Tired. All. The. Time.

[foursimplewords]

I think I am asking too much of myself. I'm not diagnosed with confirmed endo but gynae thinks it's over a 50% chance.

Something that really drags me down is how tired I am all the time. I try and sleep 7-8hours a night, I drink 3l of water a day, I eat healthily, try and exercise etc. etc. But I'm just soooooooooooooo tired. I am studying part time alongside my full time job and every essay I've had so far I've needed weeks of extensions. I was supposed to work on one today but all I've managed to do it sit and watch crappy TV. Now I'm feeling more stressed about my deadline but I physically don't have the energy to do it. I also had my specialist appt this past Wednesday, so that took a lot out of me mentally when he said "MRI and surgery".

Rant over

[Catness]

I’m completely with you. I’m

Stage 4 endo and have adenomyosis, Interstitial cystits, fibromyalgia and ME and my worst symptoms are back pain and a fatigue that can’t even be described. In one medical journal I read the consultant compares the fatigue from endo to that experienced by those with the later stages of a terminal illness.

I am also trying to study for my masters. Today I managed to write a ‘mind map’. And that was it 😐 all I could manage and I’m not even working alongside. You have all my empathy and gentle hugs I’m sorry I haven’t got anything constructive to add but hopefully knowing you’re not on your own helps xxx

[foursimplewords in reply to Catness]

sorry to hear you are also struggling. I'm sat on the sofa with my laptop and I've printed my notes off next to me, but that's it lol! I could easily go to bed for the night and it's 6pm, sigh....I'm only 27!

[Catness in reply to foursimplewords]

Yep - I’m also in the 27 club! Living the life of an 80+ year old. It gets very depressing sometimes

[foursimplewords in reply to Catness]

I just want to get my degree finished but part of me feels like I should take a year out until I can get my official diagnosis/surgery out the way

[Catness in reply to foursimplewords]

I’m just talking from personal experience and of course everyone’s different but I have found that surgery (I’ve had 4 laps) has made things worse specifically fatigue. I would advocate for trying to finish if you can as you don’t know how you will feel afterwards and how long it takes you to recover :/ sorry I don’t mean to sound really negative xx

[foursimplewords in reply to Catness]

nooooo ok, thank you for the honesty! xx

[PCollind in reply to foursimplewords]

Am planning to start a book on astrology have it all in my head but it is right there after a month just cant type feel exhausted just sitting seems tiresome at times and I am now post surgery.

[lol2806]

I’m sorry to hear you feel like this. I work full time too and am studying for a distance learning qualification related to my job at home. I’m struggling to be motivated to do the work as I’m tired (I wake up and go to sleep tired and I’m pretty much the same age as you). I’ve started to keep some snacks with me to boost my energy through the day as I flag in the afternoon. The other thing to consider is getting thyroid, iron, vitamin b and d levels checked. X

[foursimplewords in reply to lol2806]

Thanks lovely x I've had my iron and thyroid check and all ok. I take a vitamin b complex supp and vit D supp every day too. Making it through a full week of work and then having to study/write essays is exhausting...normally I could cram it into a few days but now I just don't have the energy. hate this.

[Starry]

Thinking of you. xx

I was diagnosed with stage 4 Rv endo and have developed cfs and fibro since my excision op. It's incredibly difficult for other to understand the depth of fatigue you can experience.

Good luck with your mri and surgery. You're never alone here.

[Rachel1million]

I can really empathise. It’s the tiredness that gets to me most. I’m also doing a masters and working, I agree it’s really tough. I’m a lone parent and on a bad week I feel really guilty about having no energy and not being super Mum!!

I recently did a couch to 5k course and that has really helped. I have had an endo diagnosis for quite a long time and I was in a bit of a vicious circle of being too tired to exercise but then feeling sluggish and the running course has helped a lot with my mood and energy levels.

