Endo fatigue management advice for very physically active person?

Hello, I'm a new 'recruit'. Turns out I have v severe endo discovered after much pushing doctors to follow up IBS type symptoms and weird fatigue. None of the doctors seem to want to talk about the fatigue side of things, my consultant hasn't even written it in his notes! I am a self employed outdoor personal trainer, and I have a high energy dog. But currently my two main passions in life (sport/exercise and dogs) are being ruined due to this weird feeling of utter fatigue in my legs/arms/torso. I've had a laparoscopy and the IBS symptoms seem to have eased for the time being but I wanted to meet any of you out there who are PTs like me, or very sporty people, or dancers... Someone who can tell me how they are able to overcome the fatigue to meet the daily demands of their life? I'm 37 by the way. Thank you!

18 Replies

  • Not sure if I can tell you how to overcome the fatigue that comes with the many symptoms associated with severe endo and IBS type symptoms. I can tell you though, that a respected endo gyne in a recent talk about the subject disputed that IBS actually existed! He claimed that IBS is a lazy diagnosis by Gp's for what is effectively underlying gyne problems! Endo and adhesions often connected, can affect many internal organs. Scar tissue 'adhesions' can worsen after each op as it forms where there is inflammation which is often the case with endo lesions and invasive surgery causes even more inflammation. Like you I just love walking the dog, infact, it is my favourite thing in the world! I often struggle with pain, stiffness in my pelvis, stomach, hip and low back along with bowel and bladder problems and pain wakes me daily. I do find being upright best as I believe this is because when sitting pelvic/stomach/bowel and bladder are scrunched up and on top of each other hence pinching when I sit. I am woken by pain I am sure when bladder and bowel full which causes nerve pain again, often connected with this condition. Walking is still painful and I ache all over especially in my hip and low back with discomfort in my pelvis plus fatigue but endorphines kick in during exercise too which I am sure helps a bit. What I do is take a painkiller when I am about to go out and have an energy drink and will stop with the dog somewhere pleasant with nice views and sit down on my waterproof jacket when I need to for a few minutes. I try and do circular walks so if I am particularly bad I am never far from the car. Dogs can exercise themselves if you can find an open space or field (away from sheep!) you really don't need to walk miles. The other option which is a last resort is get a professional dog walker on bad days. I can't comment re your profession but a similar method still applies. Maybe do it in stages, rest and keep energy levels up by small healthy snacks and drinks and pain relief where necessary. If you take codeine be aware it constipates and that can really make you feel sluggish and heavy so stool softeners often help.

    There is no magic solution just management, unless you find a brilliant endo surgeon and understanding Gp.

  • Forgot to say that I read somewhere than chronic fatigue syndrome has links to endo in some cases.

  • I understand where you're coming from completely. I used to be very active, I was a scout for 5 years, did dance, swimming and other various things. Three years ago I had to re-home my beloved border collie, Ripley, because at the time I didn't know what was wrong with me or if I'd get any better and it wasn't fair on her not walking her more than once a day for half an hour. She really needed at least a 2 hour walk a day.

    I am a slightly different case as I have two other conditions that also cause fatigue unfortunately. I've had to adjust my life around my tiredness :( If I have a busy day then for the following day I'm exhausted and have to rest for the best part. The pain killers also play a massive part in feeling tired so I try not to take them and have an hour long hot bath before doing anything physical instead. I also use an elastic back support.

    If you're anything like me then when you have a good day, you do way too much and wear yourself out?? I keep being told by friends and family to take it easy and pace myself but it's so hard. Then I end up with a couple of days glued to the sofa and get all depressed because I'm so tired. I really have no answers for you but you are not alone. I live 200m from the sea and 300m from open farmland which I don't even get to enjoy much any more :(

    I have found a slight improvement after starting my tablets (norethisterone) but only a slight one.

    Good luck and I hope we can both find a solution and get back to being active xx

  • Hi, sorry to hear you're so tired. I know it happens a lot. I used to love exercise and dancing but that's endo for you! I've found following the endo diet and supplementing with maca powder has improved my energy levels. Might be worth a try. Kind regards x

  • Hi you sound like me it must be our age!! I'm 37 and suffering exactly the same symptoms as you , indescribable tiredness, aching legs , arms , feel dreadful cant exercise, I am waiting for a partial hysterectomy as I'm sick of feeling so ill it's my last hope, doctors don't seem to accept our symptoms as endo but my prof at gynae on weds said symptoms could be endo so who knows, I am off work but did think my symptoms could be something else but now I'm wondering is it endo? Good luck !!!

