I'm going to apologise in advance as I am just posting to get something off my chest.
I have abdominal wall endo and, while the pain is horrible, I can manage it enough with painkillers to make it bearable. My main, most debilitating symptom is fatigue / brain fog. I swing between having good days where I am feeling really productive and manage to get loads done, and awful days where I physically can't summon the energy to move or speak, and even the thought of having a shower seems like climbing Mount Everest.
In my good days, I have a tendency to try and be superwoman because I am so excited about being a normal, fully functioning human being and as such have ended up volunteering my spare time (I only work part time) to a few local charities / organisations. I tend to regret doing this in my bad days.
Over the last few weeks I have struggled quite a bit so have not been able to help one of my causes as much as I had intended. I have been down there this morning as I feel like I am letting them down (even though when I first offered my services I did mention I had a condition that would sometimes affect my abilities and level of commitment). I apologized for my recent uselessness and opened up a bit about my endo fatigue / brain fog issues. I was met with somebody who has worked on a gynae ward for 30 years, met lots of endo sufferers and has never known that be a side effect. Like I was just being lazy and making excuses.
Now I feel like a right lazy cow (even though I know I can't help it), a bit of a failure, but mostly even more determined to somehow find a way to manage everything in my bad days as well as my good days.
Sorry for the long post, thanks for listening to my rant! Hope you are all doing as well as possible xxx
Written by
MrsWalshy
To view profiles and participate in discussions please or .
I have severe endo and my main symptom is fatigue. I've had it for 4 years and it is so debilitating. I also get really bad back & hip pain and abdominal pain & swelling but like you, I can usually cope with the pain, I the fatigue is so difficult to live with.
The person you spoke to in the endo ward clearly doesn't know enough to be passing advice. Fatigue is a symptom of endo. It can be caused by anemia (low iron) through blood loss if you have heavy bleeding. But you can also have high iron levels caused by a build up of blood in the pelvis from the endo shedding but the body not having a way to get rid of it. I have high iron even though I'm vegan and don't take iron supplements so I'm pretty sure that's what contributes to my fatigue. I actually have very light periods.
Another issue is that endo causes a lot of inflammation, which is like an immune system response, our poor bodies trying to deal with it all. This causes fatigue too. Do you ever feel fluey, like you're coming down with something but then it passes in a few days? I often get that, it feels like my body is just all inflamed and fighting something.
I think endo is seen as a periods and fertility illness but its way more than that.
You have a recognised chronic health condition and I think it's so important to have a lifestyle that will take your illness into account. We all experience the illness differently so it has to be individual to you and your needs. Some people can work full time and be active, some people can't work at all. I tried working full time but the fatigue made it impossible, I reduced to 3 days but it was still too much. I've been off sick since Oct last year and my contract was terminated due to my health. At first I was horrified by all this, I'd worked really hard to get the career I had but then I accepted, it just didn't fit with me. It was slowly destroying me. I've actually only just been diagnosed so I've not had any treatment at all so I do not hope that I may have some improvement but I think I'll always need to be careful about how much I take on. I'm imagining that I'll need to develop a way of working that's flexible, where I can take proper rest days if I need to and can reduce my work if I'm having a flare up.
It's great that you are keen to volunteer etc but it sounds like it's too much. You're not doing good if you're taking away from your own reserves. You'll burn yourself out. It sounds like you're getting into a bit of a habit of 'boom and bust' with your energy, where you do too much on your good days and pay for it and have to recover. It's is really not good for you to over do it this way. Your poor body is dealing with so much already, it needs rest and to be cared for.
Thanks for your reply, I'm sorry to hear how tough you have been having it. You are so right that each individual's needs are different, you have hit the nail on the head with your 'boom and bust' theory, that certainly does describe my life atm!
You seem to be doing a fantastic job of coping and accepting your limitations, I really hope that you find treatments that agree with you and improve your symptoms along your journey xxx
No need to apologise, that's what this forum is for, ranting and getting things off our collective chests to people who understand what the difficulties are...and you're absolutely not being a lazy cow!!
Like you, I cope with the pain without using pain meds, and I'm not on the pill, though I do have a coil which helps with pain management and bleeding (it's actually stopped my periods entirely which I'm grateful for), but I've always had a fairly high pain threshold/tolerance.
I work full time and am active in terms of exercise as i find it helps. However, I do suffer with endo-fatigue. Aside from pain, I think it's the worst symptom endo suffers get because it stops you from doing things that might help, and means you have to take the time to rest otherwise you can't function properly. In terms of both the fatigue and the brain-fog, if you haven't already, I'd suggest trying some dietary changes. I found that being wheat/gluten free really helped with the brain-fog, I discovered this before I had endo, and generally felt better when I did it. Since my diagnosis 2yrs ago, I'm not strictly wheat/gluten free and I've largely gone dairy free (except cheese...I love it too much, and vegan cheese just isn't the same), I don't eat much red meat, I only drink decaff coffee and herbal/fruit tea now, I've never been a big drinker of alcohol, and when I do have some it tends to be spirits, I also try to be careful with sugar and don't drink fizzy drinks. Basically, all the foods that you're told to be careful with for endo are foods that can cause inflammation, or at least don't help it very much, so experiment and see if cutting/reducing your intake of some of them help. For me, being on an amazing nutritional cleansing system has really helped me, as has being careful with my diet. I can also recommend magnesium as a way of helping with fatigue, it helps with muscle recovery and relaxation, which will help you sleep too. Any good health food shop will be able to advise you on the right type to take for you, and will also be able to advise you on some other supplements that might help you.
