The Fatigue No One Understands – Living with Endometriosis Exhaustion

Sometimes, the most important thing in a whole day is the rest we take between two deep breaths. — Etty Hillesum

Image from Freepik

Fatigue is one of the most debilitating symptoms of endometriosis, yet it’s also one of the least talked about. If you don’t experience it firsthand, it’s hard to grasp just how deep, relentless, and overwhelming it is. This isn’t just being “a little tired” after a long day—it’s an all-consuming exhaustion that can knock you down, no matter how much you rest.

For many endo warriors, fatigue is just as disruptive as the pain. It makes simple daily tasks feel like climbing Mount Everest, forces us to cancel plans last minute, and sometimes even makes getting out of bed feel impossible. But why does endometriosis cause such intense fatigue? Let’s break it down.

Fatigue in endometriosis isn’t just about not getting enough sleep. It’s a complex issue caused by several biological and physiological factors, including:

1. Chronic Inflammation

   • Endometriosis is an inflammatory condition, meaning the body is constantly in a state of fighting itself. This ongoing inflammation triggers the immune system, leading to persistent tiredness, much like the exhaustion that comes with having the flu.

2. Hormonal Imbalances

   • The hormonal disruptions caused by endometriosis, especially excess oestrogen and progesterone imbalances, can interfere with energy levels. Many others also experience iron-deficiency anemia due to heavy menstrual bleeding, further worsening fatigue.

3. Pain-Induced Insomnia

   • It’s hard to get a good night’s sleep when you’re in pain. Many of us toss and turn for hours, wake up in the middle of the night due to cramping, or struggle to reach deep, restorative sleep. Sleep deprivation over time worsens fatigue.

4. Overworked Nervous System

   • Living with chronic pain means our nervous system is constantly on high alert, making the body work overtime. This state of prolonged stress drains energy and leaves us feeling exhausted, even when we’re doing nothing physically demanding.

5. Medication Side Effects

   • Many of the medications used to manage endometriosis, including hormonal treatments, painkillers, and muscle relaxants, can have fatigue as a side effect.

When you put all of these factors together, it makes sense why endometriosis fatigue is so severe—it’s like running a marathon every single day, without ever getting a chance to recover.

One of the best ways to explain chronic illness fatigue to someone who doesn’t experience it is through the Spoon Theory, created by Christine Miserandino. It’s a simple yet powerful way to visualise how much energy people with chronic conditions have to work with each day.

Imagine that every person starts their day with a certain number of spoons, which represent energy units. A healthy person might have unlimited spoons, meaning they can wake up, go to work, exercise, socialise, and still have energy left over.

But for someone with endometriosis, we wake up with a very limited number of spoons—sometimes as few as 10 spoons for the entire day. Every activity we do costs a spoon, and when we run out, that’s it. There’s no pushing through or borrowing from tomorrow.

• Getting out of bed? That’s 1 spoon.

• Showering? Another spoon gone.

• Going to work? That’s 3 or 4 spoons.

• Making dinner? There goes another spoon.

• Trying to exercise? Forget it—that might cost ALL your spoons for the day.

Meanwhile, a healthy person can do all of these things without even thinking about it. But for someone with endometriosis, every single task requires careful consideration. Some days, we have to decide between making a meal or taking a shower because we simply don’t have enough energy for both.

And the worst part? We don’t know how many spoons we’ll wake up with. Some days, we might start with 15 spoons and feel semi-functional. Other days, we might wake up with only 3 spoons, making it impossible to do anything beyond the bare minimum.

Fatigue and I have been in a long-term, toxic relationship, and lately, it’s been getting worse. I thought I had a handle on it—pacing myself, resting when I could, trying to eat well—but endometriosis always finds a way to humble you.

Recently, I hit a new level of exhaustion. The kind where no amount of sleep could make a difference. My body felt like it was shutting down, like I had been unplugged from my energy source entirely. It wasn’t just the usual endo fatigue—it was something more. I found myself catching every virus in sight, completely drained, barely able to function. Work? A struggle. Moving? Felt impossible.

