The fatigue of endometriosis

Hi everyone! Some days I wonder will it ever get better? The fatigue I experience with endometriosis just always seems to be lingering. For example two days ago, the energy it took to move my whole body was enormous and feeling like this after 8-9 hours sleep surely isn’t normal?! My fatigue (that I am blaming endometriosis for) has been plaguing me for the past three years. My pain has been constant for the past four years and it baffles me as alot of time the fatigue is the thing that is upsetting me. I kind of have gotten to grips with the daily pain, whether it be just a twinge even few hours or close your eyes pain till it’s passed! I know what takes the fatigue away – basically putting my body through the menopause countless times has proven that hormones and me just drain my energy levels but lately I am don’t know what to do to tackle the fatigue as I am now back to my monthly cycle? (Any suggestions would be welcome).

All I know is that you need to be strong especially for me when all some doctors do is tell me I don’t have endometriosis! This in itself is confusing when it has been diagnosed and removed twice but guess that is a separate blog in itself as there are not enough words for me to vent my upset at this?

In the meantime, I will just have to pace myself, realise that there are activities I just can’t do and be good to myself but boy is that difficult. Coping with endometriosis is not nice! xx

7 Replies

  • Hi hun,

    I know what you mean about both your points. I have days where I only wake up to take the kids to and from school, I'm that exhausted. I know it sounds stupid but the more you do the more energy you will produce, I find if I go swimming one day I don't feel as tired the next. I also use energy boosting vitamins which you can ask about at any pharmacy. I think the pain killers we have to take makes us a lot more lethargic too. I know if I take tramadol, co-codamol or even co-dydramol I just feel so heavy and tired I want to collapse!

    On your other point of being told you dont have endo.....I was told I had endo, had it removed in my first lap. Second lap got told initially that I had non-active endo (whatever that means) and an ovary stuck down low in my pelvis but that couldn't be causing my pain :/ Go to the gp after second lap to be told I dont have endo and I just have scarring from an old sti (which I had 5 years before)!!! I had an ultra sound not long ago where tey told me my ovary is in the right place and not stuck anywhere! I'm starting to think they have no idea what they're dong half the time!

    Big hugs hun xxxx

  • Thank you so much for the reasurance that I am not alone! XX

  • hi there:) unfortunately i think it is normal for endo to be so tired all the time. i get it too. especially before and during my period. yesterday i slept all day on and off and all night and for me its been like this since i was 15. im no medical expert to know if you can do anything about it, but ive been to the doctor many times and they told me just make sure you eat well and keep a good sleep pattern. not very helpful really... if you are able to plan around it and know that sometimes you will need more sleep than other times then that might help. sorry cant be more helpful, but you re definitely not alone on this xx

  • I'm the same too, its an endo thing being tired. I constantly feel drained and im full time at work, im just about surviving and all i want to do is go back home and stay in bed or in the sofa.

    The majority of endo publications and investigations say that endo causes fatigue and extreme tiredness. And it make sense since our bodies fight endo all the time and takes up all our energy. (i have to be up after 6 in the morning tomorrow..gosh this is hard!).... x

  • I really know this feeling, some days I do the school run then go back to bed then get up to do the school run again then after my daughters bedtime, 7ish I go back to bed again! I could sleep for days. Someone asked me on the way back from school run the other day if I had got a busy day planned, I didn't know what to say! Then after my period I am fine for a week or so and it all starts again! I have to get so much done on the good days to make up for the bad days. People just don't know what fatigue feels like, I never knew what fatigue felt like, I do now. It's quite normal with endo I am afraid.

    P.s. I am up late tonight because it is a good day, hurray.

  • Fatigue, was the worst symptom to cope with ...

    Some days pulling the wet towels out of the machine would have me in floods of tears, I just didn't have any energy. The fatigue would hit me like I'd walked into a brick wall.

    I really had trouble to explain how bad I felt .... I just knew that I felt like the days were passing me by!

    One thing that has helped me is changing my diet. When I felt really bad I ate for comfort, the wrong foods, which of course didn't help matters. I found a book called "recipes for the Endometriosis Diet" by Carolyn Levatt. It does seem a bit extreme, initially, so I made small changes but now I'm probably 90% eating as per the Diet.

    I had a hysterectomy in April due to severe Endo and cysts, I am terrified of it growing back and am more determined now to try and stick to this way of eating. I have set up a Facebook group called. Endometriosis Diet & Nutrition Support Group. It's a Closed Group so it's all private. If you'd like to join us, come seek us out, the more the merrier!

  • Thanks for all the feedback and advice :-). Felt so bad this morning, I didnt know how I would get through the day but I did! Hugs xx

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