Endometriosis UK

Anyone here with Endometriosis and Narcolepsy or other sleep disorders?

I have had Endometriosis for 3years (I am 17y/o) and have recently found out I also suffer from Narcolepsy, in the beginning I just figured it was chronic fatigue syndrome due to the body trying to fight off this disease but that wasn't the case. I am wondering whether these two diseases are linked and whether anyone has any suggestions to coping with the constant sleeping. I try to exercise, drink caffeine and eat healthy etc. but nothing helps, I get a good nights rest 8hours, sometimes more but after being awake for an hour I'm drowsy, need to sleep otherwise I get migraines and a bad fever. I sleep for about 15hours including my 6-8hour sleep throughout the night. I am so upset because I can't do what id like to do with my life, I would like to start studying soon but I can't imagine myself being able to concentrate when all I want to do is sleep!

3 Replies

Hi Meganfaithfull, narcolepsy is a rare sleep disorder and I do not feel in any way qualified to comment on it. However, it is useful with any sleep disorder to get into regular habits with going to bed and getting up. Also, winding down at the end of the day, a warm bath, warm drink, soft music for instance.NO caffeine fuelled drinks from late afternoon either. Also, it's not a good idea to be using todays technology such as computers at night.

Exercise is definitely good as it produces endorphins (the body's natural painkiller) but again not too late in the day.

I think you need to plan for your future, and get on with your studying as endometriosis is a lifelong condition you have to learn to live with, otherwise it will consume you and you are still so young.

I wonder if you should keep a symptom diary and then go back to see your doctor to discuss all the issues you have. In my experience you do have to keep re-visiting issues before anything happens and that seems to be the case for a lot of the ladies on this site. x


I suffer from sleep paralysis aswell as having stage 4 severe endo. It can leave me do drained and feeling like I've had no sleep at all. I don't know what it's like to have narcolepsy but I sympathise with you.x


I also suffer with insomnia and have done since I was baby so i feel really weak at times coz I feel completely drained with the endo but cant for the life of me sleep then i can go the total oppersite and all I want todo is sleep, and even if I sleep all day and night I still feel exhausted,


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