Really really struggling :(

I'm 19, almost 20. I was diagnosed with endo 2 months ago after having almost non-stop chronic back and pelvic pain.

I'm almost used to the pain now, the days I don't have any are almost non-existent.

It's the fatigue I can't cope with. I'm not even into my 20s and no matter how much I sleep, or rest or eat I feel exhausted all the time. I work 9-5 full time too. I've gained 3 stone in the last year because I barely have the energy to function never mind work out. It's making me so depressed, to the point that it's beginning scare me how miserable I am.

If any of you with endo have this mind of fatigue please help and let me know if ANYTHING makes it better :(

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  • I'm so sorry to hear how much you're struggling hun. I was only diagnosed 18 months ago and still find this condition hard to deal with, but please stay strong... I too suffer with extreme fatigue and work full time.

    I find my fatigue is far worse when I'm bleeding (which is most if the time), however I was put onto Zoladex injections 6 months ago and this has helped a lot. Don't get me wrong the injections haven't come without a list of side effects and emotions, but it has stopped my fatigue.... for the first time in a long time I feel slightly "normal". I was diagnosed with depression 3 months ago owing to all if the upset and stress endo has caused me, but slowly I'm starting to see the light at the end of a very long tunnel...

    I think you should see your GP with regards to how low you are feeling, endo (like any incurable condition) is very hard to deal with and depression seems to go hand in hand with it!...

    You're not alone, just try and remember that. If you ever need to chat feel free to contact me on here on private message.

    You WILL get through this, it's such early days for you, so much to take in!

    When I was first diagnosed I ordered a book "Endometriosis for Dummies" it spells everything out very clearly, it helped me a lot to understand my condition and to not beat myself up about my symptoms, but to try and deal with them...

    I'm sorry I've rambled, I just don't want you to think you're alone, just try and take one day at a time...and be kind to yourself!

    Take care

    Kelly xxxx

  • Hello lovely,

    I'm so sorry you are feeling so low but please now you aren't on your own. The effect endo has on us can be so horrid, it's enough to make even the most positive person feel incredibly low.

    My first thought is that you should go to your GP and explain about your mood. They can help. It won't take away the problem but will help you deal with it all a little more.

    Secondly, I have had and do have the fatigue you describe. I'm 31 now, only just diagnosed but had gynae probs since age of 22. Through my teens I suffered a lot with fatigue, exhaustion, which carried on and as I'm going through a bad endo patch at the mo it's back with a vengeance. There isn't much sadly you can do about it, other than go with your body and sleep. Again, talk to your GP about this - but it may be worth being signed off work for a bit. No one likes being off work but sometimes we need to.

    How are they treating your endo? If there is a treatment plan in place over time that shd alleviate symptoms. If you don't have a treatment plan go back to your gynaecologist.

    It's a miserable place to be, and you can just feel that you have no quality of life but it won't always be as hard. I can't promise it will disappear but you will come to manage it and treatment can really help.

    With regard to the weight, the only thing I have done to tackle this is begin the endometriosis diet (google it). It is pretty strict, but not only helps with weight but also with symptons including pain and tiredness. Doing something like this can help you feel as though you are at least in control of one thing, when so much else is out if control.

    Please know though that you aren't alone and the way you are feeling is entirely natural.

    Do talk to your GP about it all, and if you can get support (even if its just a hug) from those close to you.

    I hope things starts to improve at some point for you. God bless xx

  • Hi itswd, sorry to hear about how low you have been. Many of us on here can relate as fatigue is very common in ladies with endometriosis.

    I get fatigued but I've always dealt with having less energy and feeling tired as aside from the endo I've always had iron deficiency anaemia.

    I feel a lot better at the moment and I put this down to taking vitamins and supplements, making some changes to my diet and allowing myself time to rest and recuperate when I really need it.

    Have you had any blood tests done? If not I would recommend you see your GP and speak to them about the tiredness/fatigue as they can test your blood and put you on tablets if needs be. I can now tell when my body is low on iron for instance and when that happens I start taking a iron supplement which usually helps.

    I would also recommend that you speak with your GP about the pain you are experiencing. If you are not getting pain relief from regular ibuprofen and paracetamol tablets they can prescribe you stronger pain killers that may help.