  • How did you go after your Hysterectomy?

  • Hi you sound like me it must be our age!! I'm 37 and suffering exactly the same symptoms as you , indescribable tiredness, aching legs , arms , feel dreadful cant exercise, I am waiting for a partial hysterectomy as I'm sick of feeling so ill it's my last hope, doctors don't seem to accept our symptoms as endo but my prof at gynae on weds said symptoms could be endo so who knows, I am off work but did think my symptoms could be something else but now I'm wondering is it endo? Good luck !!!

  • when I was 29 the endometriosis brought me to a halt - exhaustion and pain. I trained as a dancer and although not dancing professionally was still very active. The worst probably lasted a year. By the time I was 34 I had a time of two years where I was very active again, doing body work. Unfortuately another dip after that but at 39-40 it was good after that then psoriatic arthritis took over. Now it is suggested that my exhaustion - more than "just" fatigue might have its source in endometriosis.

    I hope you can find advice to help you through this - it's really hard to accept loss of physical function when you are very active. Buddhist dharma talks have helped a bit [audiodharma.org] but they won't help the dog! Talk to other people as you are doing here, find out about medication and diet. Try giving up wheat and sugar - if you haven't

  • Hey ho!

    I'm a lifeguard and train kids in lifesaving and have severe endo and adhesions. The pain saps all my energy and adhesions are now making everyday mobility really difficult so I totally understand where you're coming from. There's a few stop gap solutions I can offer but what you really need is to have an endo specialist remove your endo from your body with excision surgery. During your last lap did your gynae use thermal ablation or diathermy to burn off the disease? This can give temporary relief but endo is an invasive disease and can invade organd up to 3mm and the only way to properly remove it is to cut it out. Most gynaes don't do this because they are not trained. You need a true specialist! So I recommend you push for a referral. But while you wait...

    1) Do try the endo diet, it really works. It's essentially not eating meat, wheat, dairy, soya, sugar or caffeine. Check out this site it tells you all about it endo-resolved.com/diet.html. A good book is Recipes for the Endometriosis Diet by Carolyn Levell. The recipies are ok and easy to manipulate to suit you but she clearly explains the reasoning behind why not to eat these foods. Also avoid chicken that's not organic because it's pumped full of hormones which ain't good for endo!

    2) It sounds simple but Stay warm! I know you work outdoors so make sure to wrap up warm! Also try and eat hot foods as they keep your insides warm. Soup and porridge are staples in my diet. When at home use a heat pad or hot water bottle on your sore tummy. When out I really really recommend Cura-Heat Period Pain heat patches. You stick them on the front of your pants and they last 8hrs+! I couldn't manage without them.

    3) Rest whenever and wherever you can. I know you're active but try take the time to rest and relax. Your body is hurting and needs time to recover. Have a cup of tea and a nice sit down.

    Hope this helps xx

  • Thanks I suffer from fatigue too and this sounds like good advice

  • I have tried taking seven seas for energy and their vit d it has helped a lot .

  • Hi there, I am 30 and until about 6 months ago loved hillwalking, swimming and generally walks in the great outdoors. I am also a secondary school teachet so on my feet all day. I know exactly where ur coming from it is so ftustrating to feel like you can't do the things you ised to. I have been signed off work for quite a few weeks now and o erall thete is a very slight improvement in my energy. Would agree withe comment about the heat pads. The period pain o es are great as are the ones for the back. I also noticed that they do them for knees and wrists - haven't tried those but it might help you? Also painkillers, as others have said they can make you tired although I tend to find ibuprofen doesn't tire me out as much as something like codeine although sometimes takes a few doses to kick in. I hope you can find a solution that works for you. I would love to have a dog but the way I feel at the moment it wouldn't be fair. Good luck and hope ur having a pain free day. xxx

  • Forgot to say am also taking multivits and they do help a little

  • hello

    I think fatigue and pain during exercise is quite common to us endo-sufferers.

    I remember I had to stop doing aqua gym because of the pain and I couldn't keep up with the bunch of grannies exercising with me (I was 28). I tried yoga and it helped to exercise without feeling pain.

    Now I'm on Cerazet and pain is gone but fatigue is still here. I go tango dancing but still can't deal with more than an hour while all the other ladies, who are at least 15 years older than me, can go on for much longer with much more energy.

    I just started taking ginseng pills, it seems to help.

