab. Can you confirm if it is a closed group? I am members of other closed groups e.g infertility support uk and a Cornwall endo support group, which means it doesn't show as one of your groups on your Facebook profile to your friends and only the members can see when you comment or write on the page. I don't want everyone I am friends with on Facebook to know I have endo. If it's closed then I will definitely join :-), as these groups are invaluable for advice and support xx

  • Hi Steph -yes it's closed

    Members only.

  • Great :-) I'll join xx

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