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.

  1. 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.

  1. 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.
  2. 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.

  1. 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.

  1. 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?

  1. 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.

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121 Comments »

  1. Thank you for writing this. I have had Endo for 15 years and only diagnosed 3 years ago, having 4 surgeries and countless procedures since then.

    From 12/13 I was always very ill, bowel problems, bladder problems, back ache etc etc. but my main symptom as an early teen and through to my early 20’s was extreme fatigue. I was bed bound for months and months at a time and went long periods where I needed to use a wheelchair, crutches or walking frame. Doctors only ran a few tests before deciding I was depressed and I was almost put in a psychiatric home.

    My 3 initial surgeries only caused more pain, on the run up to my fourth I was completely bed bound and in more pain than I had ever been, going back and forth from the emergency room when I couldn’t manage anymore at home. My fourth surgery was with an Endo specialist (incredibly hard to find genuine specialists) who performed deep excision surgery. He removed 39 lesions that went from my lower pelvis up to my diaphragm. I’m now walking and starting back to work. Emotionally I’m still struggling, but for the most part my pain has gone, which I never thought would happen for me.

    For anyone reading this who is very ill I would strongly suggest looking into deep excision surgery with a skilled surgeon and researching how it’s different to other Endo surgeries where they use the ablation technique or remove organs. It has saved my life.

    Wish all you women love xx

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  2. Thanks for writing this, I’ve never had fatigue come on like it has this month. I’ve had endo and its symptoms for 7 years, got diagnosed last year. But this month, I’m just so exhausted and I got really worried. I’m glad to see it’s not just me and that I can try and push past this with the tips you’ve given 🙂
    So thank you!

    Liked by 2 people

  3. Hi I have endro. I am so tired all the time I have no social life. I go to work from 4 till 10 in the evenings and then I’m in bed the rest of the time.. I’m so fed up with my life… I have no life I find everything so hard. I have a very good husband who let’s me sleep when I want which is most of the time.. but I feel I neglect him.. he goes to work full time and he runs the house. Me, I feel I do nothing I try but I’m so so tired I’m waiting for a hysterectomy.. been waiting a long time… I just feel it would be easier if I wasn’t here. I feel so depressed about my life… I wish I could get excited about thongs bur I can’t… if my husband makes plans like going for a meal or shopping I get scared because I no I’m going be even more tired

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    • I understand exactly how you feel Tanya. Please research deep excision surgery with a skilled Endo surgeon. I had surgery with Dr Tamer Seckin and it has changed my life, his book ‘The Doctor Will See You Now’ is very informative. Unless you have adenomyosis as well as Endo then a hysterectomy is unlikely to help and can cause more pain. Endo lesions can be anywhere in your pelvis and sometimes all the way up to your diaphragm (was with me) so removing the uterus or even a full hysterectomy won’t help this pain. After a full hysterectomy you would need to be put on replacement hormone therapy which could actually fuel the Endo that is left in your body and cause more to grow.

      You can see my comment above of my own experience, if you’d like someone to talk to please email me at georgiewileman@gmail.com.

      I’m so sorry you feel this way, I’m doing loads better since my excision surgery in August but I still feel very down sometimes about everything that’s happened and what my partner and family have been through, the guilt can be very upsetting.

      G xx

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    • Hang in there hun. I have endo too. I have recently been diagnosed following 25 years of all of the classic symptoms. I even told the dr when i was 22 i thought i had it. I am nearly 41 now. I tried for years to have a baby. Even wasn’t picked up at fertility clinic. And no babies for me….something i desperately wanted my whole life. It has and still does cause me such sadness. We must stay strong and find a way to move forward through each day….hard as we know that is. The alternative for me is not an option. I fight everyday with my body to make it through. I also have Scoliosis and have had two major spinal surgeries with the insertion of a Harrington rod. My skeleton causes me much pain so double bubble for me. (Lucky is obviously my middle name) i have been treated for migraine for 14 years now. Since my laparoscopy it hasn’t been ad bad…..just one of the multitude of misdiagnoses i have received over the years. But such is life. For all my woes there are loads of people worse off. I get up every morning for them. Endo will not beat me….its my mantra. I tell myself all the time. Everytime i think I can’t do that today i make myself do it. To prove to myself that Endo will not win. I am bigger that the disease. Stay strong sweetpea. Big hugs xx