I agree with weekari, don't let yourself get to the point of burn out. You have to be as careful, if not more so, on your good days as your bad ones. Try not to get too excited when you're feeling good and rush around too much or make yourself too busy. You know the following day will be bad and you'll be really tired, so try to spread things out through the day, give yourself time to get places without having to rush, and don't over do it when you're volunteering for one of your charities.
On your bad days, don't beat yourself up for not doing stuff, if you can't, you can't, there's not much you can do about it, you just have to listen to your body and rest when you need to. Hopefully, if you can manage your good days a little better, you won't feel as exhausted on your bad days and will still be able to function, if at a slightly reduced capacity.
Importantly, and I will say this again, and will say it to anyone with a chronic, long-term condition (or someone who works out a lot)...listen to what your body is telling you. If you feel fatigued, then rest, if you're in pain or ache, then rest, before you break.
Thank you for the advice and support! I also found that exercise helped a lot, I used to go to the gym regularly when I was able, but unfortunately got to the point where I just couldn't manage it. I am hoping to find some yoga vids on you tube and maybe try and go for a run occasionally to build my fitness back up again. I will definitely try to keep active, without doing too much that I reach the point of burnout! x
If you have chronic pain the obvious side effect is going to be fatigue its so hard having illness that isnt visible, so the more we try to get on with stuff the more people think we are 'better'.
So annoying when people dont understand chronic pain its hard enough in our heads how come some days cant hardly get a drink of water then on others can walk a few miles and hoover the house ??? Can be awful in the morning then not as bad in the afternoon, there is no guessing . Well done for volunteering and don't worry what people think and don't get annoyed at people ( not easy) for not understanding they just don't get it, they lucky enough not to have chronic pain , just keep on we just have to work on our self esteem we shouldnt feel like we have to justify anything, like life is a who's the busyiest competition cos it isn't!!!
Feel strong and dont let people get you down You doing brilliant
Thank you! You are so right, I do constantly feel the need to justify why I might not be able to stand up the entire way through my sons' football matches, or why I have fallen asleep in front of the TV at 8pm, or why I have completely buggered up a task at work that I have done every day for the last 20 years or so. This condition certainly is unpredictable! It is like living with two different versions of myself sometimes. I prefer the fun, lively, energetic version ha ha xx
ive been on a rest day for about 10 years now! Im done with the guilt feelings... it is what it is and im no longer what i was...... nope just accepted that i live with in chronic pain condition that makes me so tired the washing up is left in the sink for days at a time.....so tired i make a cup of tea for my dinner.... too tired to even think about crawling to the shop..... too tired to get in a bath...... fed up of cancelling plans...... im like sleeping beauty...... one of these days i may wake up......
I know your feelings I’ve had fatigue and ‘brain fog’ for several years now. I’m on antidepressants as I got myself so low and felt worthless. I regularly get the guilts if I have a day off and hubby comes home & the house is a mess. My husband understands but doesn’t fully get it and I can see he gets frustrated with me. I’m loving the footie seasons as I can go to bed early without him complaining 😁 I promise your not alone and I can hand on heart say I’ve met a lot of ignorant people who think they know better!
We all understand the constant nagging symptoms of this bloody condition and we all desperately what to look as “normal” as possible.
Oh a suggestion - I’m a nurse myself and I advice my chronically ill patients to enjoy the good days BUT don’t go mad as it makes the next few days really tough. Try slowly down a little on your good days as you could be exhausting yourself!
Thank you, I will definitely try to pace myself. Like you, I feel guilty if I can't do all the housework when I'm on a go-slow and I absolutely HATE mess! So I'm in a vicious cycle of frantically cleaning and tidying, then crashing and burning so it all builds up again (I live in a house with a husband and two boys aged six and seven so housework builds up fairly quickly!) xx
Yes I know that one I have a 7 year old girl and between her my hubby & cat it’s never ending & we’re trying to sell the house! I’m so forgetful and muzzy headed it all feels so much.
I struggle to concentrate. My work involves a lot of reading reports and mathematical modelling and while I'm trying to get stuck into something I'll feel my brain start to relax and lose focus every few seconds. I have to mentally grab hold of my brain and force it to focus again, if that makes sense. It's like that constantly, every few seconds through the day, and I'm utterly drained by the end of the day.
No idea if it's in any way connected to my endometriosis, but it's one of many symptoms that started to develop over the couple of years after I came off the pill.
I think fatigue is a fairly well known symptom of endometriosis. Poke that gynae ward person in the eye next time you see them.
Hi, I have just come across your post after completely reaching the end of my tether with exactly the same problems. In fact I have just come back from yet another scan telling me nothing is wrong. I have had a full hysterectomy and yet still get abdominal pain and distention (not IBS), no other bowel problems at all but yet always linked to foggy head, fatigue and flu like symptoms (glands up, sore throat).
This literally happens every every few days for no rhyme or reason and no obvious triggers that I can see. Like you, I go hell for leather on the good days and then come crashing down on the bad, it is so debilitating.
This for me has been going on for years and whilst I am on top of other of previous health challenges (M.E.) this is something that I just cannot seem to get rid of, despite my healthy lifestyle. I have hit a complete roadblock with the medical profession and no idea where to turn to now.
Would love to hear if anyone else experiences anything similar and have managed to get any help from anyone?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
its so hard having illness that isnt visible, so the more we try to get on with stuff the more people think we are 'better'.
Feeling alone - like people just don't understand 
Lap on Monday - what to tell people?
Why don't people understand?
