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Endometriosis UK
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Not sleeping

Does anybody else have trouble sleeping because of the pain of endometriosis then I end up in bed for about two days sleeping and in pain its horrible just want to know of anyone else has problems sleeping

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YUp, been awake since half past 4 today. Haven't had pain this bad since before my surgery for Endo last year. Roll on my hysterectomy!!! Got a really busy weekend too as we're having a dinner party today for my best friends birthday and got concert tickets tomoro. Gonna have to fill myslef up with enough pain meds to get me thru it and try not to vomit in the meantime with it all. Great fun... not! xx

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Yes, me too. I have had terrible problems with sleep due to years of endo, ops and now menopausal, it is believed that it is adhesions (scar tissue) pulling on other pelvic organs and related nerve pain causing the pain which wakes me at the magic hour of 4am when my pain medication starts to wane and sleeping tablet wears off. I get right sided pinching deep in my groin which I think maybe my ovary restuck to my bowel. I notice the pain worsens as my bladder and bowel start to fill up as I think as it pulls and puts pressure on adjacent organs/nerve pain when full. I also get worsening low back pain and hip pain at the same time. It drives me nuts, as I never ever get a lie in as I am forced to keep emptying my bladder and ultimately my bowel to attempt to relieve the agonising pain. It still hurts afterwards but a tiny bit less. I usually either have to get up or take more pain relief to sleep on. Sound familiar?

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I have exactly the same story as you, even the pain on my right side. I went to A&E this week as it was so bad I couldn't stand up, sit down or lie on my side without stabbing pain. I was told it wasn't life threatening and sent home. I'm at my wits end - no one will do anything as I'm too complicated. I've been offered a pelvic clearance but the risks are too high

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A&E are a joke they know nothing about endometriosis and fob you off ive had enough of it

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Yes no sleep and sweating is bad too! I'm having to wash my sheets every day ATM!

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I was just thinking how long can you exist on 4-6 hours sleep a night?! Feel like a zombie this morning. Was put on prostap last month and pain settled loads but the insomnia, sweats and weird dreams are the trade off. I wish you could store up sleep from good days to share out on the bad ones! See lack of sleep is even starting to make me go slightly mad...! Good luck with getting the pain under control ladies Xx

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Hi, I was having problems sleeping due to pain. I had laparoscopy 7 month ago and endo was removed, a 1/3 had to be left behind as it was too close to my bladder and bowel, the pain has never got any easier. I am now sleeping tho with the help of amitriptyline 50mg, I started on 25mg but it wasn't enough, been taking these for 7 nights and have slept so much better. Hope this helps x

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be warned i've been using amitriptyline for a long time well a few months and what i find is it makes me very fatigued. i think its cos i feel less pain in the day so i do more and so wear myself out and end up with chronic fatigue that then means i spend my days off work in bed till 2 and when i do get up dont even bother getting dressed.

it definitely helps with sleep so you would think exhaustion would be a silly side effect but ive had to lower my dose right back down to 10 to 20mg and still the chronic fatigue has crept back. maybe its just me though.

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Hi. I am also having sleep problems as well as waking up with hot sweats, which then means extreme tiredness and feeling low and moody! I'm seeing another specialist later this month regarding treatment, which I feel will be injections but extremely concerned. It does help though seeing I'm not the only one......if you see what I mean!

x

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Hey everyone thank you for the comments ive had no sleep last night due to pain so am exhausted now day in bed for me today as I was in A&E yesterday with the pain, at least am not the only one not sleeping due to endometriosis, sleep is going to be my plan for today!

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Oh yes unfortunately no sleeping due to pain , waking up because of the pain .... Sleepless nights ... Take care xx

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I have same problem cant sleep but im exhausted then its like my body shuts down for a couple of days and all i can do is sleep and when i do wake up is take painkillers to try block out the pain. Its some cycle my body has decided works, pain no sleep then almost like someone flicks a switch for sleep and i crash out but do get woken by the pains so painkillers needed still

xxx

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Hi Ladies. I find taking Me lot on in, even starting with a low dose, really helps give me a good nights rest. Try it out and good luck :)

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I have a really bad time sleeping because of pain and then when I do sleep It's for a long time. I'm always tired whether I've slept or not, It's a total pain.

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