Experiences with fatigue?: Hi all, can I... - Endometriosis UK

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Experiences with fatigue?

GSUndiagnosed
GSUndiagnosed
28 Replies

Hi all, can I have your experiences with fatigue with endo? I keep feeling so tired at the weekend. getting up and walking is a struggle.. I feel drained and not able to concentrate or focus at looking at things properly.. I’m worried.. It’s like i’m not in my own body.. A bad description i know.. It first started in November I think and i keep getting the same feeling now and again..

28 Replies
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Amber83

Hi, I have the same. It’s so bad it’s made me really anxious and depressed. I just can’t understand or believe that Endo can cause us to feel like this! I understand the pain and even most of the other symptoms but feeling like my body is sucked of any energy I can’t get my head round x

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GSUndiagnosed

Thank you for your reply 😊 So glad to hear that it’s not just me.. My anxiety has been escalated severely because of this symptom.. My mind is telling me crazy things and i feel like i’m dying which i know is irrational.. What are your other symptoms if you don’t mind me asking? x

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Amber83

Pelvic pain, back pain that goes down my legs, pain when needing a wee, stomach issues, feeling sick, constipation and Diarrhea and the fatigue x

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Honey74
Honey74
in reply to Amber83

Hi there, had same issue. Disordered sleep is a nightmare, affects every brain function. Please read up good sources of info on psychology and biology of sleep - sleep deprivation is the torture method of choice by some regimes because it works to totally decentre you, affecting every function of yr brain. Get informed as a matter of urgency - people often complain you’ll hear, but sleep deprivation is torturous. Best of luck. I took this advice and now my sleep isnt perfect but sleep probs are now much much reduced. Best wishes

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brightbunny

Hey, can completely relate. It's so frustrating isn't it. It's actually got worse for me recently. I work full time, and I'm just left so exhausted by the end of the working day that I don't feel like doing anything after work! I was in and out of sleep Sunday afternoon, where I would wake up and feel like I hadn't slept at all... I read an article about how fatigue is one of the most common symptoms with endo, but one of the most under researched etc. I honestly think I've been complaining about my fatigue for nearly 2 years and doctors haven't really got to the bottom of it! Take care :)

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GSUndiagnosed

Thank you for your reply. Do you mind sending me a link to the article if you remember it? Would be great to read and understand more about it. Take care too x

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brightbunny

Hey :) of course, it was this - independent.co.uk/news/heal...

Hope this helps, found it quite interesting.

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HopeRed

I have definitely been feeling extreme tiredness by the end of the day or waking up feeling like I haven't slept. I often wake up early as I have lower back pain related to the endo I believe. I am also experiencing pain in my bottom and coccyx all new- seeing cons in March.

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Kateth

I saw my consultant a couple of days ago, and he said that 40% of people with endo have chronic fatigue. So it’s really not just you! As for causes - endo is a form of chronic inflammation, which is incredibly draining on the system.

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GSUndiagnosed

That’s helpful to know, thank you x

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Ggmiudd

I had a laparoscopy in December and started the pill in October. Ever since then I feel extremely tired. I used to get away with 5-6 hours of sleep per night, but now I need 8-9 to feel ok, however, in the evening still get really tired.

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Tinks2

Hi, i am Recoverng frm having bilateral ovarian dermoid cysts removed last November. My scar is healing beautifully, but inside my muscles are taking a long time to recover.

Before the op i got to a point where i was so tired i couldn't work any more an d was signed off by the dr. Since the op my legs feel achy and i feel how you described most of the time. I've never loved my bed so much!

It turns out i am vit d3 deficient and my blood counts are low. My liver is far from optimal. (Possibly the effects of the anaesthetic) My dr has given me some vit d tablets. NOT ENOUGH!!! I'd already been taking them for 3 months so it's obviously a bigger problem.

I've been to see a Chinese medicine practitioner who is also trained in western medicine. He has suggested i take A LOT more vit d (x10) and supplements liquid b12, iron, folic acid, magnesium and vit c for my blood and milk thistle for my liver. Also to track my temp to check my thyroid is ok.