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  4. Thank you so much for this article. I’m twenty and have been dealing with endo-fatigue for a year now. I used to be really dynamic, always into a lot of different activities and running around and now even taking a shower or making myself something to eat is a challenge. I’ve been feeling extremely lonely because I feel like no one understands/believes my physical exaustion and it’s truly a struggle to keep up with my daily life. Your article has helped me feel a little bit less alone and a lot more understood. Thanks for sharing your experience.

    Liked by 1 person

  5. Thank you for this blog. I feel so guilty when im this exhausted. You explain the mental and physical parts so well. I am embarrassed a lot to even admit to people im tired cos they do all just think its down to laziness

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  6. So glad I found your article! I’m not sure if I have it. I’m 24 and since having my first periods (around age of 13) it has been a struggle. Once is struck me at school,during the lesson,teachers wouldn’t let me go home and was sitting ,meddling, with painful expression on my face, holding my stomach ,couldn’t get past the pain and the whole class was staring at me.
    Now it got worse. I usually have 2 hours of severe pains,really bad pains ,like someone is stabbing me in my belly and keeps turning a knife sideways,it comes in waves, I usually fall asleep after 1hour of pain and nausea. Worst thing is fatigue is getting worse,my blood is not good and I can’t go up the stairs sometimes. I live alone and have savings but now I must go look for a job but can’t , have no energy or motivation. GP prescribed me some mefenamic acid and contraception but I don’t have sex that often. My grades are going down. I don’t want to travel anymore, lost my friends and nobody understands it. Fatigue is really getting worse 😦 i went to work once,as usual, but then stood for a minute on my way to the by stop being unable to catch a breath , I had to sit down, so went straight home crying and feeling like crap. Before it lasted only 1 week before/after mens. Now it comes whenever it wants to,feels like you have a flu . No idea what is happening,going to doctors doesn’t help…

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  7. I found your article very helpful, i am 20 years old and i have been suffering with all the symptoms of endo since around about the age of 14, I’ve been to many different doctor since then but only recently have been taken seriously after breaking down crying because i know i needed help something just wasn’t right and i wasnt going away, im to tierd to leave my house most days witch has caused serious depression, only recently i have been refured to a gynecologist and go to see her at the start of next month, im a little scared of the out come but i just hope i can get some sort of help and have a fighting chance to feel better the i have these last few years,,, thank you girls for the info, its lovely to see woman supporting woman x

    Liked by 1 person

  8. Thank-you, thank-you, thank-you so much for this thoughtful, heartfelt and insightful article. What you wrote describes my situation to a tee – as it probably describes the situation for so many women with Endometriosis. It’s good to find articles that truly articulate the plight of women with this disease, especially because there is so much ignorance and lack of compassion surrounding Endometriosis.

    I, myself, blog about my experiences. I write Facebook pages about Endometriosis and living with it. I guess this gives me some sort of an outlet for all the feelings I have about the disease. Besides, when us women with Endometriosis take the trouble to write about our experiences, we are doing something very positive. We are spreading information about the disease and its symptoms. We are sharing our insights, and our coping strategies. We are able to provide advice about different types of treatment, or about how to get a diagnosis. Even if we are still suffering (because Endometriosis never seems easy to get rid of!), we can do something to reach out and help other women with this debilitating disorder.

    I totally get where you are coming from in respect of the fatigue that goes alongside Endometriosis. I totally appreciate your attempts to explain why Endometriosis makes women feel this way – a lot of what you write makes real sense. Personally, I believe that what makes Endometriosis so difficult to live with is other peoples’ attitudes to it. And that includes medical professionals. People can be so insensitive!