    Please go and see your doctor

    All the best my luv

    Tina

  • has anyone bothered to test you for thyroid antibodies

    TSH

    Free T4

    Cholesterol

    Ferritin

    Hypothyroid seems to go hand in hand with endo

  • So sorry you're feeling so low. I was diagnosed with Endo when I was 18 (20 years ago). It got so bad and scary I was bedridden for 7 months before finally diagnosed. GPS, at least in a small village in Yorkshire, had no idea what Endo was then so I was on all manner of strong painkillers and relaxants as they thought it was stress. Yes I was stressed as I was in agonising pain! It's tough, it's really tough but due to the things I now do it pretty much only affects me now the week I have my period. Which is horrid but way better than every day. I would def suggest researching the Endo diet and also get tested for anaemia. The fatigue used to floor me even on the days the pain wasn't as bad. Taking high potency iron tablets has remarkably improved that.

    The first thing I did was cut out all citrus fruit. It improved the pain so much. Everyone is different but do some research and gradually cut out foods that are known to aggravate Endo. One of the drugs they first put me on left me with high blood pressure the rest of my life which means I can't take a lot of the usual meds prescribed for Endo so I've had to take the natural approach a lot of the time. Message me if you'd like as I can give you a whole list of things I've tried and what has helped. For now I'd say research supplements - iron for fatigue, evening primrose oil and magnesium which helps with the contraction-style pains. Dead Sea salt baths and aromatherapy help me relax and sleep better. When it's bad, don't fight it - your body is working hard and needs lots of rest. If you can get the fatigue under control, try swimming and yoga. It's helped me control the pain.

    Take care and know you're not alone. You will get so much support from those on this forum. Xx

  • I just wanted to add I'm in no way suggesting you treat Endo the natural way alone. Seeing a specialist and discussing treatment options with them is the first go-to. Many many women have great success with what they're prescribed and the options these days are wide. My treatment options have just been limited due to other conditions so for me it's more pain management through my gp and gynaecologist and then the natural approach researching supplements, gentle exercise, diet etc.

    Do as much research as you can and come on here often. Things will improve and you'll get through this. Xx

  • Thank you all so much for your responses! It's so nice to know I'm not alone.

    I had multiple blood tests before my diagnosis, including one for anaemia, which I don't have.

    I also follow a vegetarian diet which is similar to the endo diet.

    I'm just on a constant daze of not quite awake. I can't get to sleep because of pain and when I do sleep it makes no difference.

    I just want my life back. I've got these scars from the laparoscopy but I've got nothing to show for it in my day to day life :(

  • Weirdly I had a test for anaemia and it didn't show. I was desperate due to the fatigue so tried iron supplements anyway for a month. I felt so much less fatigue the following month and my periods are now a lot lighter. Maybe chat to your gp about it and give it a month's trial.

    There's nothing worse than sleeping lots and still feeling dreadful. I presume when it's bad I'll need at least 10 hrs sleep. Quite often a lot more. Take painkillers before bed, take a warm bath with Dead Sea salt, look online for short bedtime yoga stretches, keep away from caffeine, try camomile tea and go to bed with a hot water bottle at your back or tummy. I also found doing an abdomen massage with olive oil and lavender essential oil made me sleep better. There seems to be different opinions on using lavender with Endo but I find it helps so it's worth researching and experimenting with different things. I also take a magnesium supplement before bed which helps you to relax. Your poor immune system is working hard to fight the pain so the best chance you can give it is to get the best quality sleep poss. I know that sounds impossible when you're in pain but various techniques can help.

    In the morning try berocca or a good quality b vitamin complex. It can help increase your energy levels a little.

    As soon as you work out what may help you you'll feel a lot more empowered. It's very scary when you're first diagnosed and it's a crap, unpredictable condition but there are a lot of things that can help from medication to relaxation to diet. You will get it more under control and in the meantime be kind to yourself, check what painkillers people on here have had success with then speak to your gp or consultant. Take care. Xx

  • Have you ever thought off changing diet like cutting out wheat or dairy or even both it helped improve my symptoms n ino someone else who suffers endo n it has helped her too

  • Hello sweetie

    I know how hard fatigue is too - it can be crippling. I've just been diagnosed but have been struggling for as long as I can remember with fatigue and depression. Now I am trying gluten free stuff and organic everything else (although how long that'll last as it's so expensive I don't know!). I work too - but perhaps you could try dropping down your hours at work a bit - maybe speak to your employer and see if they'd be open to the idea? The thing that I find helps a lot is getting up early at the same time every day (no matter how much you haven't slept!) and getting out and about in the fresh air - try going for a walk first thing. I'm still exhausted by mid afternoon and totally wiped out in the evening but it gives me that slight edge most days to be able to keep going (sometimes not!) but I find it works more often than not. Weirdly cutting down/out caffeine helps too if you can manage it. Good luck. x

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