Knowing that something was seriously off, after spending a full day in bed I dragged myself to see a doctor—one who wasn’t my usual, trusted physician. I explained my symptoms, the never-ending fatigue, the inability to shake off any infection, and the fact that I was barely staying afloat. After looking at me like I was a walking contagion, they suggested that my immune system must be severely compromised. To confirm, they ordered a series of blood tests, including a COVID-19 test (just in case).

When my results came back, they showed that my white blood cell count was dangerously low—below the normal range. For reference, a normal white blood cell count typically falls between 4,000 to 11,000 per microliter of blood. Mine? Sitting at around 2,000. My immune system wasn’t just struggling; it was practically waving a white flag in surrender.

White blood cells (WBCs) are the body’s first line of defense. They fight infections, viruses, and anything that threatens our health. When your WBC count drops below normal, it’s known as leukopenia, which makes it harder for your body to fight off infections. Even a simple cold can take forever to recover from, and you become vulnerable to more serious illnesses.

A low WBC count can be triggered by several factors, including:

1. Chronic Illness & Inflammation

   • Autoimmune conditions (like rheumatoid arthritis or lupus) can cause the immune system to attack healthy cells, leading to low WBC production.

2. Certain Medications

   • Immunosuppressants, chemotherapy drugs, and even some pain medications can suppress bone marrow function, reducing WBC production.

3. Severe Stress & Chronic Fatigue

   • Prolonged physical stress (like the kind that comes with chronic pain) can weaken the immune system over time.

4. Vitamin & Mineral Deficiencies

   • Lacking essential nutrients like vitamin B12, folate, and zinc can impair the production of white blood cells.

     
     

Given my battle with endometriosis and seronegative rheumatoid arthritis (RA), it’s no surprise that my immune system is struggling.

• Endometriosis & Chronic Inflammation: Constant inflammation can weaken the immune system over time.

• RA & Autoimmune Dysfunction: With my immune system already attacking my own joints, it makes sense that my WBC production is affected.

• Medications I Take: Some treatments for chronic pain and autoimmune conditions are known to suppress WBC levels.

All of this combined has left my immune system completely drained. And the worst part? It’s not just about being tired anymore—it’s about my body’s ability to even protect itself.

Aside from acting like they wanted to disinfect the entire room after speaking to me, the doctor suggested that I start taking “better supplements” to boost my immune system and energy levels. They weren’t wrong, but their delivery could have used some work.

This conversation, however, pushed me to speed up my research into IV therapy as a way to replenish essential nutrients. Given that I already take a ridiculous amount of pills daily, the idea of absorbing key vitamins and minerals directly into my bloodstream (instead of relying on my compromised digestive system) sounds like a win.

The benefits of IV therapy for immune support & chronic illness include:

• Better Absorption: Bypasses the gut, meaning nutrients go directly into the bloodstream.

• Immediate Energy Boost: Many people report feeling more energised right after treatment.

• Tailored to My Needs: Can be customised for immune support, energy, and inflammation reduction.

I’m looking forward to trying this out and sharing my experience with all of you once I get started. Hopefully, it’s a game-changer in my battle against this relentless fatigue.

If you have a loved one battling endometriosis, here’s how you can help:

• Believe them. Just because they “look fine” doesn’t mean they feel fine. Chronic illness fatigue is invisible but very real.

• Don’t pressure them to do more. If they say they’re too tired to go out, trust that they’re not being lazy—they’re genuinely exhausted.

• Offer practical help. Small gestures like cooking a meal, running an errand, or helping with household chores can make a huge difference.

• Be patient. Plans might get canceled at the last minute. It’s not personal—it’s just how unpredictable chronic illness can be.

Endometriosis fatigue is one thing, but when your immune system is completely out of whack, it’s a whole different struggle. I want to remind my fellow warriors: if your fatigue is getting worse, if you’re constantly sick, and if you just can’t seem to bounce back, please get your bloodwork checked.

We can’t fight endo, RA, and all these invisible battles without a functioning immune system. And if there’s one thing this experience has taught me, it’s that sometimes, we need to do more than just “push through. If you’re struggling, be kind to yourself. Rest when you need to. Don’t feel guilty for canceling plans. And most importantly, never let anyone make you feel like your exhaustion isn’t valid.

Have you experienced endometriosis fatigue? How do you explain it to others? Let’s start a conversation in the comments below.

Love and light,

Hlengz - The African Endo Warrior

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