Tired/sleepy all the time. Is it in my h... - Endometriosis UK

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Tired/sleepy all the time. Is it in my head?

Jaas1 profile image
36 Replies

Hey ladies,

I am so sleepy all the time even though I'm not in pain and i get plenty of sleep. Is it in my head or does everyone else feel like this? I haven't changed anything lifestyle wise and normally i find it difficult to get to sleep but lately i have been falling asleep so quickly, but I'm not quick to wake up!

I have had endometriosis for about 2 years. Had a laparoscopy about a year ago and went on the evra patch. I was on it for about 1 and a half years and recently came off it and was mediation free for about 4 months and now back on it.

Any similar scenarios? X

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Jaas1
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36 Replies
princessk09 profile image
princessk09

I’m quite tired a lot but I’ve recently changed my lifestyle after starting uni and having to commute an hour there and back everyday.

However before this, I was always tired and my doctors just put it down to endo and hormones. I find I’m more tired around my period. Xx

Jaas1 profile image
Jaas1 in reply to princessk09

When i told my gynocologist this she just looked at me confused like i shouldn't feel tired so now I'm double thinking is it really endo or my head? I work from home and commute an hour once or twice a week but apart from that i work, cook and clean but I'm shattered everyday whether or not Im on my period. Deffo not anemic as well. So fed up i just wish i had energy :(

princessk09 profile image
princessk09 in reply to Jaas1

Have you had your iron levels and b12 checked? I’ve had low b12 in the past which can make you tired xx

Jaas1 profile image
Jaas1 in reply to princessk09

Yes i always keep ontop of my iron as i know it can get low and all my tests come back fine for it. I also take vitamin B tablets daily and have done so for the past 3 months, but generally my bloods always come back fine which is so frustrating but good in a way lol. Boys have it so much easier than girls we have to check up on so many different things lol x

Missy100 profile image
Missy100 in reply to Jaas1

Iron levels can have a lot to do with this - get them checked. It is amazing how much anemia affects a person. It might be worth getting vitamin D checked yoo as I also found this really impacted me as well.

Jaas1 profile image
Jaas1 in reply to Missy100

My iron levels are fine, I always get it checked and it comes back fine every single time lol. I know generally in this country everyone suffers from low vitamin D because of lack of sun so I might increase this and see how it goes. Thank you! Feel like all of our vitamin levels have to constantly be good all the time. Even though were "ill" we may actually be one of the healthiest people in the world with the amount we watch our diet and vitamins! haha x

bunny_mac profile image
bunny_mac

Have you had your vitamin D levels tested? Apparently it's quite common for women with endo to have low vitamin D and that will make you feel exhausted! I got mine tested as I was feeling like you and someone suggested it might be vitamin D, and lo and behold, it was way way lower than it should have been. GP put me on a high dose of supplements and it did help. Do get it tested, though, don't just start taking a supplement, because if it's *really* low the supplement you get in a chemist etc. won't be enough!

Jaas1 profile image
Jaas1 in reply to bunny_mac

Thanks for that! I take vitamin B tablets but not D. I'm wondering whether to just go on a multi-vitamin instead. Best hurry up and sign up to a doctors as I recently moved house! oops lol x

E-ZEE profile image
E-ZEE

Endo make you tired,I am facing the same things,I have endo since 6 yrs and it makes me tired all the time ,I sleep like 12 to 13 hrs in a day without doing any hard work,I had blood test recently but my iron,b12,vitamin d all come normal it just because of hormones .

Jaas1 profile image
Jaas1 in reply to E-ZEE

That's the same with me. My vitamins always come back fine and it's so annoying because I actually wish one was low and that was the reason why i'm feeling like this. When you say hormones...i'm guessing it's because we have more of 1 hormone than the other so the imbalance makes us tired? How do you go about your daily routine if you don't mind me asking? I have recently moved house and I do the cooking, cleaning, shopping etc and work from home. Even though everything I do is home based and I don't really have to travel much, I get so tired to the point where I can't concentrate on my work but I need the money so I push myself as hard as I can but i'm literally unable to focus. It's almost like I have brain fog. Even when I go for a walk or pop into town, I feel like it's all a dream or blurry (nothing wrong with my eyes!) but I feel like i'm there but not there. Have you experienced this or is it just me? x

E-ZEE profile image
E-ZEE in reply to Jaas1

I am studying doing masters but same my concetration is so poor this time, so hard to concentrate,I push myself to do it as well but some times so helpless even feel difficult to go for grocery shopping being very very tired, also I am having terrible migraines so when I have a migraine attack I feel my vision blurry rest of the time not really,I am going for 2nd diagnostic lapro on 29th nov.

