What would you want your friends and fam to know about Endo?

[miss_wendy]

I'm compiling a list of things that I feel our loved ones should know about Endo which I'm going to post on my blog for sharing.

What would you like your loved ones to know or understand better?

[tigernat]

The tiredness we feel is real, that I can't help the mood swings, that it's not just women's stuff once a month, I suffer nearly all month either pain or hormonal wise and people those lucky enough not to suffer endo just don't understand xx

[confusedandworried]

That it's not "just period pain", it's not "normal". It is so much more.

That it can be life debilitating pain at any time and sometimes all the time.

That fatigue is so much more than "just feeling tired" - the amount of sleep a sufferer manages to get doesn't always have a bearing on fatigue levels.

That it is not a simple disease, or a fully understood disease or a disease that can be cured.

That Hysterectomy rarely cures endo.

That endo doesn't just effect the reproductive organs. It can affect the bowel, the bladder, the peritoneal lining, the diaphragm, the ureters and although supposedly rare the kidneys, the lungs and even the brain.

That endo does not belong in general gynaecology, particularly because it can affect other areas. It deserves and needs to be taken seriously and should be treated by endo specialists. More research is needed as it shouldn't be accepted that women are often left suffering for years and made to feel like hypochondriacs.

That because is still so poorly understood treatment options are limited and not without risks.

That sadly even the medical professions understanding of endo can be based upon out-dated, antiquated and inaccurate information and myths that still exist today meaning women are not being treated effectively or with empathy.

That this list is sadly not exhaustive.....

[miss_wendy]

Thank you for your help ladies. The post is now up on my blog bumpkinbroke.com/?p=93 xx

[SEB88]

chronic fatigue and how one day i can be fine but the next the polar opposite

[DrWatson]

The tiredness and feeling like I'm getting or recovering from a virus all the time (I'm not!) The fact that for me it's not really about pain (sometimes it is and it used to be more so) but other things like the tiredness, headaches, leg aches. Not being able to tolerate artificial (or my own!) hormones very well. Always worrying it's going to come back or that I'll feel ill if I go out and do something nice.