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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134 Comments »

  1. Thank you for writing this, although I don’t suspect endometriosis in myself, my fourteen year old is dealing with it and the accompanied fatigue. It is difficult as a 14 year old to explain to a teacher why you weren’t in class for their class time but were able to make it to several other classes and you went to an extra curricular activity that same day! I try to keep things as normal for her as possible, waking her up early enough so that she can slowly arise, get ready and take meds(if needed) but late enough that she can sleep as much as possible. Trying my darndest to get her to first period which is gym class (she likes it 1st period) but not always succeeding, I take my cues from her. I try to watch for “normal” teen behavior (that must be molded, shaped and disciplined) vs. behavior of a person with a chronic illness/fatigue that needs compassion and care. It is a fine line I walk! Sometimes I feel like I am the biggest jerk making her go to school, “Just get to school and try, call me and I’ll pick you up if you really can’t hack it, but just try!”. Many times I pick her up at lunch time, she eats at home and takes some medicine while laying on a heating pad and then her dad takes her back to school after his lunch hour. She’s usually then late for the period immediately following lunch but she’s able to finish the day and may even be able to go to her extracurricular activity/sport after school. This is so beyond normal for a 14 year old, teachers, family members, friends and acquaintances don’t understand! Somebody actually mentioned to her dad “geez, she’s missing a whole lot of school!?!?” He really didn’t know what to say to that, was this person fishing for more info, were they implying that he should do something about it; put his foot down and make her go to school or were they just expressing concern (not very appropriately). It’s hard to say what they meant by it. Anyway, thanks for the article, although it wasn’t an eyeopener for me, hopefully it will be to someone who doesn’t understand why their daughter, wife, student, etc. (or themselves) isn’t able to do all the things they should.

    Liked by 2 people

    • Hi ! I found your blog looking for information about endometriosis and chronic fatigue. I am French, and there seems to be no research done about the link beetween endometriosis and fatigue, at least in my country. How are you feeling now? Did you find a way to feel less tired ? (nutrition, surgery… ?)
      Thank you.
      Pauline

      Liked by 1 person

    • I cried when I read this. I’ve never been able to express what I feel as adequately as this article does. I no longer feel like I am alone in this.

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      • That was exactly my reaction Carla. There are so many women struggling wth endo and the impact it has on our lives, yet so often it makes you feel so isolated and alone. You are not alone, big hug x

        Liked by 1 person

    • I suffer from endo as well. I already had one surgery about 3 yrs ago and now it seems to be back. I feel so tired al the time, I just want to sleep and the pain is back, but not as bad as the first time around. I just wish they would find a cure for this. I need to be more active with this movement that many women suffer from.

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    • Hi there, ive suffered with this too, since the age of 14. I have very recently started a nutritional plan which is slowly but surely beginning to bring some relief, both in terms of less pain and increased energy levels. I really recommend this to your daughter. The nutritional plan and lots of information can be found in the book by Dian Shepperson Mills and Michael Vernon. I am turning 40 soon and ive only just discovered that there is something that i can do to help myself! Ive also realised that the pain and tiredness i experience is not normal and not to be accepted! I feel sad to have wasted a lot of years when i could have done something to help myself, but im also excited at the thought of what i can do in the future, with less pain, more energy and more life to enjoy!!
      I really hope this helps! I want to wish your daughter the very best, and I want to encourage you and say what a fantastic mum you are, in understanding and supporting your daughter.

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  2. Even though I do not have endometriosis, I have Fibromyalgia.
    I have this same fatigue! I hate it more than the pain. Alot of the time it slows me way down. Sometimes I just have to sleep.
    I have stopped trying to explain. I even stopped talking about it. People do not like the words pain and fatigue. So I just don’t speak of it. Thanks so much for writing this.

    Liked by 1 person

  3. I have endometriosis and multiple sclerosis. They both come with fatigue, and it’s a very similar kind of fatigue, though I can usually tell them apart. I think it has to do with the fact that they’re both inflammatory conditions. Inflammation usually causes fatigue and low mood.
    Anyway, people don’t seem to understand how drained and run down we can get. Fatigue is the most common symptom in MS and also reported as one of the most debilitating. Yet, even after showing this to my ex-boyfriend, he still accused me of being over dramatic and trying to get attention. It just makes me sad.

    Liked by 1 person

    • Escharae, thank you for your comment. It’s interesting that you mention the inflammation as the cause of fatigue and low mood. A great contribution. I’m sorry to hear that you found you weren’t understood. It happened to me too and it’s hard to deal with. My thoughts are with you.