Overit15 profile image
Overit15 in reply to Jaas1

Hi ladies i had a hysterectomy in 2016 with ovaries kept then gallbladder buggered up 6 mths later ..! I was always tired am on vitamin b12 injections now thoses levels are fine still tired sore bones sore eyes brain fog so i seen a heamotoligist who did bloods checked hormones turns out i have a prolactinoma ( tumor on pituitary gland) awaiting to see endocrinologist...! So get your hormone levels checked if one is out just alittle bit wow it makes a difference ...!

Jaas1 profile image
Jaas1 in reply to Overit15

Wow thanks so much for that! So was it your tumor which was making you tired all the time? And is there a cure for that if you don't mind me asking? I think i'm going to write a list of things I want the doctor to check like bloods, hormones etc. Gosh they're going to love me aren't they haha x

Overit15 profile image
Overit15 in reply to Jaas1

Hi 👋 yeah its either surgery or hormones to shrink it i am always tired and heart palpitations along with other symptoms ask for them to check prolactin level ..! And i cant store vitamin B12 so get injections every 3 mths good luck and let me know how things go with results xx

h_grahh profile image
h_grahh

A common endo symptom is fatigue. When I was really suffering before my laparoscopy, I felt tired all the time, and even fell asleep in class! Since my operation I've been better, but I went through a phase of falling asleep really early at night, going from not tired at all to asleep in minutes. I'm better now, but I do sometimes get days where I'm Tired.

Jaas1 profile image
Jaas1 in reply to h_grahh

Aww bless you I haven't fell asleep anywhere...yet thank god lol. But I am really tired. It almost feels like i'm awake but i'm not at the same time. Even when walking through town I feel like it's a dream. I'm not falling asleep or anything, I just feel like I have a cold every day - those kind of symptoms and my body is achy and tired as well. I'm not sure if I just need to get into a routine of waking up early but I have tried to for a few months and It didn't really work. Also when i'm at work around my colleagues and I need to finish a task really quick, I find that I can do it but then once I have completed it i'm tired. Just weird how I can get the energy when I really need it but It's not there all the time which makes me think is it just in my head? Maybe I just need motivation or something x

h_grahh profile image
h_grahh in reply to Jaas1

That sounds like classic endo fatigue. I still struggle with it now, though I'm not forever falling asleep anymore. I don't think it's in your head, frankly. I burn out really quickly and find that everything can be draining. I'm a uni student and by the time I get back from my lectures I'm utterly exhausted and don't have the energy to do much else. You get used to it, and start to know your limits in order to help yourself out. Try talking to your GP about it if your Gynaecologist isn't helpful :(

Jaas1 profile image
Jaas1 in reply to h_grahh

I burn out the minute I get out of bed! Couldn't you get exemptions or special something (forgot what it's called) because you have endo and it could put you behind others in your work? To be honest I've found no matter how much I go to the doctors they won't completely understand unless they have it themselves and experience it. Now i'm just trying to live a normal life, eat what I want (obviously not always) maintain a reasonably healthy lifestyle and try to laugh it off. At least we have a roof over our heads ey, it could be much worse! Saying that I may as well not have a roof over my head i'm so cold! Time to put the heating up lol x

Kirendo profile image
Kirendo

Hi i have stage 3 endometriosis and also edeno i was very tired and constantly sleeping a few months ago so i went to my doctor we did tests to find out my endometriosis caused me to have a fatty liver disease witch is common in most woman who have endometriosis

Jaas1 profile image
Jaas1 in reply to Kirendo

Hi thanks for your reply. What symptoms apart from fatigue did you get with this If you don't mind me asking? Do you feel like you're awake but you're just not alert? This is really common with me. I'm awake but I feel like i'm walking in a dream and can't snap out of it x

Kirendo profile image
Kirendo in reply to Jaas1

I feel like i am not in my body it feels like i am drained from my own skin i can fall asleep at 10 pm till 7 am then go back to sleep in the afternoon and wake up after at least 5 hours sleeo but then am tired by 9 10 and go sleep it even feels like i have done a full gym session from just eating i also have 3-4 lumps in my back at the bottom of my spine they r fatty lumps that are coming from my liver at first i thought it was my weight but i am only in a size 10 clothes my doctors said it is the endometriosis thats causing it i just dont have the energy to do alot i am on 12 weeks sick note

Jaas1 profile image
Jaas1 in reply to Kirendo

That's exactly how I feel like i'm not in my own body but i'm conscious. Have you tried things such as dandelion tea or things rich in magnesium like avocado, mackerel, figs etc... for your liver?