You are def not alone with your fatigue. Or with people not understanding. It could be worth checking your vit d levels, or just taking some especially during the winter months. Apparently everyone in the uk is likely to be a bit low in winter.

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GSUndiagnosed

Thank you for sharing your story. I’ll definitely speak to my doctor and check my vit levels just in case. I feel so worried about it, especially when i can have a pain-free week and still have the symptom of fatigue x

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DawnMcG

I feel like this a lot. I've been to my GP but she hasn't offered me anything to help. She checked my iron and thyroid levels and they're OK so it's definitely fatigue. I just have to rest when it hits but definitely feel like I miss out on my own life because of it, which makes me feel depressed. It's a vicious circle.

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GSUndiagnosed

Thank you for your reply. Is your fatique during/after pain or does yours just come on as a single symptom sometimes? Mine doesn’t have any correlation to when i’m in pain. If i’m having a pain-free week I can still get fatigued and feel spaced out. I’ve had my thyroid checked and that’s ok. I’m gonna mention the fatigue to my doctor to check my vit levels. You’re right, it is a vicious circle x

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StefaniaJW

Yes, endometriosis causes chronic fatigue, but the good news is it's something we can tackle. You will have to follow a few steps and then a few rules for a lifetime.

First of all, how serious is your endometriosis? Have you gotten a laparoscopy with an experienced excision surgeon? Are you taking Visanne, Zoladex, birth control?

These pieces of information are vital.

Second of all, when was the last time you had your iron and vitamin D levels checked out? Were they ok? If they were not, have you taken supplements? How were your levels after that? Do you have thyroid issues as well? Do you take anything for that?

Third: how much sleep do you get per night? Is it quality sleep? Are you consistent in going to sleep at the same time everyday and/or never past midnight?

Fourth question: what is your lifestyle like? Do you do a little walk outside everyday? What type of physical activity do you do? What is your diet like? Do you avoid alcohol, fried and processed foods, refined carbs and coffee and go for free-range eggs, omega-3 rich fish, fresh fruit and raw veggies and green tea instead?

Fifth question: do you take any supplements for fatigue as of this day? Most common supplements for fatigue consist in vitamin B6 and B9, (sometimes vitamin B12 is needed as well), vitamin C, magnesium. Selenium and zinc are vital for gut health and work against brain fog and difficulty in concentration. You should take these every single day (I'll tell you the exact dosage for each when you get back at me with your answers).

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GSUndiagnosed

Hi stefania,

Thank you for your reply. My answers are:

- No official endo diagnosis yet, currently waiting for an MRI scan date.. Ultrasounds have come back normal

- I have trialled Microgynon for the last two months but it made me very nauseas so i’ve this week stopped taking it. It didn’t do anything for the pain anyway.

- I haven’t yet had my vitamins checked. I have a doctors appt on Tuesday so i will ask about that then.

- I have had a blood test for thyroid and celiac. Both were fine.

- My sleep pattern is consistent and i go to bed at a reasonable time 10pm usually every night. I sleep for approx 7hrs every night and more at weekends.

- Lifestyle is active (i go to the gym at least 5 times a week) and my diet is relatively good. I don’t drink coffee or alcohol

- I don’t take any supplements currently.

Thanks for your help x

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GSUndiagnosed

Ps I eat a lot of fish and i am drinking at least a cup of green tea a day x

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StefaniaJW

Great! You should definitely wait for an MRI but a good endo gyno can already tell by ultrasound. Then you should definitely discuss the possibility of laparoscopy with an experienced endo excision surgeon.

Let's wait for the blood test to see how your iron and vitamin D levels are (lack of either can cause severe fatigue).

Microgynon is a type of birth control with both oestrogen and progesterone. I cannot believe your gyno prescribed something containing oestrogen considering you have endometriosis, but a progesterone-only pill would have possibly increased the fatigue, so that's maybe why he/she didn't push for that. I would still consider moving to a different gyno considering your doesn't seem an experienced endo gyn.

Sleeping 7 hours per night and working out 5 times a week at the gym (!) can definitely lead to fatigue. I sleep around 8-10 hours per night and only go for a walk everyday.

I could never do the amount of physical exercise you do (that alone tells me you have more energy than you think!).

You should definitely take the supplements I have advised into account.

