Daily Life With Endometriosis Fatigue

Despite the pain and discomfort caused by endometriosis, one of the worst symptoms of all can be the fatigue that comes along with it. Constant fatigue affects every area of your life, so if you experience this and you’re wondering what to do about it, we’re diving into the physical and emotional tiredness that can occur when living with long-term endometriosis:

How many people experience endometriosis fatigue?

It appears to be common. One study of 1,120 people with endo and 560 without found 50.7% of those with endo reported frequent fatigue, compared to just 22.4% of those without. Results remained consistent when researchers considered factors like BMI, history of depression, insomnia and more. No matter how intense other endo symptoms may be, fatigue can be present and negatively affect many areas of life. 

What is endo fatigue and why does it happen?

In other words… what is it about this condition that makes people so bloody tired?! It’s thought endo-related fatigue happens as a result of the body trying to get rid of diseased tissue. The immune system tries to attack endometriosis, causing cytokines (inflammatory toxins) to be secreted by the tissue, and these chemicals are often the cause of fatigue. 

Similar to when you feel fatigued and run-down during a bout of flu, it happens when your immune system is busy fighting something off, which takes up all your energy. Heavy menstrual bleeding is another common symptom of endo, and losing a lot of blood can lead to low iron and possible anaemia, which is known to cause fatigue. 

Why do I keep hearing about chronic fatigue syndrome? 

Chronic fatigue syndrome (CFS) is pretty much what it says on the tin; a long-term, sometimes inexplicable symptom of tiredness - in many cases, symptoms of endo can lead to this. CFS has been found to be more common in people with periods, and one 2011 study suggested those who have experienced endometriosis, ovarian cysts, irregular periods, gynaecological surgery or pelvic pain are more likely to develop CFS. 

“When I was first diagnosed [with endometriosis] I became extremely tired, even having a shower would leave me in bed for the rest of the day. I was later diagnosed with Chronic Fatigue Syndrome (CFS).”  - Louise, speaking to Endo UK

Is my endo fatigue anything to worry about? 

You shouldn’t put up with endometriosis pain, and we would encourage anyone with symptoms to visit their GP and discuss what can be done. That said, it’s not life-threatening, just incredibly frustrating, as extreme tiredness can cause you to miss out on things in favour of sleep or rest, and affect how much energy you can give to certain areas of life, for example, career, relationships, time with your kids, social activities, and more. 

In one study, 22 subjects reported feeling endo-related fatigue with varying intensity, and the majority said their tiredness was at least “somewhat bothersome”. If at the very least you experience mild fatigue every month, this is still something to discuss with your GP.

How do I handle the physical fatigue of endometriosis? 

Just like when we said it’s similar to having the flu; endometriosis fatigue can be due to a chemical reaction in the body, and therefore it’s unlikely you’ll be able to simply ‘sleep it off’.

• Speak to your doctor to discuss treatment possibilities like medication, hormone therapy or surgery. They may also want to check your blood to ensure nothing in your iron levels, blood sugar or thyroid hormone could be contributing to your fatigue.
• A healthy diet rich in protein can boost energy throughout the day. You could also try avoiding excess sugar, anything processed, and any ‘junk food’ for a while. 
• Supplements can also improve your energy levels and have you feeling loads better in just a few weeks. Your doctor can recommend any nutritional gaps you may have. 
• When you’re feeling lethargic, exercising is the furthest thing from your mind, but maintaining a gentle, low-impact exercise routine can actually improve fatigue. Try short workouts, yoga, swimming or walking to improve energy levels. 
• Maintain a healthy bedtime routine to improve daytime fatigue. 7-9 hours is recommended, but try to get as much as possible by going to bed at the same time each night, having a bath beforehand, avoiding screens - all that good sleep hygiene!

How do I handle the emotional fatigue of endo? 

Endo-related fatigue is a symptom that can take a real toll on your mental health, so it’s important not to fight against tiredness, but rather, accept your need for more self-care and compassion than you may normally give yourself. Understand your body’s limitations and try restorative activities to maximise the times when you’re feeling more energised. 

Talking to others about your fatigue can also help. Covering up why you can’t make certain social plans may work as a short-term solution, but it’s much better to let friends and family know what you’re experiencing and the times when you are more likely to feel your best. If cocktail night tends to wipe you out, ask your friends to go for brunch instead - adjust your plans for a while to help manage your social life while still giving your body rest time.

Should I speak to my doctor about my fatigue?

Yes! Yes, a thousand times, yes. Please don’t ever feel that tiredness is something you can’t speak to your doctor about. If it’s negatively impacting your life, get advice on how to lessen its effects, and hopefully treat the root of the problem. 

Do you suffer from endometriosis-related fatigue? We’d love to find out how you manage it day-to-day so we can continue to share advice with others. You can ask questions on our Full Stop FB group, or reach out to us directly on Instagram at @itsyoppie. Don't forget that our personalised menstrual cycle subscription box can get organic tampons, PMS supplementsand much more delivered easily and regularly through your letterbox, which is one big load off your mind each cycle.