Back to all discussions

Learning to live with endometriosis

How do I accept the fact that I will live with this disease and everything that comes with it mentally, physically ,emotionally and spiritually? I can’t seem
To accept that this will be my life forever and how to manage it. As I feel doctors aren’t helping me make this feel any easier.

  1. When were you diagnosed? It took me 2.5 full years to accept it, its hard because it changes your whole life and with that being said, all the changes were hard for me but more often than not the changes were not all that bad for my life overall: new diet, more exercise, more supplements, listening to my body, learning to say no, advocating for yourself etc.. It was really more that I felt damaged and like I couldn't have any joy and felt like everything wouldn't look the way I wanted or dreamed for myself. But you learn to find joy in ways no one else except someone struggling with a chronic pain disorder can get and your life will look different but that do not mean it will be bad. Plus whose life goes to plan anyway?

    1. *does not

    2. just wanted to say thank you so much for sharing this <3 It certainly does change our whole lives. But I try to think of the positive changes. And I really love the ones you listed, new diet, exercise, listening to your body, being an advocate. I know for a fact if didn't have endo, those are all things I would not have probably done or made changes to. It does take time and everyone is different, in accepting this illness. Some may never accept it. But it is so important to try to think of the positives. We may have this illness, but this illness will not have us! Sending big hugs. -Kimberli (team member)

  2. Hello ,

    I really feel you. I have wondered the same, time and again. I always think about this when I am struggling, as the darkest times make me forget that I do get breaks, that certain habits/practices/medication do make me feel better. That while I may not get a cure, I just have to find what works for me. One thing to do is know that the bad times won’t last forever, that we won’t be forever in pain or suffering. It takes a while to find what works and what doesn’t, but it is a journey we have to do, mostly by ourselves, to find our own way of life. Things do get easier.

    I can assure you many in this community share your feelings. We have been there, we will be there, it comes and goes, but you are not alone. – Jessie (team member)

    1. , I know that feeling all too well. For the first year of my diagnosis, I felt that way. And on the very hard days, that thought always comes up too. But, I am learning that no matter how much this illness will try to rule me, I fight daily not to let it. Some days it can be a hard choice to fight. But I have to. I try to think of the positives that have come from endometriosis. Since my diagnosis, it certainly has led me down a path I never thought of. Kind of like Lilly said, it led me down a healthier path of a new diet and exercise. It led me down a path of meeting so many strong warriors who have turned into some of the best of friends. It has led me to see just how strong and resilient I am, even on the days I do break. I certainly never dreamed of living with pain or some sort of illness that is for sure, but I still try to find the good as much as I can. The best part, is knowing I am not on this journey alone. And I hope you know you are not alone too. We are all in this together. It may take time, and you may never fully accept the fact of living with this disease, but you will start to find things that help you get through it, a little bit each day. And anytime you need to talk or even vent, we are all here for you. This entire community. So reach out anytime <3 Sending you such big hugs. -Kimberli (team member)

      or create an account to reply.