No so obvious symptoms of endo

A friend of mine who has endo were talking last night about out symptoms and were saying we are both prone to coldsaws. At the moment we both have them on our eyelids ( we only talk on fb so haven't caught them from one another) and we didn't know anyone else who got them like this. We put it down to our low immune systems. I dared to go out two nights in a row this weekend so my body is paying for it now. Face like cyclopse and feeling exhausted. I bet that's painted a pretty picture for you ha ha. Got is wondering what unusual symptoms other people have that might/might not be linked to endo? Or if anyone else gets these lovely swollen cornflakes of their face?!

13 Replies

  • Sorry for typos! Hard to type with one eye open! Good job I can see ( or not see) the funny side of it!

  • Hello! So sorry to hear you and your friend are feeling so bad!

    I don't get coldsores, but I frequently get mouth ulcers, which are very painful. I get joint ache (especially wrists, hips and knees) and I am very prone to chest, sinus and eye infections. Ever since getting my periods I've been very ill and feel so rundown. My doctor was shocked that I'm not anaemic.

    I always feel like I'm hungover or been out all night, and I never am. I have dark eye circles and I am underweight and always cold. I can't stay up past 10.30, I am just exhausted. I feel like I've been partying all week long, and that is not the case!

    On top of that I get low blood sugars occasionally (they can go very low!) and low blood pressure, and weird migraines with aura. Such vague and seemingly unrelated symptoms.

    I think endo can manifest in lots of ways. My gyno said the body is profoundly fatigued as its constantly in pain, even if we ourselves are not aware of it always. He said this has affects our sleep and makes the body constantly tired, which causes lots of things.

    I hope you are feeling better soon! Maybe time for a holiday, or just a long weekend off?? xx

  • These are pretty much all of my symptoms, sorry but its nice to know that someone else has them as I've previously mentioned my symptoms and its very rare to find someone with exactly the same as me! Mouth Ulcers are definitely common with me, just as i get over one or two, a few more pop up!

    My gp also thought i was anaemic, but low and behold I'm not!

    Endo does seem to affect us in many different and strange ways!



  • I thought I was going mad with how I feel. I relieved I'm not ( although obv not happy others are in pain too). I am constantly feeling hungover and spaced out. If I have a late night I pay for it all week feeling achey and exhausted. I don't stay up past 10:30 either because I'm so tired. I get really bad headaches and mirgrains too. I was worried I was getting ME but seems like it's the usual endo symptoms. Not forgetting my ibs symptoms and pain when I need a wee. Such fun!

  • Dear Hells83bells,

    I do feel for you. The cold sores sound most uncomfortable. Is your GP/pharmacist treating it?

    I am sending you the following link as I note you refer to immunity issues in your post and there is an interesting article in it:

    Take care,


  • Thank you simonetta. I'll have a read of that over my coffee. I have a doctors appointment this afternoon. I usually put Zovirax on it but not cutting it this time. Looking a little like Cyclope at the mo! Fit!

  • Good luck!

    I wish you well.

    Take care,


  • I used to get lots of coldsores on corners of my mouth, never thought It might be linked! HOwever, I got interested in aromatherapy and found that putting a tiny dab of geranium oil on the area as soon as it starts to get that weird coldsore tingle, stops them developing - I havent had one for ages since using this treatment. I'm not sure if it would be ok to use on your eyelids, but you may be able to research it online.

  • Thank you Charlie that's a great help. I'll def try that X

  • I have problems with cold sores and fatigue - I often feel washed out. Good drinks to try are the vitamin drinks called Glaceu (if apt properly) they have loadsa different flavours- raspberry apple, fruit punch, lemonade, orange, citrus guava, dragon fruit. Sainsbury so the. Offset range and they're often two for £2 there. On these drinks I notice an improvement. I also have had to take an L-Lysine tablet from holland and Barrett which they say is backed up well with vitamin c. Apparently cold sores come from a lack of certIn amino acids and L-Lysine helps with this. I swear by them they are absolutely fab. Been on them since I was 15!

    Hope this might help xxx

  • Amazing davina! Thank u so much for these details of u things that helped u. I'll be heading my nearest Holland and Barrett torrownto stock up!!!! X

  • I suffer with embo and cold sores on my nose both are worse after a night out still feel cribbed with my embo following New Years celebration no more drinking for me from now on definitely makes both problems worse.

  • I'm the same Caroline, if u have a drink the next or two tummy kills and usually feel exhausted for the whole following week. I don't think other people who haven't been through it understand the far reaching impact it has on your life and health x

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