      Liked by 1 person

      • Omg my stupid boyfriend thinks the same way, i tell him if u had the pain i get u wouldn’t be saying that. Am so drained cuz of the pain but no one understand because they don’t go through what we do. N it sucks😯

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  4. I know what endometriosis as I had it for years undiagnosed. The last six months before I turned 45 years I was taking 2 aspirin every 8 hours and had a hot pad on my stomach. They went into tied my tubes and took everything as they found endometriosis,cysts on right ovary, and fibroid tumors in the uterus.
    BTW, I call them “HEAT FLASHES”😦 and as you get older they are “Night sweats”😁
    Anyone with it has my severe condolences.

    Liked by 1 person

  5. Thank you! I connect with this story because of my Endometriosis. Coincidentally, my symptoms started draining me and everything I’ve worked so hard for in December 2013. I had a hard time getting doctors to listen and look further than the common thought and still do. Since my lap and diagnosis the symptoms in which I suffer from have mostly increased and a few other things seemed to have jumped onboard. I struggle to work and to believe in my symptoms myself due to the guilt and Inability of others to understand. I am lucky to have a job that supports my struggle at this time but if treatments continue to fail or only make things worse. I’m not sure how much longer me or my job can accommodate this disease. All we can do is create more awareness, so thank you.

    Liked by 1 person

  6. I have very painful periods that keep me bent over a toilet two days out of every month and keep me bedridden for 5. The flow is grotesque. I am chronically tired and the pain day to day is so wide spread. I have 2 young children and I feel like am awful mom. I have discussed this with numerous obgyns and the last one said it’s Endo. I asked how she knew without testing me and she said regardless of the fact she wants me on depro lupron. I refused and went to see my primary. explained to her that I did not want meds without first being tested for sure. I was pretty much told to deal with the pain. should I just go in the meds or seek out yet another opinion in the hopes that somebody somewhere will actually take me seriously enough to check me out and treat me accordingly?

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    • Kathy, first of all you’re not an awful mom. You’re doing the best you can in the circumstances. It must be hard for you, no doubt. You’re doing great. Secondly, it’s always fine to seek a second (or even third) opinion. I read that it takes on average 7.5 years for the diagnosis. I lived with the condition and the pain for years without an official and firm diagnosis. Be strong. Be firm. And be kind to yourself. I hope you’ll find a sympathetic ear of a medical doctor who’ll be able to be more clear about how you’re feeling, and why and what to do about it soon.

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    • Do not go on anything until you’ve had a lap. After that, DO NOT go on Depo Lupron. It is awful. I was sick for 1 year, and have never really recovered after getting the Lupron injection. Nausea, hot flashes, night sweats, headaches, exhaustion in addition to that which I had already been dealing with, and severe mood swings were among the many effects. You cannot be diagnosed without a lap. Find new doctors. Neither of them are competent enough for you. You need to see someone who knows more about endometriosis. A fertility specialist is usually the best option. If your insurance doesn’t cover fertility, you can usually still see one if it is for a medical need like endo. It may take a while to find someone who can and will help you. Insist on the best care possible. It takes time, but it is important for you to understand your choices and their long term impact. Best of luck to you.

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      • Ellen, that sounds awful. I hear you. I was diagnosed after an MRI and a CT scan – you just couldn’t miss those endometrial chocolate cysts! The side effects I had sound very similar to yours. Harsh! Thank you for your good wishes. All the best to you too.

        Liked by 1 person

      • Hi I had a lap and it made my symptoms way worse. I am on prostab injections a form of lupreon. I think its brilliant. However this week I’m very emotional but I’m stressed with work. I think the injections are brilliant for me personally.

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      • The drug Visanne was a disaster for me. I was placed on it after my first laparoscopy. It didn’t work to suppress my endometriosis at all – it actually continued to spread while on Visanne and I am awaiting a second surgery as a result. My migraines were also significantly worse when on Visanne – I suffered for 1.5 years of a daily migraine which would begin shortly after I took the pill.