    But I guess there is no absolute solution. Try to slow down and adjust to your new limits. :(

  • Girls,

    Thank you so so much for your fantastic responses and information. I've found it really cheering. I'm a pretty optimistic person but this stuff really gets you down from time to time hey! Thank you for offering your advice so readily.

    So, it looks like I have Recto-Vaginal Endo and my bowel is stuck to my uterus (so many 'interesting' words in one sentence!). During my lap the consultant freed up my stuck down ovaries but afterwards was unspecific about the RVE and said he didn't laser anything due to it being 'too red' (?!). He has been less than helpful actually and I realise he is a gynae who does laparoscopies but maybe is not expert enough to deal with severe endo particularly where the bowel is concerned.

    I now understand that laser ablation is fairly pointless anyway so I'm on a quest to find an endo specialist who is familiar with RVE and bowel. Would anyone recommend? (maybe I'll post this as a separate query, I'm new to forums!).

    Oh, by the way, in case it helps someone, I've been told I also suffer from candida in my gut. This is from an alternative therapist so no scientific back up however I've read that endo and candida can go hand in hand so my diet is already strict to try to get rid of that. I'll happily check out the Endo diet, I wonder if it is similar?


  • Funnily enough I've just given up dairy and bread for the candida reason and because I'm intolerant of dairy. Mght be worth getting a coeliacs test at the GP and an intolerance test off someone like yorktest to see if eliminating certain foods might help. Second Vit d too and get out everyday if you can for a short walk because sometimes just being inactive makes you feel even more tired if that's possible. A couple of short walks every day if you can for your dog?. Also if you can avoid caffiene. Easier said than done, but now I type it I realise I must do this because I always feel better when I get that monkey off my back :-)

  • To Chiligirl...my story is rather similar. I used to go out on my paddle board for up to 6 hours/day along with doing yoga on my board. Energy was never a problem for me. In June 2017, I had laparoscopic surgery for a cyst & they found endometriosis. Prior to that I was diagnosed with ibs, so already knew that existed. It is now September, I was originally put on bc pills to supposedly "help" with symptoms of endo however, I have been bleeding/spotting every day for the past 3 months, have been in severe pain daily, I sweat a lot, and have absolutely no energy. I did not go out on the lake 1 single day this summer.

    I have read about "endo-fatigue" and to me it makes perfect sense & is exactly what I am experiencing however, when I brought it up to my doctor he said he didn't know anything about that & I should see my family doc about chronic fatigue syndrome.... so, that's exactly what I did. Before we jumped to chronic fatigue I had blood test done for Lyme disease, thyroid & mono. All came out negative. So now, 2 doctors have completely written that off. As if I'm imagining it. I am still searching for an answer & won't stop until I find one. Due to chronic pain in my stomach & my back, I recently decided to go to UofM (luckily, I live close to Ann Arbor). I have had an MRI done to see if there is endo affecting my back & ...almost forgot to mention that I was shown the photos of my surgery & there was a significant chocolate cyst on my right ovary that the doctor did not remove....which is blowing my mind! I could go on & on about that but need to sum this up. You are not the only one with fatigue! If your doctors or doctors are not listening, keep searching! There are endo-specialists worth talking to. You mentioned you are 37, I am 39, & we are definitely too young to have severe fatigue.

    I wish you the best of luck! Don't give up. Switch docs until you find one who will listen.

  • ANYBODY HEAR OF ENDO-FATIGUE? ...or is it just one of those symptoms that automatically comes with endometriosis? As if dealing with this disease isn't rough enough, it's even worse when doctors and family members do not listen when you express what you are going through. The doctor who originally diagnosed my endo & removed it told me that if I was having bowel problems to go to a GI doctor. I had already been, & had told her prior to surgery that I have ibs, hoping she would check my colon. ...she apparently did not do that. At a follow up aptmnt. with her I asked why I was sweating so much. Her reply was that she had no idea. Apparently, it's a simple hormone thing. ...and the kicker is when I saw my surgery photos & recognized a decent sized chocolate cyst on my right ovary. I could be wrong but so far I have read that choc cysts do not go away on their own like other cysts & they can cause severe abdominal & back pain. Also read that the only way to treat them is to suppress or inhibit the estrogen it gets or have it removed medically.

    SO... I have not yet had a chance to address this with her but I really do not understand why it was not removed when she was already removing as much endo as she could find.

    Does anyone have choc cysts that have been acknowledged & just left in place to possibly grow?

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