Kirendo profile image
Kirendo in reply to Jaas1

Yes i have tryed alot of things cutting out bread n greasy foods eating alot of fiber and i eat figs they help a little but not alot i also eat fish and broccoli that helps but also have 1 cup of just hot water a day i have cut out butter as well as thats causing my cholesterol to go high

Jaas1 profile image
Jaas1 in reply to Kirendo

I generally have hot watee in a mug with dilute when I'm cold and i love it! Uhh the things females have to go through ey! Hope u feel better soon xx

Hessyh profile image
Hessyh

Hi Jaas1

Yes I am always tired no matter how much sleep I get. It’s a symptom of endo, how’s your energy levels? Mine are non existent x

Jaas1 profile image
Jaas1

Hey - my energy is actually fine! I can cook clean, work etc my body does get tired when I walk or move around too much and my legs get achy, but if say I need to clean the house all day, I will do it but I will feel the effects later! I have energy some days but other days I don't want to move at all (about 3 times a week which could be either me being lazy or partly because my body aches). More than anything it's just struggling with actually being present and awake. I'm awake but I feel like I have had drowsy medication and i'm battling with it to concentrate. This is almost every day for me and I can't seem to get over it no matter what I do. Vitamins are fine, I will check with D as that may be low but not low enough to feel like this every day. It's almost like i'm looking around my brain processes things slower than my eyes. Nothing wrong with my eyes either. So weird! x

kittykins7 profile image
kittykins7

Hi Jaas.

Could be you need to go on the Candida diet. Check it out online. Loads of info about it. X

Jaas1 profile image
Jaas1 in reply to kittykins7

Thank you for that! When I saw diet I thought NO WAY I love food too much haha but I have read up on it a bit and I don't really have too much sugar etc but I can always replace it with foods that contain less sugar so I have made a shopping list! Also I have heard sea vegetables are so good for you so i'm going to start taking some of this as well. It was interesting to read oral contraception can increase fatigue. I never knew this. I only came back on my evra patch about 5 days ago and even though I suffer from fatigue, I feel worse so maybe my patch could be playing a role in this x

vmagpie profile image
vmagpie

I’m undiagnosed as yet I’m exhausted all the time. I’ve got 3 kids and work in the evenings but I have to have a nap with my little one every day or I can’t function. I’m sure it’s to do with endo. Got my first lap dec 11th so I’ll see what difference it makes if they find/remove anything x

Jaas1 profile image
Jaas1 in reply to vmagpie

I'm scared of taking naps as I feel like I won't wake back up! Horrible feeling isn't it. Then again it's a good excuse to use if you don't want to go out or do housework lol x

asoullessstatic profile image
asoullessstatic

I get this, I’m like exhausted in my soul. I can’t explain it. It’s like I am constantly tired, beyond tired. I don’t know how I’m functioning still but it’s just….it’s a type of tired I can’t explain. We believe I have endo on my bowls (though I’ve been attempting to get a referral for 15 years I’m currently on the wait list for gyno), and I wonder if it’s a combination of less efficient absorption of minerals etc, I know that Vitamin B12 needs to be brought in via diet, in order for you to maintain your iron levels. So you can become anaemia via low B12. However, because Endo can often affect digestion and the GI tract, if you are not absorbing these nutrients, taking supplements isn’t going to help because you’re not going to absorb them either. Ask your doctor to do a round of bloods while you are on your period or at the point in your cycle where you are more tired than others, if you are cyclically anaemic / low in B12 they can offer B12 injections which may be able to help, and will also fix any iron problems derived from malabsorbtion.

princessk09 profile image
princessk09

You do know there’s no cure for endometriosis and I’m pretty sure scientists and researchers would definitely disapprove a priest as a cure haha. I’ve had endometriosis all my teen years and I’m 20 still having issues after surgery and hormone treatments. Also people can still get pregnant with endo it just takes a little longer sometime but probably doesn’t come from a priest.

Jaas1 profile image
Jaas1 in reply to princessk09

Of course i know theres no cure...not quite sure where you learned that i didn't know that? Also not sure what a priest has to do with this but i hope ur having a great day lol

princessk09 profile image
princessk09 in reply to Jaas1

I’m so sorry, a lady has been posting this long essay about a priest curing her endo on everyone’s posts but she must of deleted it or got her account deleted. I was replying to her crazy idea of it but once again I’m so sorry xxx

Jaas1 profile image
Jaas1 in reply to princessk09

Oh dear she needs to be reported

K-Endo profile image
K-Endo

Hey Hun just wanted to say I too am tired all the time. It is extremely disheartening and frustrating because my bloods too come back fine . Iron fine , I’m not anaemic etc etc . I was diagnosed with Endo on Tuesday and after reading other posts / online etc I noticed fatigue was mentioned a lot. Which kind of made me go ‘Ahhhhh’. Perhaps it is just something that comes with having it. But I do really feel you . I get more than enough sleep if not sometimes too much yet I wake up needing some kind of caffeine almost immediately and then I’m yawning my head off from about 10am. I do find exercising helps though and a change in diet but overall I get you 💤 x

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