So fed up :'(

Iv had endo for 10 years but only got diagnosed in sept last year. I'm now on prostrap injections in prep for a laperoscopy in a few months. I'm getting awful side effects that have caused me to be signed off sick again. Tonight I found out my dad and sister think it's in my head all this pain. How do I make them see how life is for me :-( iv got awful migraines, pain in my legs and back on top of the endo pain. It hurts so much to hear my own family aren't on my side :-( anyone else had people not understand? X x x

2 Replies

  • I am so sorry your family think that about you.. I too have had it until my recent lap (4th) and they seem a little better but I still get these stupid remarks. But now I don't mention anything to anyone except one close friend, plus another very good friend has endo too and we have become close because of it. She has had it for 12 yrs and also had a hysterectomy and still suffering really bad. My close family, friends and b/f have all made 'stupid' comments over the past 3 yrs as these comments prove that they don't know what they are talking about when they say them. Sadly I have now just learned to ignore things people say and find myself just saying yes, yes when they go on. They will never 'get' it so I don't bother. Why bother trying to explain yourself when they are not willing to try and listen. You can always talk to us on here, we all know what you are going through and how you feel. So you know that you have someone always to offload on. X

  • Hi,

    It's not always easy when people around us don't understand what we are going through. Particularly when they are people we would usually rely upon for support (i.e. close family and friends).

    I suppose Endo is a difficult illness in that sense. It is not a particularly well-known or well-understood illness, so lots of people lack information about it. This has lead to quite a few "myths" about Endo - like "pregnancy cures it", or "you can't have it following a hysterectomy". Furthermore, Endo is not a disease that people can SEE. Us women with Endo know we have it, and can even provide evidence (if required) of our diangosis, in the form of medical letters from Consultants, etc. However, the people about us cannot SEE it, and may therefore question whether it truly exists; they may instead think the illness is "psycho-somatic" or "in the head".

    People are difficult and complex creatures. No two are identical - we all have different personalities, different interests, different experiences. Thus, it is hard for somebody else to see things from YOUR perspective. People who do not have Endo, and have had no experience of Endo, possibly find it very difficult to empathise with people who are suffering from it. THEY cannot feel YOUR pain, or YOUR fatigue, or experience any of YOUR other symptoms for THEMSELVES. Alas, EMPATHY is a strange thing. It is something that we may, or may not, be BORN with - but whatever the fact, we clearly also need to keep DEVELOPING it. The latter is evidently linked with experience.

    Sometimes, people may make apparently hurtful comments out of ignorance, or because they truly do not understand. Such comments may be thoughtless, but not necessarily intentionally hurtful. Other people can be genuinely, and deliberately, insensitive. It would make sense to assume that family and friends fall into the first category.

    I admit that I rally can't say what is the best way of coping with people who do not always understand, and who make insensitive comments. Some people manage to just shrug things like this off, trying to ignore the comment - although it is most likely not always easy. Hurtful things said by family and friends are probably more likely to get at us than most, because it is not what we want or expect from those closest to us.

    Sometimes it may help to have people come to appointments with you. My husband attends many of my Endo appointments with me. This helps him not only to understand what is going on, but also gives him a clear idea of the symptoms and treatment I am experiencing. This works for me. I live with my husband, and he is closest to me. It makes sense for him to understand what is going on. It also makes sense for him to have the opportunity to ask questions, and to discuss things from his perspective, because the fact that I have Endo affects him, too. Our family and friends ARE, whether they admit it or not, affected by the fact we have Endo. Sometimes, giving them the chance to come with us to appointments can make them feel more "included" in the experience, and can show them just what we go through. However, NOBODY can be forced to attend appointments with you; and YOU have to decide whether this is what you would like.

    You could keep trying to explain. Again, NOT easy, I know. It may help to print off information about Endo, to show to family and friends. The Endometriosis UK charity (that hosts this Forum) has some good, easy-to-understand leaflets. Also, the following links may help, as they are to sites that try to dispel myths about Endo, and to sites that explain how one woman describes her illness (which cannot be SEEN by others) to other people...


    Don't know if any of this will help - but it was worth a try. Wishing you all the very best. Take care of yourself.


    Elaine Ellis.

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