Endometriosis UK
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Not sleeping 😴

Hi everyone, just wondered if anyone is going through not sleeping like me or any tips they have.

I can’t remember the last time I slept through and felt refreshed. I wake up every night and sometimes It can be 5 times a night. I’ve had to ring in sick today as another bad nights sleep 😩 I think I may have slept for an hr. I’m at the hospital later and hoping they can give me something to help as I have no energy to do every day things and it’s affecting my mood. I’m eating well, I drink chamomile tea b4 bed and even tried Nytol.

Please help xxx

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I have the exact same problem and thought I'd have to learn to live with it. I've done some research and it appears there's an amino acid that helps in the production of sleep hormones that we miss in our modern diet L-Tryptophan. It's missed because over time we've modified things we eat so that they have diluted amounts of vitamins and minerals etc. Grains are a good example of this dilution; we've spent so much time selecting the best qualities to use them that we haven't focussed on their nutritional content hence the need for added vitamins and minerals.

L-Tryptophan is worth looking into; see what you can find out there. It's natural so it will of course take a few weeks to have an effect. I'm on my second week and it's helping; I do have some restful nights.

I've found that I tend to sleep better / get better sleep if I stay awake until I naturally want to fall asleep - about 2am, and then sleep until I'm ready to get up - about 10am. Everyone has a different cycle and that's your circadian rhythm, it's good to get to know what yours is. Advice online is to wait until you have a few days to a week off from any time dependent activities such as work / studies then let your body decide what time it wants to sleep, go to sleep at that time, get out of bed when you feel rested even if you wake a few times. Then plan life around it if it's not too different; like have breakfast when you're fully awake as your metabolism will be better, have dinner at a time so you don't feel too full before sleep or don't snack before sleep. If your work / studies allow you to get in later / earlier check about that - sometimes they are flexible.

Kalms, Nytol etc. don't work I've found as they all seem to help you drift off naturally but I've found the drifting off to be fine, they don't help when you keep waking up during sleep. Taking actual prescribed medications research shows that although they help the body rest, your mind hasn't completely - similar to sedation - so you still feel out of it and unable to focus.

Other stuff: setting phone / tv .to bluelight filter, using warm white lights in the bedroom (blue light stimulates the mind to wake up), only using the bedroom for sleep and if you can't sleep leave the room to find something else to do and come back later, drink fluids no later than an hour before bed to allow time for your bladder to empty, any active exercise should also stop an hour before bed (gym, running etc), short evening walks and yoga are okay.

I'd encourage you to do some research into natural ways of coping / adjusting and hopefully you'll find a way :)

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Hi, thanks for your reply and advice. Yes like yourself I fall to sleep ok it’s the waking up in between. I go to the gym often too, well wen I have the energy. My sleeping hasn’t been good for a few months but it’s gotten worse since I started the injection. I’m on hrt to help with the symptoms but it’s not helping. I visited the hospital yesterday I got to see the doctor and I just cried because I was so tired. He thinks my injection is helping pain wise but my body seems to be rejecting the hrt which should help the insomnia. He’s changed my dose and I’m back in a month. Fingers crossed it helps

Are you having any treatment yourself?

Xxx.

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I actually found sleeping tablets (antihistamines) helpful - the pharmacist recommended them when I mentioned the pain keeping me awake and they do help without making me feel drowsy in the morning too.

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Hi, sleeping tablets is my next option. The hospital has increased my medication yesterday which fingers crossed helps me. I’m not in much pain now, I’ve changed my diet and on the injection but if I can sort the sleeping I’m half way to feeling like the old me. How is your journey going? xxx

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Sleeping tablets do work however they don't solve the problem of why you aren't sleeping well in the first place, they'll give you some time to get back to normal (which is sometimes all someone needs), and advised not to be taken long term due to dependence - they upset your body's balance like any drug taken long term

Doctors won't look into long term effects as they see it that you want an immediate fix. Natural remidies / changes aren't proven to work as they cannot be tested scientifically (sleeping tablets can)

Hey if the tablets work for you that's fine :) I'm not saying don't take them!

I personally prefer the natural methods and finding out the root cause of bodily problems.