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    • Don’t use Lupron please! Do your research on that nasty drug first. It was created to treat prostate cancer, not endo. It has long term damage to your body. Never let a doctor give you meds (like that without a diagnosis). You need laparoscopic surgery (the only accepted form of treatment). Don’t let them patronize you by sticking you with Lupron and calling it good. Doctors frustrate me so badly. Muck love fellow warrior 💛

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  7. My daughter has been fighting her battle for 16 years as a mother I want to fix her . Not the appropriate thing to say. Her doctors give up and don’t listen to her.She has had 4 surgeries. Lost 1 job and struggles to keep the job she has now. Tonight she told me she wishes she had cancer because people understand that and are able to treat it. If anyone has suggestions for pain relief and fatigue please share.

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    • I had to go to another practice to find a doctor willing to work WITH me. Not to tell me what to do, but to explore options and discuss them. After 10 surgeries with my first doc, this doctor LISTENS to me, and has only performed 3 more (and one of them was a revision of incision). I get nerve block injections every two weeks, pain meds, and continuous birth control to control the pain, bc I can’t afford excision surgery by an endo specialist at this point. While it was one of the hardest things I’ve ever done (finding a new gyn), I think just his outlook on patient care helped me.

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    • It sounds harsh right off the bat but narcotics are now the only thing that come close to helping my pain. At least with the oxycodone i can have somewhat of a normal life. Sucks thats the answer being im only 21 but hey if it works why mess with it? Endo has taken everything from me including my military career which i loved more than anything.

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    • Sugar is a quick fix and might serve as a pick me up if you’re blood pressure is low. However, it’s do important to eat healthy too as you’re body needs nutrients. If you learn how to schieve a healthy balance, let me know!

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  8. Wow it was like I was meant to read this article today. I was also diagnosed with stage 3 endometriosis June 2014 and had my first lap in Sept 2014. I was just thinking last night; I’m so tired- I don’t have the energy to fight anymore. Lately I only leave my house about once a week and when I finally start to fall asleep I have to get up and pee bc my IC is so bad. Thank you endo haha. But it’s so nice to know I’m not alone and I can have my family read this. Even though my husband is my biggest supporter he doesn’t understand why I’m so tired when I don’t do “anything” during the day. But I am I’m fighting and I have a 2 almost 3 year old and she’s very active. Thank you for writing this!!

    Liked by 1 person

  9. I’ve seen my wife suffer from this. And I do all I can to pick up the slack when she needs to rest. But when she can sleep for 17 hours, get up and go see a movie with a friend, then come back and sleep all night and all day again… yes, I have a problem with that. I have a problem with someone who sleeps all day, and then watches netflix till 1am. We have 2 kids, and I work full-time while my wife sleeps. Plus I do just as much housework and spend just as much time with the kids. I’m tired too. I want to rest also. My wife went out with friends twice last week, and then slept the rest of the time. We want to support the women we love. But I definitely have problems with someone who has no energy for their family, but magically pulls it together to go out with friends.

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    • Hi Chris, it’s difficult to comment without knowing your circumstances. I can’t remember last time I stayed up beyond 10 and partying or even socialising is not on my agenda at the moment. I think it’s something you as a couple need to discuss. If you feel you need to understand better how she feels, ask her. I’m sorry to hear life’s hard for you at the moment.

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    • I would be upset too Chris. My husband works 55-60 hours a week and only gets about 6 hours of sleep at night so as tired as I am I know he’s exhausted too but does it without complaining. You should talk to your wife. I can see her needing to get out to go to a movie maybe once a month. I see my best friends maybe once every 2-3 months. I never sleep for 17 hours at a time. My body hurts to much to do that. I do stay up late and watch Netflix sometimes until 4 am but I get up with my daughter at 9 or 10. On the days that my body just can’t do anything I don’t clean much or cook much and I usually feel quilt for having to ask my husband to help. Is your wife depressed? My sister used to sleep like that and she is bipolar. Do you have a support system?

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  10. Thank you so much! This helped me make sense of things. My Dr is having the most difficult time trying to help me, its to a point that nothing does the trick. After my most recent surgery June of 2014. Having to have my left ovary and fallopian tube removed and only to find out the endometriosis was back with a vengeance. To also find out my adenomyosis also is in a constant state of flare up, it all feels so hopeless. Trying to explain to my 8 year old daughter why I’m so tired all the time, no matter what I do my energy is constantly sapped. Day to day is tough. I have no answers any where I look and deal with this on my own. Its been tough having to live this and no one understands. So again, thank you for shining a light on what else Endo can do that no one seems to explain.

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  11. i so feel like this in last few months (suspected for endometriosis and/or adenomyosis with confirmed hematometra (aka blood filled uterus) also to top this all off i got hormone issue called empty sella syndrome (issue with how the pituitary gland hypothalamus gland and ovaries “chat/send” messages to one another)…..

