Facebook page or person with extensive endo info and support?

[Vincentcat]

Hi there

I was reading through a post the other day and someone mentioned a page or specific person on Facebook who has a lot of information and support about endo and I was just wondering whoever posted this could you let me know again please? I've trolled through the posts on here but can't find it anywhere...

Thanks in advance xxx

[kee_jd]

Nancy’s Nook Endometriosis Education x

[Vincentcat in reply to kee_jd]

Thanks so much. I don't have Facebook, would I still be able to access it or would I need to go on my husband's Facebook? Xx

[kee_jd in reply to Vincentcat]

You need a Facebook account to join, so yeah, I guess you could use your husband’s. h_grahh below is right though - it is very much education and info focused, not a support group as such. It has like 50,000 members or something!

For support, try the Endometriosis UK site - there are listings for support groups all round the country.

Wish you all the best 😊 x

[Vincentcat in reply to kee_jd]

Many thanks x

[h_grahh]

Nancy's nook is very much information but it's not a support page. There are very strict rules and no real conversation on the page. The files are useful, though.

[Vincentcat in reply to h_grahh]

Thank you for your reply h_grahh. How do you mean strict rules? Is it information from trusted sources? X

[h_grahh in reply to Vincentcat]

You're not allowed to post questions until a week after joining, and they expect you to have read a lot of the files before posting to educate yourself. Most posts have the comments turned off as they don't want it become a discussion page. From the files I've read most of the stuff they post are medical journals so good sources, but you've always got to evaluate the source. I think both here and Nancy's Nook are useful, just used in the right way. If you're thinking it's going to be the same sort of support system as here then unfortuately that's not the case. Very useful info, and whilst they have a list of surgeons it's very limited for the UK. The only thing they can really say to help you out it 'you have to travel for the specialist' which is true to an extent but if I'm going to have surgery frankly I don't want to be travelling all the way up to Birmingham from where I am near london!

[Vincentcat in reply to h_grahh]

Oh I see. Thanks for that info. It seems that Nancys Nook is similar to another Facebook page with endo info so don't worry i don't expect it to be like here. I like to read a lot about this disease so I know what I'm talking about and equally what my consultant is talking about at our appointments. I'll find it helpful to have info from credible sources.

I understand your frustration about travelling for the right surgeon. It's so difficult because of course we want the best care and the surgery that will be the most successful but that's no good if it's not convenient.

Do you know if we'd have a longer wait for a surgeon that's not in our area, as they may give priority to local patients? X

[h_grahh in reply to Vincentcat]

I'm worried I've been too negative! They're really useful files on a wide variety of things, from thoracic endo to adenomyosis. The community seems knowledgeable, and there are a couple of American doctors in the group too I think.

I'm not sure. I'm from Sussex and my consultant is in Kent, but I'm lucky enough to be able to see him on private insurance, so I don't have to wait, and I'm currently not at the point where another surgery is indicated (when I see him again in 6 months time perhaps things will seem different). I imagine it would depend on the NHS trust in the area, and the consultant's waiting list.

[Vincentcat]

Thanks a lot for this information, I'm very grateful xx