Feeling like it's the Endo the road

I have recently been diagnosed (finally!) with Endometriosis and Adenomyosis (was very funny trying to spell that to my 81 yr old mother) and I have felt in despair. I did have an initial buzz when I was diagnosed because it had been so long coming and I had been in so much pain. Got on the interweb and saw so many women who had been through the same as me, and that was more heartening than you can possibly imagine!

I felt so positive once I was diagnosed, but I quickly realised how hard it is. Even knowing what you have, there are no rules. My pain abated for a while, then without rhyme or reason it came back, and I spent the next three days in my bed in and out of pain or doped up on codeine. I couldn't really communicate with anyone. The most horrible thing is that your world becomes so small when you are in pain. I am cancelling calls because I can't face talking to anyone. I am a musician, and I have never not done gigs, even with flu, and last Thursday I had to bow out of the second gig in the last few months because of this illness. This is alien to me. Music heals. But when I am in that much pain I can't do anything. I find it very frightening, how much I am reduced by it. This just isn't me. I feel like this illness is sapping my soul. I am one of the most social souls around (they call me the Queen of Crouch End) but when I am in the midst of this pain I am small and nothing. I don't want to see anyone and even my family. I know I need to get the pain management sorted and I have tried, but so far I am either totally doped out or writhing around. I can't believe something has reduced me so. Help!

2 Replies

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  • Hi,

    I'm awaiting to find out if I have endo, but I can relate to your pain.

    I don't stop. Well in the past...now i've turned into a slow moving creature I never thought I would be. It's kiiling me inside. I want to go back to normal!

    Someone advised me on here to give up my job and that is something i cannot do or come to terms with. The reason is with endo, the fatigue comes along with the pain.

    I was told I had to at least compromise and at first I refused to do this and was greiving for my old life.

    Slowly though, i am coming to terms with to get the most out of my days I have to pace myself even on really good days i have to slow down,so when the pain comes back I've got the energy to deal with it and bounce back quicker. I still end up in bed, just not for as long.

    Also if you feel pain coming on, take analgesia straight away, or even if you kno it's likely to come soon the day before. What meds are you on?

    Wishing you lots of luck on finding a plan that works for you soon xxx

  • Sorry to hear you are both suffering, Endometriosis if a life changing disease, impacts on your life in every way but you are not alone it's estimated there are over 2 million women with it in the UK. Your best route to management of it is to become as educated about it as possible through sites like endometriosis-org.uk and shetrust.org.uk also a change in your eating is essential. A reduction or elimination in dairy/meat/gluten/sugar is essential as all are thought to encourage endometriosis with an increase in fruit/vegetable/fibre/oily fish/nuts/seeds alongside gentle exercise. I am a sufferer too and can say that this is the only thing that has worked for my pain control. If you are on Twitter connect with other sufferers in a friendly/positive way using #endosisters - don't let endo take control of you!

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