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  12. Thank you for writing this! I have been struggling with the fatigue aspect really intensely and struggling so much! This made me feel like I’m not alone and not crazy!

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  13. Erm… I seem to be the only one mentioning that there is no picture of the endo-frown? It says “(see picture)”, but there’s no picture or link to one anywhere on this page.

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  14. Great article but I was disappointed that there weren’t any suggestions on how to deal with the chronic fatigue?

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  15. Thank you for writing this. My ex- girlfriend had endo and it seems to be coming back. I wasn’t there for her when she needed me, I didn’t really know what endo was. Only wish I’d seen this sooner. It all makes sense now.

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  16. In the ’70s before endometriosis was well know as it is now, I was going to doctor after doctor complaining and wanting a hysterectomy. When they refused, I went to another doctor. Probably 12 doctors over 20 years. I didn’t know what was wrong with me, I only knew I was very sick. In 1991 I totally over it. I was not going to live this way any longer. I had no good days. I was sick all of the time every day with things relating to my period and the endometriosis. I threatened my doctor to either do something or I was going to find someone who will. He did a biopsy and it came back with the endometrial diagnosis. On my birthday I went into surgery. It was the best present I could ever get. From that day forward I was a new person and was able to do more then I had my whole life, until in 2011 I was diagnosed with endometrial adenocarcinoma. Endometrial cancer on the vaginal cuff. Now in May of 2015 I am still alive but I have gone through radiation and chemotherapy. I am very sick every day and it is inoperable. I am living proof that this is not something to take lightly. If you suspect that you have this problem take a proactive stance and get it taken care of. Don’t put it off. It is only going to get worse, and like my case, it could kill you.

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  17. Thank you for the article! I just had my laparoscopic surgery last Monday, and after years of no one ever figuring out my problem, my obgyn found endometriosis. I know it’s terrible, but I was relieved to finally have SOME kind of answer. I honestly kept going to GI doctors because I was sure I was having intestinal and stomach problems. They did find ulcers, but the past year I was starting to hurt so bad all I could literally do was go to work and then fall on the couch when I got home. I’ve been too scared to go out to eat, can’t hang out with my friends or even go on a date with my husband. I’ve honestly had moments when I just wanted it to end … 😥 Have any of you experienced stomach-related issues with endometriosis as well? Also, I know it’s only been a week, but I’ve been hurting so bad after surgery I can hardly sleep … I guess it’s no different than before the surgery. Lol. Was this normal for you all as well? How long does it take to feel better? The doctor told my husband she found a lot that she had to remove, so it may be typical to take a couple weeks to heal from that? Also, does anyone recommend hysterectomy as I was told that’s really the only cure? I’m really hoping I start feeling better as I heal … I honestly don’t know if I have the strength to keep fighting the pain. 😦 Thanks for your help! 🙂

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    • Endo can definitely cause GI issues. Nausea/vomiting/bloating, etc. I finally found a GI that diagnosed me with Gastroparesis after years of voniting attacks that only ER intervention/IV meds could stop. If Endo is on your stomach or intestines, that could be causing GI issues as well. That’s why excision surgery with an Endo specialist is so important. So they get all the pieces from your intestines and other organs.
      Hysterectomy is NOT a cure for Endo. Please don’t believe any doctor that tells you that. There is no cure unfortunately. Hysty can make things worse in a lot of women with Endo and it won’t stop the growth. Endo can make its own estrogen. No ovaries needed.

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  18. This article validated what I have been going through. It was like I was reading my own thoughts. I am sorry to you or anyone else who suffers from endometriosis. I am 35 years old and have had a complete hysterectomy over 3 surgerys when I was 29. Since then I have been on estrogen to help manage the side effects but since the end of 2013 I have been experiencing extreme pain and am unable to work as well. The doctor I am seeing took me off of estrogen and put me on progesterone in hopes that it will reverse the effects. So I just wait. Feeling more and more helpless. Fighting with doctors over pain pills and insurance companies over whether they think they are going to pay me or not,Medical offices with FMLA/short term disability paper work. I don’t know how much longer I can do it. This is obviously something that is not going away. Any advise on how to deal with insurance companies or how to get a doctor to continue to help with pain pills? Pain remedies other than pills??? I just need to talk to someone who has gone through what I have. Thanks for listening!

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  19. thank you so much. this describes my life for at least 10 years. i was recently diagnosed with pcos and endo. thank you for your words and kindness.

