Need help overcoming endo-fatigue!

[daisylouise]

HI, new here and need some advice.

I am 20, at uni studying fine art and history of art. I had my first lap about 9 months ago and the pain has already come back and am due to have another scan and probably another lap soon.

Since my OP things got better and then they got much worse, especially in the last 2 week. I have have really felt the impact of endo fatigue on me and at first I decided i'd listen to my body and tried to sleep it off, but it seemed to make it worse and I got these awful headaches which I read are a part of endo-fatigue. It's even worse when I get break through bleeding, like at the moment and I'm still in pain in my lower back and hips anyway so just curling up in bed and being seems to be the closest thing I have to relief.

I have tried talking to my house mate about it, someone I would consider my best-friend but she just doesn't get it and it's made me feel worse and about it a retract into myself even more.

I really want to and need to find a way to try and not let it control my life. I want to find something that motivates me to over come it and help me get up and stay up.

Even the smallest suggestions are so so welcome, I am getting desperate

D xoxo

[MischaM]

Hi,

I'm so sorry you're being made to feel worse.

I'm still trying to find ways to gain some kind of control back over my life, but the best bit of hope so far I've had is a book that's more like a biochemistry text book but also advises on ways to help your symptoms via nutritional intake.

It's on Endometriosis UK's website, it's where I heard about it. If you look up their "Treatments" PDF they recommend a book. I would send links but I don't want you to feel like I'm trying to sell something. I've started reading it this weekend and it seems to be very useful so far, and I'll be testing out the change in diet this week. Their website also has info on support groups and a helpline you can call. I've called once and the volunteer was very friendly and helpful

I wish you the best of luck xxx

[daisylouise in reply to MischaM]

Thank you so much for this! I will have a look. Both the book and helpline sounds very useful. Thank you very much!

[Emiilykatex]

I'm sorry you are feeling the endo fatigue, it really is awful!

I think it is hard for other people to understand and empathise properly when they haven't experienced it, your friend might just not know what to say or how to help?

Getting out of bed everyday is a struggle, but I find that eating well and trying to do some form of excercise does help the fatigue , even just a small walk. Are you managing your pain okay? I find it especially hard if I'm in pain, but with trial and error I have a concoction which mostly works! Keep going back to your GP, you shouldn't have to deal with pain.

One of the best things for me was starting a hobby that kept my brain occupied. It sounds silly but I found it so therapeutic! I started sewing and now I'm actually pretty good!

Please take care of your mind and do what makes you feel happy. Mental health is so important and can have significant effects on your body too, fatigue especially. Focus on battling those negative thoughts and remembering things WILL get better. Get some fresh air and sun (if we have any!) everyday, staying inside all the time can make you feel even worse! Your perception of your situation can hugely impact how you feel about everything. It's hard to stay positive, but it is SO important!

I hope you find some peace and things get better, everything does eventually! X

[GrittyReads]

Talk to the advisors at 'Endo UK ' (links at top of page) and run all the details of your treatment so far, past them. It may be that you should have been referred to a specific Endo treatment centre and/or pathway, rather than the average hospital Gynae people, who don't always know the up-to the minute stuff on Endo. Also, ask them if there is an 'Endo UK Support Group' in your area. Many of the younger people at my local 'Endo UK' (I'm in Devon) discovered loads of info they had not known at the inaugural meeting of our group.

From now on, make it a policy to take someone with you to all Medic meeting. Have a list of questions to ask and points to clarify, once you've talked to 'Endo UK' - and prime your friend to ask any you forget. Also, make sure you have all your letters, notes, results etc from all GP, Medic, Hospital etc consultations.

There are US and Canadian 'Endo' groups - Google and you will find lots more.

NB Some of them have some quite graphic films and articles about 'Endo' ... which might be useful to help friends, parents and partners understand how awful - and gruesome - Endo can be. Loads, even women, still think it's just 'bad period pains'.

I think there is an Endo Facebook Group too.

Hope this helps, take care.

[Hidden]

Honestly, the only thing that gets me through the day is a nap. I get extreme fatigue, and if I don’t nap for an hour each day (around 2pm) then I’m almost dead on my feet by 5pm.

[Maisymac]

I’m so sorry you are having such a difficult time!

I was diagnosed with chronic fatigue syndrome when I was in my early 20s and fatigue is something I’ve battled with my whole adult life. I suspect that my fatigue was in actual fact endo fatigue.... I ‘m sorry that your friend didn’t get it - I’ve had lots of people think that fatigue is just being a bit tired / lazy - it’s so isolating as it can be totally debilitating!

The things that have helped me are pretty simple... whilst I still struggle I able to manage my fatigue most of the time now.

I try and stick to the same bed and getting up time - even if you are resting in the day... the routine has always helped me.

Echoing what others have said for me food is really important- even if you don’t feel like eating regular meal times help.

Finally you could try graded exercise- there are loads of articles on this online.

I hope you find something that helps you, and that you get some support from those around you