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Hi,

I’ve never had a sleeping tablet before. I’m only thinking of taking one just to give me a one off good nights sleep. It’s not something im wanting to take on a regular basis. I’m hoping the medication the hospital has given me yesterday will help. I’m definitely open to other options though. I’m actually thinking of trying reflexology again as it does relax me and the pillow spray snds good. The no sleeping isn’t from pain so I can only put it down to stress and I know it’s a side affect of the injection. Thanks for your advise xxx

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Just speak to the pharmacist about it and let them know what medication you're currently on and what they would advise. Oh god, you don't want to know lol! My journey has been awful lol. I work for the NHS as a midwife but I feel totally let down by them if I'm honest. I wasn't informed I had an abnormal smear until they picked it up 8 months later at my consultant apt for the laparoscopy- it's been repeated and was found to still be abnormal so awaiting a repeat colposcopy. Was told my laparoscopy would be in feb/march but hadn't heard anything, so called up my trust a few days ago, where I was told because of the bed crisis over winter I definitely won't be having surgery in the next 2 months (was referred back in October) and that they couldn't even give me a date - there's that many people ahead of me. I've had almost 2 months off work because of the pain which has been so stressful with job security etc. Still changing my meds to find something which can cover my pain - atm on naproxen and tramadol. Only at the start of my journey with regards to a diagnosis but having had symptoms for a couple of years, I just want to get treatment if a diagnosis is made. How's your journey been?

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But I agree with what other people are saying in that you need to look at the cause of the insomnia so that you best know how to treat - is it anxiety, pain, etc? I was just very anxious and stressed and at the time found they worked best for me than other methods such as calms and lavender sprays. If it's pain it's worthwile going back to the GP.

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Ohh bless you, snds like your havin a rough time. I started with abnormal bleeding in 2012 because my scan was clear they sent me on my way. Over the years my symptoms just got worse. I’ve also had an abnormal smear and I’ve had treatment for that. Last year I went to 4 different departments looking for answers on what’s wrong with me. Finally the gyno said he thought it could be endo but linked to my bowel. The mri scan confirmed this. I’ve since started the injection and changed my diet. I’m great pain wise it’s just the sleep to sort. I have an option of an operation but I’ll need 2 surgeons and a few risks so i haven’t rushed in to it. Sorry to go on - that’s just the short version. I really hope u get sorted soon. I lost count how many doctors appointments I had b4 I got o the right department xxx

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Thanks Swats - can I ask what treatment you had following the abnormal smears? Did they not do a laparoscopy for the endo? To be fair to the GP They were pretty good at putting in the referral to gynaecologist for endo 18 months ago - I know people on here have seen the GP several times / had issues for years before they've got a correct diagnosis. It's just the horrendous waiting times. I'm almost wishing I get a diagnosis of endo so I can get some treatment and sort out the pain. Otherwise will feel like I'm going mad if they don't find anything 😕

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Hi,

I had loop diathermy to treatment my abnormal cells. They referred me straight away for that and my smears have been clear since my treatment. The treatment itself was very quick.

Yeah I’ve been goin back and forth to doctors and hospital for years. But they kept sending me for tests in the wrong departments so results were always clear until my MRI last year. I’ve not had a laparoscopy yet. They have tried me with the injection first. This is because my endo has spread to my bowel and I need the 2 surgeons but I may not get away with the little incisions. I may have to have open surgery with mine and have a bigger cut/scar. Because of this I didn’t want to rush In to the opp, and trying any other options first x

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I’m a terrible sleeper, and sleeping tablets really don’t agree with me so they’ve always been a no go. I’ve been using the ‘This Works Deep Sleep Pillow Spray’. Although it doesn’t keep me sleeping the full way through, it makes me fall asleep much quicker so even when I wake up, it’s not for quite as long now. Obviously it isn’t a miracle worker so doesn’t work every time and isn’t like an immediate click your fingers and you’re asleep type thing, but it’s definitely helping to an extent x

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Oooh I'll have to look up that one!

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Hi, thanks for the advise. Can I ask where u got the pillow spray from? x

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I got mine in boots but they also sell it in m&s and a few online places too like amazon and I think also feelunique x

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Thank you x

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Download the app “calm”.. it’s amazing.

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Thanks I’ve just downloaded ready for 2nite. So fingers crossed x

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Love this app too! x

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