Seven reasons why Endo-Fatigue causes so much trauma to its sufferers

Have you recently been tired? Have you recently been endo-tired? If yes, you’re very likely to know the difference. Explaining how you feel to the rest of the world is a different matter altogether.

“It can’t be endometriosis that’s making you feel so tired. Are you sure you don’t have cancer or something?”

“I’m too busy to ‘rest’ like you do.”

“I admit you’re not well, but stop ‘revelling’ in it.”

Renunciation and attack are common reactions. Onlookers simply refuse to believe that a person can be so excessively tired because of endometriosis, so they come up with alternative explanations: You’re lazy. You’re feigning it. You’re exaggerating it. You’re just feeling sorry for yourself. You don’t want to face up to your life. There must be something else wrong with you.

My experience has been that most people, including me, the sufferer, are, initially at any rate, unaware of this key, yet largely under-researched symptom.

“Google ‘endometriosis and fatigue’,” I now encourage my family and friends. The search brings up over 600,000 results. It’s not just ‘in my head’. The endo-fatigue is real.

One online source claims that “Grinding fatigue as severe as that experienced with advanced cancer is present in most cases.” It’s accepted that the reasons for this extreme exhaustion associated with the condition are still unknown. It might be the chronic pain, it might be a hormonal imbalance. More research is needed. More awareness would help.

What is endo-fatigue? Descriptions vary. For me, it’s the sensation of extreme physical and mental weariness that eclipses all other feelings and sensations. It involves:

• inability to overcome the fatigue by typical means (sleep, coffee, resting, ‘taking my mind of things’, meditation)
• heaviness of the mind, which is or very closely resembles a depressive state
• heaviness of the body; feeling as if physically ‘weighed down’
• sleepiness; headache-less like migraine; an impression of a partial brain shut-down
• difficulty to cope with the lightest of physical tasks or daily challenges
• inability to make plans due to unpredictable fluctuation in energy levels
• the feeling of being mentally overwhelmed
• the loss of joy at being involved in or wanting to be involved in favourite activities and hobbies
• feeling ‘isolated’ as if in a cocoon; self-focus
• helplessness to find a means of relief
• Endo-frown (see picture)

There are seven key reasons why Endo-Fatigue causes so much trauma to its sufferers:

1. CHRONIC PAIN: I’ve been in constant pain since December 2013. It’s a long time to be in pain. Trust me. The pain’s been varied in its nature and intensity, but it’s been constant. This pain takes over, it demands constant attention. It leaves little space for everything else in my life. It disrupts my sleep.

It’s thought that the body’s effort to deal with the condition ‘takes it out’ of you, leaving you feeling severely exhausted. The pain is also attributable to a less-than-perfect hormonal balance. Who really knows. At the moment, it seems that there are as many theories and speculations as there are answers.

2. DUAL NATURE OF EXHAUSTION: Endo-fatigue is not only a purely physical condition. The exhaustion is of the body and of the mind. A double whammy if you like. It’s precious little anybody can do about such an assault on their well-being.

At the depths of my condition, when I was so tired, lying down seemed like hard work (imagine that), I couldn’t use my body to get over the mental exhaustion and couldn’t use my mind to get over the bodily fatigue.

In the past, I’d go for a run to get over the daily frustrations. I’d also be able to think up ways to overcome physical exhaustion (go on holidays, read, have a nice bath). I was able to ‘fight’ it.

These outlets, that are designed to relieve mental and physical exhaustion, are not that readily to those with endometriosis. I’m so tired I don’t have any fight left in me.

Even a bath requires planning. Holidays are out of the question. One failed attempt at ‘getting away from it all’ left me in pain, as any instance of ‘overdoing it’ fuelled the pain, and then the pain fuelled the exhaustion. This vicious circle of pain and exhaustion is what makes endo-fatigue so hard to overcome.

3. LOSING IDENTITY: There’s a sadness to the enforced change of lifestyle that endometriosis so often involves. I used to run; I particularly enjoyed endurance events such as Tough Mudder. The worsening of my condition meant that one day this tough, driven, hardworking outgoing girl was suddenly metamorphosed into a crying heap of helplessness. I didn’t know who I was anymore. My fitness friends were no longer around and I missed their social interaction. I was also unable to work and it’s only when our ability to work is taken away from us do we realise how important work is to our sense of self.
4. ISOLATION: At the time when my endo-fatigue was at its worst, writing a blog, or finding some other way to communicate with the outside world about how I was feeling, and trying to make sense out of it all, was simply beyond me. I couldn’t ask my family and friends for support.

I was too exhausted to investigate the ways of making peace with my incurable disease and, crucially, finding, if not answers, hope. My mind was closed to the possibility of change, even if the change was to be for the better.

5. CONFUSION: It’s obvious from the most cursory of glances at the numerous endometriosis forums that there are many women who are very confused about their condition, their symptoms, and what precisely it means for them. The symptoms are varied and the permutations of how the disease manifests itself multiple.

The (initial) lack of awareness adds an additional complexity. I was diagnosed with Stage III Endometriosis in June 2014, and nobody really explained to me what the condition involved. The focus of the surgeon was on the physical symptoms, the seven and three centimetre cysts on my ovaries. I wasn’t prepared for the mental and physical trauma of the fatigue that followed the first laparoscopy procedure. I didn’t understand what was happening to me. This made me feel scared, isolated, confused and anxious.

6. FEELING MISUDERSTOOD: I assumed that the doctors knew about how I was feeling and the symptoms I was experiencing. Wrong. You have to spell it out to them. Even then, there’s the risk that they won’t believe you and won’t treat you seriously. Frequently, they don’t. This constant need to fight the system and to explain myself to the doctors, friends and family has been energy sapping in itself. I doubted myself when my symptoms were so easily dismissed by those very people who should be looking after my interest.

GPs are notorious for either ignoring or downplaying the symptoms. I’d been to my GP numerous times before my diagnosis; all the symptoms were there: extremely painful periods, exhaustion, low mood. My GP looked at each in complete isolation and treated neither with any gravity.

“I’m just so very tired. Why? Why am I so tired?” I complained during yet another visit.

“Just get some rest and take it easy,” came the reply. (See my list of Endo-Fatigue symptoms listed above)

Three months following my first operation involved a lot of ‘resting and taking it easy’, and yet, for most of that time I felt was what Mills and Vernon in their book ‘Endometriosis, A Key to Healing And Fertility Through Nutrition’ describe thus: “Women often talk about being too drained to even talk to someone on the phone, and just wanting to curl up in a heap and sleep, until they feel well again.”

Needless to say, I’ve looked for another doctor who was more sympathetic to my plight, but it takes energy to make that decision. See where I’m going with this?

7. FEARING FOR THE FUTURE: Endo-fatigue makes sustaining a professional career difficult. How on earth am I meant to find sufficient physical strength to leave the house to even get to work? How am I to muster sufficient sustained mental effort to be productive? How am I meant to drag myself away from the transcendent overwhelming mental fog to interact with people?

Endo-fatigues makes even one out of these three seem impossible. Not difficult. IMPOSSIBLE.

Healthy people have a certain amount of restlessness that motivates them to get on with their lives, to achieve something, to have goals and to aspire to being more than they are right now. This drive is what makes us make and keep friends, helps us succeed in our careers, and defines our pastimes.

Endo-fatigue took all of that away from me. It left me stripped of any aspiration. There may be a vague recollection of what I once was, but the overwhelming feeling is that of sheer wonder as to how I’m expected to just survive the day, in which there’s nothing to achieve other than getting from its beginning to its end.