Endometriosis and fatigue : I’ve had... - Endometriosis UK

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Endometriosis and fatigue

hjlewis73
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!!

13 Replies
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I've not been diagnosed with endometriosis but I have finally been referred to a gynaecologist. I've been complaining of increasingly severe cyclical pelcvic/ lower ab problems since 2009 & have only ever been referred for repeated ultrasounds. In the meantime I was actually diagnosed with ME/CFS & Fibromyalgia because the unexplained fatigue was such a problem. Although, if I am actually found to have endometriosis my ME specialist will retract her diagnosis because that will explain the fatigue in their opnion. Your post is making me feel like there is a chance I'm not going down the wrong track by seeing the gynaecologist.

hjlewis73
hjlewis73
in reply to Beestaree

Oh that means a lot that my post is making a difference, thank you! I updated this post yesterday because I found an official publication released in 2018 of the link between endo and fatigue academic.oup.com/humrep/art... Hope this helps!

It sounds very much like you have endometriosis with these similar symptoms but I can’t believe they haven’t referred you earlier to a gynaecologist especially as it is cyclical! You are definitely going in the right direction. Let me know how you get on! Good luck 😊

Beestaree
Beestaree
in reply to hjlewis73

Thank you so much. It's been such a long journey to be heard about my cyclical symptoms & hope it's not hyperchondria! I now need to put my trust in the gynaecologist that I'm seeing which is making me anxious. Interestingly the endometriosis UK consultation questionnaire has a section on fatigue. But from my experience as an ME/CFS patient it's impossible to treat & very difficult to manage - perhaps that's why it doesn't appear to be taken seriously by doctors? That doesn't mean it should be dismissed though!! Sorry you're not being heard & thanks for your kindness 😊

Beestaree
Beestaree
in reply to hjlewis73

Have you seen spoon theory? That helps put fatigue in context. The main thing that helps me manage is to pace myself. A big part of it is accepting my body can't do all I'd like it to: taking life slowly & minimising my activity. I have shorter days at work now & if I could have 15 mins of mindfulness every couple of hours I'd be coping much better but that's not easy! I've tried loads of supplements & an anti-inflammatory diet but unfortunately didn't see a benefit although magnesium, vit D & vit B supplements are thought to be helpful so, worth a go.

I have confirmed endo and extreme fatigue, I’m with you! X

Are your doctors listening to you? What advice are professionals giving?I’ve been told I’m premenopausal and been given HRT! I think that’s the worst thing I can be given- it could make my endometriosis worse couldn’t it?!?!

I’m lucky in that my gyne is an endo specialist, people come from far and wide to see him, he is so kind and understanding and called my fatigue TATT on my notes saying it’s a common symptom-tired all the time! Unfortunately even he couldn’t give a cure but did recognise it as coming as part and parcel with endo (as did the occupational health dr I saw for work). My understanding is it’s around our immune system response to the endo-if it’s busy trying to deal with it it’s going to tire us out. I now take some B vitamins that help the body release energy and vit c to help give my immune system a boost. It’s far from a cure but I think it helps a little x

Oops liked your post 2 too many times 😂. It’s great you have an understanding gynae who doesn’t look at you as if you have 2 heads. Understanding is half the therapy! I’ll try vitamin B. Thanks for that info 👍🏻

I haven’t officially been diagnosed, have an exploratory lap in 3 weeks, but have suffered from what I suspect is endo for years. I’ve also always had chronic fatigue issues but I can absolutely say that when I am on my period or have a flare up with my pelvic pain my fatigue is completely debilitating. You’re 100% not alone.

It’s great to know I’m not alone, however I feel like the only one complaining at the GP or the gynaecologist! They look at me as if they haven’t had anyone else complaining of the symptom- so frustrating! But now I have this study printed out, I shall feel more confident to force the issue for all of us suffering with it!

I was diagnosed with a cyst 10 years ago and put on different contraceptions, that was what the specialist recommended would help. Fast forward to 2018, I decided to get off the contraception I was on as my body was reacting negatively to it. That’s when the cyst rapidly grew, I started getting pelvic pain and pain during sex my doctor thought it was cancer. On further examination a gyno consultant diagnosed me with endo. I had a diagnostic lap in 2019 that confirm I had stage 4 endo. The diagnosis makes every thing make sense, the pain I was experiencing, the constant exhaustion and didn’t know what was the cause. I thought I was being lazy and was being hard on myself when I had the flare.

hjlewis73
hjlewis73
in reply to Roro1

So it sounds like when you were on the pill, the oestrogen was low/cut off but when you came off it, the oestrogen was released and caused the growth? Nooo the fatigue is real and debilitating! It’s difficult to convince others that you have fatigue symptoms especially if the doctors aren’t backing it up! Are you having treatment for the fatigue? If so, what are they suggesting?

My GP isn’t that great. I’ve had to give him all the information and research I have done in endometriosis. The consultant is more concerned about getting rid of the endo. His putting me on temporary menopause injections and surgery in the next 3 months. To answer your question, no I haven’t been treated for fatigue.

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