    I started with symptoms @ 2002, but did not get diagnosed with Endometriosis until 2011. That left me with NINE years of being fobbed off, lied to and ignored. Doctors are really pretty ignorant and uncaring when it comes to Endometriosis symptoms. They never seem to listen to you, and they just tackle each symptom individually, never linking anything up to come to the correct diagnosis. I had multiple symptoms including fatigue, nausea, bloating, menstrual cramping, heavy periods, irregular periods, flooding, blood clots in periods, painful ovulation, severe lower back pain, terrible pelvic pain, left hip pain, upset stomach… My G.P. (who, ironically, was a woman!) was absolutely useless. Sometimes I would see different G.P.s but this only made it worse, because each one had a different idea about my symptoms. I was told I had IBS, told I had possible food intolerances, diagnosed with Post Viral Fatigue Syndrome. I was told I was stressed, unable to conceive because of anxiety. I was told it was “all in my head”! They attempted to fob me off with antidepressants! During all this time, nobody thought to refer me to a Gynaecologist, despite the fact that I was regularly complaining about my menstrual cycle, and had Anaemia (for which I was being treated) due to heavy periods! I ask you – since when did stress, or anxiety, or food intolerances cause heavy periods and menstrual cramping?

    Finally, in 2006, I was referred to a Gynae (who was rubbish!). Again, I was misdiagnosed, this time with Polycystic Ovaries, which I actually had NONE of the symptoms of – except that a scan showed CHOCOLATE CYSTS (a symptom of Endo) on my ovaries! This Gynae did absolutely nothing for me other than ask me to attend a Polycystic Ovary clinic, where they did nothing other than weigh and measure you. The ONLY women who got “treatment” at this clinic were MORBIDLY OBESE women with PCOS who were given Metformin to reduce their weight. The gynaecologist never even appeared at the clinics, and usually I saw only locums. As I was not overweight, they did nothing for me. I even had one locum who suggested I had Endometriosis, but was ignored. Obviously, I demanded a second opinion with another medic, because staying at this clinic would mean never getting treated. I finally made a complaint about this Gynaecologist, only to be told that he had DIED of ALCOHOLIC LIVER FAILURE. It turned out that he had been running research into the weight loss effects of Metformin. I mean, honestly? Was he really bothered about Gynaecology? Or was he really just peddling “diet pills”?

    Meanwhile, I was referred to a Dietician (no use!), to a Gastro specialist (had endoscopy that showed I did not have Crohns, or Caeliac ) who said the problem was most likely OUTSIDE my bowel and suggested Endometriosis but was ignored, put on the Pill (which made me feel really ill), put on the Mirena (which slipped, and was agony, so got removed)… and just generally fobbed off from one person to the next. My boss at work (I worked at the same Hospital that had the terrible Gynaecologist, above) was deeply unsympathetic, and treated me like I was a hypochondriac or malingerer. He complained when I had to take time off work to attend medical appointments (even though this was necessary and unavoidable), threatened to put me on report, said “it’s only period pain”, told me to work through it by “taking an Aspirin”, and when I had time off work, he would phone me at home demanding to know when I was coming back in and telling me that I was “letting the team down”. You know the most shocking part of it all? My boss was a TRAINED NURSE! Talk about being in the wrong profession! Because, in HIS words, I “did not have a definitive diagnosis”, he refused to believe I was ill.

    I only got diagnosed after I googled Endometriosis online and took a printount of the symptoms to my G.P., then demanded a second opinion. In 2011 I had my first Lap surgery which went wrong (please, if you’re reading, DON’T accept treatment at Blackpool Hospital, as they are NOT qualified to treat Endometriosis). They did laser ablation and caused considerable scarring. They also tried to discharge me from Hospital whilst I was still nauseous and vomiting into a paper cup! After the surgery I was in screaming agony, and ended up at A&E THREE times because the pain was so bad I could not even move. My back felt all twisted up, I had muscle spasms in my hip, and my body would lock in position. I ended up on oral Morphine, plus crutches!