Good luck with the masters, be kind to yourself you are doing a lot and if extensions make things manageable then that is ok. Take care x

[dawnat]

I too have not been diagnosed yet but my gynocologist thinks there is at least a 50% chance I have endometriosis. I see him again to discuss a lapaoscopy in 2 weeks. I am constantly tired and can easily fall asleep by 8pm after a day at work. I struggle to find the energy to exercise. I used to run 10k but at the moment 1 mile leaves me exhausted. Sending thoughts your way and hope you can get sorted soon. It is so depressing feeling like this

[Ceri1973]

I feel for you... the chronic fatigue is so debilitating. I have had it for a long time, my bloods etc were normal, GP said it was viral! It’s worse than ever now after 4 operations and am awaiting 5th my hysterectomy has to be done in 2 stages. I am a nurse and am currently off work as it’s not just tiredness I get brain fog, memory loss after a day at work I can’t get out of bed. This accompanies chronic fatigue.

Just do what you can and be kind to yourself. People who don’t have endo have no idea what it’s like living no with this disease.

Take care xx

[Agilitina]

I can relate to this.. probably on day a month i wake up feeling average. The rest of the time i feel beaten by a metal pole and extremely drained.

I won't give up though. And neither should you. Don't let it beat you down. I am studying to be a massage therapist. So my day off is doing this on a sunday. Saturdays i try to groom dogs to keep my hand in what im good at and in the wk i am a HCC. Which is mentally exhausting.

I love to dance and i am trying so hard to get back into it but i have a negative subconscious about dance now as each time i try i feel pain and makes me worse.

But i will not give up. No matter how much it beats me down. And how close i get to giving in.

The course is what will lift your spirits when you finish. Little bits at a time and dont be so hard on yourself. You are doing fantastic. Big big love and hugs xxxxx

[Z_tz]

I can relate to all of this. I have had fatigue for around seven years but my other (assumedly) endo-related symptoms (my diagnostic lap is in a few weeks but my gynae is 95% sure I have it) were masked by the pill.

In late 2016/early 2017, my fatigue had become so bad that, at 24, I was signed off work for three months. There were days where I physically didn't have the energy to walk, speak, leave the house etc.

In a desperate attempt to find anything that could help, I came off the pill and, within weeks, experienced abdominal, pelvic, hip and leg pain pretty much every day.

By this point, I'd finally been referred to my consultant, who told me to go back on the pill to manage my pain. Within weeks, my pain became noticeably better but my fatigue got severly worse.

Cut a very long story short (it took some trial and error trial to be sure), I then realised that, although I had bad pain, my fatigue had been slightly better off the pill. I, therefore, came off it and within several (maybe three-four) months, I was feeling a lot less fatigued.

Don't get me wrong, I'm still on a journey. I don't have as much energy as I used to, I get severe bouts of fatigue at ovulation and my period, and my pain is not being managed. I'm lucky that there is a pattern to my symptoms, so, with the help of the Flo app, I can try to work around the bad points of the month. But, for six months or so now, I've been working full-time again, doing vinyasa yoga almost everyday, and seeing my friends.

I'm by no means a GP (and my GP thinks my experience of the pill worsening my fatigue is an odd one) but my consultant didn't seem to think my experience was that unusual and told me to stay off the pill and see how I get on.

With this in mind, I thought I'd share my story, as I'd never have known unless I tried it. Equally, if anyone else has experienced anything like this, I'd be interested to hear your stories!

Hope you ladies all find something that works for you soon. Thinking of you all. This disease is so draining.

[sakura22]

It's brilliant that you are managing to do some exercise and drink lots of water despite your extreme fatigue. Nutritional support and sleep are really important. Try to eat well and definitely get tested for iron and vitamin B deficiency. Magnesium is really important for energy too. Consider supplements. Get as much sleep as you need - listen to your body. Be prepared to let things you don't need really to do in favour of what is really important. Ironing and hoovering can wait but your studies are much more important for your future.

Goodles luck.

[PCollind]

So sorry to hear that. Had stage 4 endo chocolate cysts on ovary had TAH BSO 2 months back. Experienced the fatigue you talk of for 2 years it was like after a night of resting was bone tired in the morning. Am still recovering from surgery as it went over 4 hours extreme weakness now and loss of sensation in the legs. Feel like haven't had a life for ages.

[RMou1982]

I hear you! I had a scan last month and although nothing was really found, consultant was 90% sure this is what I have. I’m exhausted even after 9 hours sleep. No interest in exercise after working all day, headaches and the usual pain is just dragging me down. Putting a brave face on for my son and husband is even more draining. Got a gp appt in 4 weeks (earliest one they had) to discuss treatments. You’re not alone!!