Chronic fatigue

[flossy24]

Hi all

I am 27 years old and been diagnosed with mild endo for a year.

The pain since the lap has subsided as I have the hormonal coil and barely have a period but recently it has come back with a vengeance and my flares up are getting worse.

I have just started a new high profile job and have been tired a lot from this. More recently however I have been really struggling once my working week is done, it gets to the weekend and I am exhausted and all I want to do is sleep.

Today I slept for nearly 14 hours and I still feel so fatigued , is this normal?! I feel guilty for wasting what could have been a productive day and isolated and lonely as my friends don't understand why I can't just get in with it. I don't want to be one of those people that feels like they are defined by their illness but it is starting to take over.

Does anyone else really struggle with fatigue? I am usually a really happy go lucky person and I am fit and healthy and quite an active person. To waste a day lying around in bed is crippling me.

My endo is on my bowel and they couldn't remove it, whilst it's mild I am worried that it will continue to get worse. Can anyone offer any advice at all, I feel like I'm really starting to struggle.

Thanks so much!

[Marcia71]

Unfortunately fatigue is a symptom of endo and can get worse or better as disease continues. It just depends and is different for everyone. I still get ridiculously tired if I do slightly more than lay on the sofa at the weekend.

I had to give up my senior job in London as I just couldn't cope with the commute and long hours. I was constantly tired and ratty and found I didn't do anything but work.

I now have a local job but still struggling with fatigue so hoping for more treatment. Make sure you're with a BSGE centre as they should be able to help endo wherever it is.

Best of luck.

[Hidden in reply to Marcia71]

Helpful reply

I just wondered what a BSGE centre is?

[Marcia71 in reply to Hidden]

They are specialist endo centres. BSGE stands for British Society of Gynaecology and Endoscopy - you'd guess that meant endo centre!!

Anyway look in their website:

bsge.org.uk/centre/

To find your nearest. Also look on here at Lindles posts on treatment pathway. V helpful.

Finally I'd say join a new Facebook group called endometriosis revsisited as it run bubble linda and she is really helpful.

[Hidden in reply to Marcia71]

Thanks so much!

Just tried finding that Facebook group, and nothing comes up though!?

[Marcia71 in reply to Hidden]

Sorry it's called endo revisited and is a closed group. Hopefully this link will work for you:

facebook.com/groups/1148144...

[Marcia71 in reply to Marcia71]

Meant to say. Do ask any more questions as there's usually someone that can help.

[NS2408]

Hi Flossy,

I'm sorry you are feeling so poorly. I know exactly what you mean about getting to the end of the week and being completely exhausted because you have pushed yourself so hard to meet all your work commitments. I would feel like I could fall asleep at my desk by 14:00 and in the evening I would go to bed at 21:00 but still feel tired and sore when I woke up.

I have recently changed jobs as I used to be a manager in a large and busy 5 star hotel. I was really struggling with the manic pace and unusual working pattern, sometimes working 8 or even 10 days in a row. I have done this work since I was 18 and loved it (now 34) but once I came off the pill and Endo showed up 2 years ago I couldn't do it anymore. So now I work in an office job were I get 1.5 hours of breaks a day and only work Monday to Friday 7.5 hours a day. I still have weeks when I have a bad flare up and struggle to be in the office all day at my desk, but I can work from home which really helps. If I feel really bad I can call in and say I am working from home today and I can do exactly the same role at home as I would if I were in the office. Soon I will permanently work two days from home a week and I feel like it will really help me. I pushed myself this week and felt really sore on Friday. Yesterday morning I couldn't get up and do anything until 13:00 when I had a hot bath and my painkillers kicked in. It is hard and the effect it has on your whole life is terrible. Maybe see if you can change your work schedule to give you more time to rest during the day or to work from home occasionally to help reduce fatigue. I hope this helps and that you can do something to feel better soon.

Nicki

[Stellauk]

If your have endometriosis lesions remain in you then fatigue will not go away. You need to go back and insist on referring to a BSGE centre. Do you have private health insurance? This can make things moving a bit faster. I had endometriosis removed from my bowel but a colon surgeon was also present to do it. So it can all be removed properly.

I wouldn't give up your dream work because inadequate surgery. Previous to my surgery, I did have increased fatigue which I put down to old age (40!). I managed a full time job and completed a master degree. However, I was struggling towards the end. After surgery I definitely feel much better and have more energy.

Don't give up,and all the best.

[KatJPW]

I'm sorry you are experiencing this; I have exactly the same thing. I like to get up early but have slept until just now, so 11:15 and it seems such a waste! I have lost friends because I have had to cancel so many things. I often dont have the energy to get ready and my body just wants to sleep so I end up doing nothing and that also makes my depression worse. I'm sorry I dont have any advise here as I need it myself but I wanted you to know that it is normal and you are not alone! Good luck and I hope it improves for you xx

[Loulou24]

I have the same issue. I moved jobs so I only have a 5 minute drive (walking really hurts) instead of a 45 minute commute each way. I find having a nap when I come back from work helps. Though I find I sleep lots at the weekend. Stress makes the pain worse which then makes me shattered so I am thinking of changing jobs completely. I hope that you have a pain free day x

[flossy24]

Thanks for everybody's comments that have really helped. If it's possible I am in even more tired than earlier. Going to rest up today and try to take care of myself xx

[Jomcb]

Hi, I'm the same used to go to gym get up early but really struggle now, I put it down to old age firstly but I think the endo is responsible. I just had lap and endometriosis removed from back of uterus the only thing that's gone is the terrible pain in back and hip. I feel it just stops me from doing what I want!!

I have endo on bowel also but there was no mention of removing that!

Hope you feel better soon?!