Is it normal to feel this ill from endo?

I was diagnosed with endo a few weeks ago based on my symptoms and I am due to have a laparoscopy on the 18th june. I was just wondering if anyone else felt so ill they had to spend most of their time in bed? I have terrible headaches, fatigue, sickness and I am in pain everyday not just when my period is due like I have read most people have. I am so weak n tired I can't go out, some days I find it impossible to even climb the stairs n have to sleep downstairs. I have a 1 year old and a 2 year old so I am finding this very difficult. I am also scared that maybe the doctors have got it wrong n its something more serious? Is it normal to feel this bad?

17 Replies

  • You might also have chronic fatigue syndrome CFS? Women with endo can often have some other conditions too.

    Some more info on CFS

  • I could have written this myself. I've got my diagnostic lap in a couple of weeks and I feel the same as you do. I've just come on here to make a post about the headaches, nausea, fatigue and sickness. I feel so drained and sick, the headaches are awful :( I have two young children to. Are your headaches one sided and last for days? I've had this one for 3 days now and even after sleep I feel completely wiped out. I've just come home from a family party because I just can't stay awake and my head hurts so bad. X I'm on day 3 of my period (day one was horrendous).

  • Yes thats exactly what its like always on the left side and last last for 3-4 days its awful x

  • Snap always the left side just above my eyebrow and they're nausiating! X that one lasted 4 days and I get them about 3 times a month. I feel a little more human today but still tired. Will you let me know how you get on after your lap please? Xx

  • I also get the headache and sickness shattered just after doing something simple never thought of that .

  • Ps I got told mine is post natal depression but I don't feel depressed. It's not until I started bleeding outside of my cycle that they've considered endo. X I just hope it is endo and this isn't all in my head! I had to go the hospital for stronger pain killers this month as 800mg of ibuprofen and paracetamol didn't help the period pain. I feel like someone's poking my insides with a hot poker and then stabbing me. It eases up after day 2/3 thank god but I still feel so so tired all the time x

  • You sound like your going through exactly the same as me I was told I had post natal depression and that I just had a hormone imbalance I am currently taking anti depressants. I am definitely stressed out from being this ill n not knowing what was wrong with me but I don't think I am depressed. I will let you know how I get on with the lap, I feel same terrified its going to back that I don't have endo and everybody is going to think its all in my head, but surely its impossible to feel this bad and it just be in your head? When are you due to have your laparoscopy? x

  • Thank god for you, you sound exactly the same as me!! X when I had that period pain the other day I thought there's just no way that this is all in my head. I accept that I wasn't well after my baby but I feel better and okay mentally, it's just the physical side of it! X I'm booked in for the 10th July for my lap but I'm in two minds to get it. I'm so frightened of it not being endo and I've put myself through an operation for nothing. But as the surgeon said this type of pain and bleeding outside of my cycle and after sex etc isn't normal and needs to be checked. I tried anti d's but couldn't stick at them, they made my anxiety much worse. I did CBT Instead which helped a lot and I'm back at work now with holidays booked etc an I feel great mentally. I'm on day 4 of my cycle and I'm starting to feel okay again, until ovulation and I'll start bleeding again with headaches :( x I'll be so interested to find out your results from your lap xxx

  • I know I wouldn't wish this on anyone but kind of makes me feel better knowing that someone else is going through the same and its not just me. If the exact same thing is happening to both of us it can't be all in our head it must be endo! How old are you? If you don't mind me asking? I've just started my period today the pain is horrendous. The gyno put me on birth control and told me to take it with out a break to stop my periods but it hasn't worked still having 2 a month. I'm due to start CBT on Wednesday I wasn't sure about it but glad to hear it does work. I will let you know what my result's are, that's if i go through with it.. Im terrified lol xx

  • Me to I don't know if I can go through with the op but I can't carry on like this either - it's a pain in the ass!' Xx I can't even try the pill as I get migraines now, plus I'm scared to take hormones when I don't know what's wrong with me yet. I do think it's endo I've been like this for a long long time, it's just gotten worse over the years xxx

  • Im on the pill and my migraines have got worse so im thinking of coming off it to be honest it hasn't made any difference to my symptoms apart from makin my migraines worse and I actually have heavier periods now xx

  • Have you had your thyroid tested - blood tests: TSH, free T4, thyroid antibodies? Women with endometriosis are more likely to have/develop autoimmune thyroid disease. It is worth checking for.

  • Yes my dad has thyroid problem's so that was one of the first things they tested for n blood tests came back fine.

  • Did you get a print out of the results? Their (the doctors) fine and actual optimal are frequently different, e.g. sometimes being in the lower or upper end of normal can be wrong for am individual. If you have the results, you might want to post them on Thyroid UK, which is also on health unlocked, as the people on there are great at reading test results and giving thoughts on if there might be an issue when the doctors say it's all fine. Not saying it isn't fine of course, but just worth considering.

  • Thanks for this info Maybes I'm going to ask my GP if my thyroid has been tested properly xxx

  • You're welcome! Be prepared that they will probably say: yes. So do some of your own research and ask them for a printed copy of your results for your 'records'. That way you can check for yourself and also if you get tested in the future you'll have something to compare it too. Good luck xx

  • I find vits ( especially iron) help. Not cure but tone them down.

    Also i find foods can set it off. Still unsure as to whats wrong with me but hopefully the headaches will back off. Hormones are a pain.

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