Very bad fatigue?

[tinker1234]

I'm currently recovering from a lap operation which I had to remove a large 10cm chocolate cyst from my left ovary. After about 5 years they were able to finally confirm endometriosis after this operation, they found other cysts and also adhesions on the cavity wall and on the bowel. I have been back and forth to the doctors for years so it's a relief to finally have a diagnosis. It's so stressful when you know that there is something wrong with you but nothing gets done about it! The question I have is about the fatigue. I have struggled with really bad fatigue over these years, particularly around the time of my period, to the extent where it affects my work and my personal life. Does anyone else have these problems with fatigue? After doing some reading about other people's experience it sound like it could perhaps be endo related? Any advice or thoughts on this would be greatly appreciated! As I'm only recently diagnosed I'm still trying to get my head round it all and what it means for me.

[hayls]

Hi

I'm glad you've finally had a diagnosis, hopefully things will start to improve for you now you know what it is.

I also suffer quite badly from fatigue, there used to be no pattern to it and it felt like all the time but it is now only mainly during my period. Like you it interferes with my work/personal life and I hate feeling like I've lost entire days! I had to come home from work this morning as I didn't feel well, once I got home I couldn't keep my eyes open and was overcome with a need to sleep, it's taken me 30mins to force myself out of a coma-like state! I get so frustrated by it so I know how you feel!

X

[tinker1234]

Hi Hayls - thanks so much for your reply. I am sorry that you are also suffering with this, but it's nice to know that I'm not alone! I was starting to think that it really was all in my head. I feel the same as you and often need to take a nap in the afternoon and feel like I spend my weekends catching up from the week at work. I sometimes feel just generally unwell and it's miserable. It really is so frustrating isn't it, I feel like I really have to battle through the day a lot of the time. I hope that it gets better but I'm not sure how to manage to it with work and stuff.

I am feeling all sorts of emotions at the moment, it's such a relief to finally have a diagnosis, but I also feel quite angry at the time it has taken (although it was shorter than for some people) and that I felt nobody was really understanding what was happening.

It really helps to know that it's not just me and that I am not alone! I hope that you start to feel better soon and have a relaxing evening.

Thanks again xx

[Aquitaine]

I had awful problems with fatigue. It was really ruining my quality of life, as I pretty much spent all the time when I wasn't at work in bed. And I was on a special reduced-work arrangement which was messing up my career.

I also completely understand about the emotional ups-and-downs following diagnosis. I think a lot of us here have gone through this, and it's also much harder to handle these when you are feeling completely exhausted.

Here's the good news: I'm feeling much better now, so at least for some of us this is just a phase. It takes time to recover from surgery and to adjust to your diagnosis, but if you can get the treatment that suits you, then things can really improve. Sure, I'm not going to be superwoman, but that's fine. I'm now able to live a much more normal life, take a bit of exercise and enjoy things that I used to enjoy.

I don't know what will work for you, but I'd give yourself time to recover from the surgery (a 10cm cyst is a big deal) and to adjust to the emotions. If you feel angry, that's actually quite a healthy reaction (I was furious for a while, but have got over it now). The other thing is to make sure that whatever treatment you're getting to manage the endometriosis is working for you. Lots of us end up taking hormones, and it can take a while to adapt to these, so be persistent with your doctor and try a different prescription if you are feeling awful.

Personally, I also made changes to my diet, and am feeling a lot better. I know this doesn't work for everyone (and the last thing you need when you're completely drained is to spend all your time fussing in the kitchen) but it might be worth trying out if you feel up to it.

I really hope you start to feel better soon. For what it's worth, for me, the laproscopy was a massive step forward in recovering from the pain and fatigue (once I'd recovered from it - takes a while). I hope this will be the case for you too. Good luck xx

[tinker1234]

Thanks Aquitaine, it's good to know that it can get better! I have had a really bad week and am struggling to get back to normal at work and home. Luckily work are being really supportive but I'm starting to feel quite guilty that I'm still not back up to 100%. I am actually starting to wonder if a reduced hours arrangement would be beneficial for a little while. I just can't seem to get any energy back at the moment and it's really getting me down.

I have a follow up consultation in September when I'm hoping that they'll talk through what the treatment options are for me. I'm also hoping that they don't dismiss the fatigue side of things as trivial or irrelevant.

I've looked into the diet issue but haven't been able to get organised enough to try to make many changes yet. It's definitely something that I will pursue though as it does seem to make a difference for people.

This recovery business is a lot tougher than I expected that's for sure (I was only expecting it to take a few weeks - how wrong I was!), but it's good to know what it all is now and hopefully I can move on from here.

Thanks for letting me know about your experience, it really is very helpful xx