Endometriosis and fatigue

[hjlewis73]

I’ve had endometriosis for the last 10 years. I’ve been lucky enough not to have the severe pain that some people get, although after surgery in 2013 to remove tissue adherence from my colon, my gynae was surprised I wasn’t in severe pain. The main symptom I have is dull aches and severe fatigue which has lasted up to 2 weeks some months. I’ve associated this with endo because it seemed to be tied in with the dull aches and spotting I had in between periods. As this was a fairly new symptom which cropped up about 5 years after my initial diagnosis, I wanted to have a check-up to see if anything had changed and also talk about these symptoms. For the last 5 years, I’ve been harping on about the fatigue to doctors and gynaecologists without being taken seriously. The last visit was in January this year when I told the registrar gynae about the fatigue and low mood. She looked at me confused and said, “There are no studies to prove that there is a link of fatigue to endometriosis, you must be pre-menopausal”!

There obviously needs to be an official study in order for doctors in this country to start taking this seriously (that’s if I’m not the only one of course!) I would like to be part of that study, having suffered without any guidance to treatment for so long. 5 years ago, there weren’t many google results on this link. But now, there are many and there have been studies by Americans of women with this condition showing that there is definitely a link between endometriosis and fatigue. Whether they are true studies, I don’t know but we need an official UK study!

By writing this, I’m hoping that I’ll have a few/many responses saying that they have the same or similar symptoms and are also frustrated with the lack of study into the link and want one done in the UK so that doctors will take this seriously because it greatly affects our quality of life!!

Update: I’ve found an official study paper published in 2018, proving that women with endometriosis definitely suffer fatigue. I will be taking this paper to my gynaecologist(s) and rubbing it in their faces (politely!). I hope this helps others:

academic.oup.com/humrep/art...

[TamHA]

100% fatigue is linked to endometriosis in my opinion. I think, how can it not be? Your body is under immense physiological stress, dealing with not only pain, but also a HUGE amount of inflammation.

I had a lap 3 months ago to remove stage 4 endometriosis and I am absolutely gob-smacked at my new energy levels. Even family have commented that I seem to have improved energy and I am getting so much more done than I was. I can't believe why I thought was my 'normal' and 'baseline' energy was so far off the mark!

I think until money is found for this research we'll be waiting a while for anything further in this woman. It's not that doctors aren't taking requests for research seriously, it has little to do with them because research is enormously expensive and the government (HA) need to stump up the money to pay researchers to do this. I wouldn't want a doctor doing this research unless they have sufficient training in research! Hope the awareness that is being raised at the moment will force the powers that be to start putting funding into women's health research in general. We'll see!

Back to fatigue though, I've found it useful to follow guidance for chronic fatigue symptoms, has helped me a lot. Also taking a more natural approach to my cycle and starting to understand the ways hormones act throughout has been useful (our cycles are INCREDIBLE things if we are able to harness them!). Wild Power by Alexandra Pope and Code Red by Lisa Lister helped enormously with my understanding of energy levels throughout my cycle and fatigue.

Good luck!

[hjlewis73 in reply to TamHA]

Brilliant reply, thank you! Btw-since I wrote that post, I did another google search (as I do when I’m feeling absolutely drained!), and have found an official publication on a study of a link between endo and fatigue! I am going to print it out and take it to my doctor who can relay it to the gynaes! I’ve updated my post with the web link. It was very interesting that your energy levels improved significantly after surgery-that’s so good! But it makes me think whether I need another laparoscopic examination after 6 years since the last one which removed a lot of adherence from my colon..

I will take your advice on trying to manage the fatigue because I need something to make a difference! Thank you 😊👍🏻

[CJR99]

Hi there,

Just wanted to offer my support and comment.

100% there is a link! I get debilitating fatigue!I have had this disease (I believe) for may years. I am 47 and was only diagnosed 2 years ago during a total hysterectomy. Just like TamHA after I recovered from the surgery I felt so much stronger and had far more energy.

Sadly Endo returned and I had a brief reprieve last year after a lap but, I'm waiting for further excision surgery to hopefully nuke the cells!

Just been to the gym but, I'm completely exhausted. I do loads of on-line study...check out Dr.Tamer Seckin in the US... he talks openly about the link between chronic fatigue and Endo.

Keep the faith..please feel free to PM me if I can offer any support.

Best wishes,Clare

[Hidden]

It is known and more studies are done into this. I suffer from severe fatique as well for many years now, making me unable to work because of it. My gynea (ireland) did know and said 'of course your tired, your body is fighting all the time'. It is a side effect/symptom of Endo/Adeno so. What I read on Nook is that it improves massively or disappears after excision so I'm looking into that, besides taking supplements etc.

[hjlewis73 in reply to Hidden]

Yes, for the past week (it crops up every 3 months or so’ and knocks me for six!), I’ve not wanted to do the things I love doing which is mainly active. Yesterday I spent the whole day in bed and cancelled all of my work appointments. Just about caught up today but feeling crap this arvo. Waste of life, especially if someone might be able to do something about it 🤷‍♀️. I’ll do the same as you and look into further incision if it’s going to help, especially now I can show them the publication study that I’ve found on the net which proves the link! Thanks for your comments 😊

[hjlewis73]

Aww, thank you Clare for your supportive comments, it gives me more fuel to jeer my (3)gynaes whom I’ve seen, to do a bit more than nothing for me- I’ve felt ridiculed when I mention fatigue -every time-they’re in complete denial! This is Southampton UK NHS btw- not sure if anyone else is having to bang their heads together to get them to catch up on some CPD publication updates?! I’ll look up this Dr Tamer Seckin. Thank you. I’m glad I came on this site for some moral support!