    I then did another google search, and discovered that Endometriosis specialists exist. It pays to do your homework! I demanded referral to one, and ended up having a further FOUR surgeries, including RADICAL EXCISION, It turned out I had Stage Four Endometriosis, with Deep Infiltrating Endometriosis that had grown inside my Uterosacral Ligaments. Deep Endo is a really bad thing if you get it – it’s harder to treat and causes really bad symptoms. It’s usually very difficult to locate too, so inexperienced Gynae surgeons may miss it.

    Believe me, I know all about pain, fatigue, nausea, upset stomach, period troubles! I also know much about the uncaring and unsympathetic attitudes that far too many ignorant people have in respect of Endometriosis. I know how hard it makes life. I know how much you have to fight for everything – even just to get people to believe you, and support you. I guess the way I got through it all was to be really stubborn. You need a LOT of determination to cope with Endometriosis (and with the crass attitudes of some people when you tell them you’ve got it!). Fortunately, I’m tougher than people believe. I’ve managed to complete a Postgraduate course whilst having multiple surgeries (I left work due to bullying – mostly related to my symptoms). Endometriosis IS NOT going to stop me!

    True, I miss activities I can no longer do – such as aerobics, mountain biking and horse riding. I know I am not as fit and toned as I used to be because strenuous exercise is painful in the extreme. I am sad about the fact that I have been diagnosed with infertility problems, so I’ll probably never have kids. I was in my late thirties when my Endo was finally diagnosed, and I was told I’d need IVF to conceive. Where I live, the cut off point for NHS funded IVF is 38-39 years, so by the time I had completed all my surgery, I had missed out. I think that this arbitrary cut off age for IVF is very unfair, as it does not take account of women who have problems such as Endometriosis and need diagnosis and treatment for this BEFORE they can even consider IVF. I am sad about the loss of some friends and family-members, who I choose no longer to see because they have been so insensitive and uncaring about my Endometriosis. For example, my own brother-in-law dismissed it as a “trivial illness” (he said this to me the day before I was due in Hospital for surgery)! Still, I can well do without such thoughtless, ignorant people in my life.

    Apologies for the very long reply, but I was really struck by your article. Women with Endometriosis and its symptoms need ways of reaching out and connecting with each-other, and people who write about Endo kick-start this. I hope that anyone reading my experiences, here, can find things to identify with, and can understand that they are not alone. I hope, too, that there may be tips that I have given which help. If you feel you are suffering from Endo:
    1. Keep a diary of symptoms, describing what they are and when they occur. Take this to medical appointments with you.
    2. Keep a record of all the treatments you try – what works and what doesn’t. Take this to appointments, too.
    3. Don’t feel coerced to accept treatment you don’t want. You know your body best. Choose a treatment that suits you, and your lifestyle.
    4. If referred to a Gyne, make sure this person is an Endometriosis Specialist. You can find a list of UK approved specialists at this website – bsge.org.uk/endometriosis-centres
    5. Research the illness – good support is available from charities such as Endometriosis UK who have a website (just type Endometriosis UK into a search engine), and helpline (0808 808 2227). Also, try searching Endometriosis Explained, Fighting Fatigue, Cure Endometriosis, Living With Endometriosis, and Endoresolved.

    Hoping some of this helps. Again, thanks for the article. Best wishes to all. E. x

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    • Thank you so much for your article, I was able to relate to it so mych. It’s such a huge relief to read about similar experiences, particularly when I feel so frustrated at myself for what can only be described as soul sucking exhaustion levels, to the point of being able to do nothing but stare at the ceiling whilst lying on my bed. I’m seeing gynae on Tuesday. X

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