I cannot suggest my supplements because they are unavailable elsewhere (as far as I know) but I can suggest the dosage I take:

- Magnesium between 300 and 375 mg;

- Vitamin B2/riboflavin 1,4 mg

- Vitamin B6 1,4 mg;

- Vitamin B9/folic acid around 300 mcg is good;

- Vitamin B12 (only if needed): 2,5 mcg;

- Selenium 55 mcg;

- Zinc 10 mg;

- Vitamin C 80 mg.

Pay very much attention to the difference between mcg and mg :)

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Pashax

Hi, I've had terrible fatigue for years since my Endo kicked in (age 13). I used to be in bed for weeks with it!(age 21) The only think that I've found that has actually improved my energy is taking a prescribed Progesterone cream, this has to be prescribed by a private doctor. It's a cream that I take every day. I've had at least a 50% energy increase since using it. I've now moved on 'the pill' but a Progesterone only one and it has REALLY helped me. I'm now able to feel more engaged throughout the day. I will add though that if you take codeine/ Tramadol for the Endo pain, it can cause something called Denationalisation. It can make you feel not ' fully in your self' which is rather stressful ( just a side note) xxx

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GSUndiagnosed

Thank you for your reply and telling me your experience. I think i’m gonna try a progesterone only pill soon as i was on microgynon for 2.5 months and it didn’t help at all with the pain x

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Seahorse48

Hi yes I have had that exhaustion for many years with my endo. Please don't be scared it's like chronic fatigue with the doctors saying it's just anxiety. I have repeatedly said it's physical. I do have anxiety but I knew it was physical. It's a difficult thing and especially when they dont take it seriously.

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GSUndiagnosed

Thank tou for your reply and reassurance x It’s just making me so worried because I haven’t been officially diagnosed with endo yet.. The rational side of me knows that the symptoms are all there and fatigue is part of endo but the irrational side of me is saying i’m basically dying.. I’ve had gyno symptoms for a year pretty much so realistically it can’t be anything fatal but fatigue is a new symptom for me (since November) and it’s freaking me out.. I have just come off the pill a week ago and now on my period so it could be my hormones playing up. I’m exhausted!! I have fatigue during ovulation as well i think x

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Seahorse48

Hi there. You know what I am in my bed as I write this to you. I'm. Utterly exhausted and feel like a bus ran me over. It is sooo common to feel exhausted with endo if that is what you have. And you are in your period just now and have had gynae symptoms for a year. Honestly, your not dying this is common.

Thing is try and be gentle on yourself. Can you drink some camomile tea, try listen nice music, try not to get scared. Because worrying and freaking out with exhaust you further and make you even more drained. I understand as I am a worrier too.i tried to read a book ha ha my brain is all over the place. I have floaters in front of my eyes.

Your in your period, and that can wipe us out. So rest your body and mind as best you can. Make sure you get checked out properly to see if it is endo. And take it easy. You know I wish I could do more.. But I can't. We do what we can do. That's good enough. Take care

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GSUndiagnosed

Thank you for your kind words. They really help. I’m glad to know there are other women in the same boat x x

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Seahorse48

Your welcome. Yes it does help to reach out doesn't it. Take care 🌷

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Jue23

Hi, I feel exactly the same, I was told l had Endo, 11 years ago and had a hysterectomy 5 yrs ago. I’m really struggling at the minute we’ll have been for months and it’s took its toll on me. I went to out of hours 2wks ago l felt so ill. I was told l might have kidney stones, so numerous pain killers and antibiotics and still no better l had a CT scan l had today all is clear so we are back to the drawing board. I didn’t release you could feel this ill with Endo! X

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sakura22

Yes fatigue - mental and physical is a big problem for me too. The following things have helped me a bit - improving my diet - I try to do Dr Greger's Daily Dozen (Google it to learn more.) Supplements: iron, vitamin D, omega 3 and B complex. Regular, gentle exercise like yoga and walking. Resting when I feel really tired eg have an early night and not feeling guilty. (Recommend Paul McKenna's I Can Make You Sleep if insomnia is a problem along with fatigue). Accepting that sometimes I can't keep the house / garden as well as I would like to.

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