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  20. More people need to have an understanding of how hard it is for us on a daily basis.

    A lot of my friends think I am anti social. I just like to be in my own comforts where I can stay comfortable but they don’t get it. Even sometimes my boyfriend complains that I don’t do anything with my friends or see them and that I am becoming anti-social.
    Those words don’t hurt my feelings because I have a valuable reason why I am no longer the energetic/sociable girl I used to be. Endometriosis has completely changed my life and work.
    There is nothing I can do to change the way I am the only thing that can be done is to not let it ruin me.

    Thank you for this blog its nice to see I am not alone x

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  21. Thank you so much for this article. It is a relief to know someone knows and understands.
    I have been struggling with excruciating fatigue for four years now and was diagnosed with endometriosis April 2015. I too used to be very physically active, running most days, walking miles with the dog and now the thought of some simple yoga stretches is exhausting. The doctors seem to think now I have a diagnosis that’s it: have the coil and if that doesn’t work have an operation! The consultant and GP do not seem to recognise fatigue as a symptom?! I have gone from full time work to 9 hours a week and when I get in in the afternoon after being at work I’m done for the day. So family life suffers but I try to battle on…
    Thank you again.

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  22. I had surgery for endo about 6 years ago. I have never been the same. I am on birth control pills that completely take care of the pain… but could I still be experiencing endo fatigue? I have been going in circles for years trying got figure out why I am so easily overwhelmed, why I have trouble experiencing any joy, why I get sick so often. Because I don’t experience pain anymore (unless I go off the pill which I will never do again) I kind of put the endo out of my mind…

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    • Out of curiousity have you heard of taken folic acid and eating a wheat free diet? I used to get sick all the time and never understood why. My doctor explained that there was a correlation between my weak immune system and the disease. Ever since doing this my immune health has drastically improved.

      Liked by 1 person

    • Hi, please keep in mind – the pill masks your pain, endo is still growing – as long as you keep having periods your endo is growing – don;t be fooled
      regards

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      • I wouldn’t say I am being fooled. I am just saying I am not in pain when I am on the pill. I know it is a bandaid, not a solution. But I will take the bandaid for now.

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  23. Really great blog. Today I’m feeling that endo fatigue bad. Before my first laparscopy and with how much pain I was in, it really tested my sanity. It’s amazing how one disease like this can be responsible for so much. Luckily I found the best gyno in the state who was sympathetic and told me about folic acid and a glutten free diet. While I don’t get as sick anymore there is no end to the pain. It gets so exhausting and so hard to keep fighting. What I found so great about this blog entry was the ability to relate. I’ve always been a “sleepy” or “depressed” person just didn’t realize this could be a big factor to this. I was diagnosed August 2015 immediately after the procedure I asked myself, why did I do this? The recovery was almost as bad as the pain I was already in and took over a month. I’m supposed to get more since they couldn’t remove all. But with how expensive this was and how I felt during I’m choosing to just live with it. My only option at this point anyways. They never officially told me which stage I have only that I was the worst they had ever seen.

    Like

  24. My daughter is 11 years old and I think she has endometriosis. She has had abdominal pain since kindergarten, and it has become increasingly worse over the years. We went the gastrointestinal route and of course they diagnosed her with IBS even though she wasn’t constipated or suffering with diarrhea. She’s had blood work, stool tests, x-rays, an endoscopy, ultrasounds, and a CT scan all of which came back normal. We had her tested for celiac and even did elimination diets and that did not make a difference. Last year in 5th grade her pain became cyclical for three months in a row and also coincided with my menstral cycle. So we went to a pediatric gynecologist and he wasn’t much help. He didn’t think it could be endo because he never heard of anyone that young having it. She got her period this past November and had pain the whole time and even gets the pain the week of ovulation. Right now she is sleeping even though she slept all night long. My heart is breaking for her and I wish it was me suffering. I just want to find a doctor who will listen and be able to help. We’ve tried chiropractors, supplements and an acupuncturist and nothing helps at all. We had to pull her out of school because she missed so much and the school would legally have to label her truant since we have no official diagnosis. She is doing online schooling but even that is difficult due to the pain. If you have any advice or doctor recommendations, that would be so very much appreciated. All of you who are suffering are in my prayers. Thank you!

    Like

  25. This is so spot on. Thank you for writing this and letting me know I’m not losing my mind. I’m having surgery next week after undergoing six months of shots of lupron depot, which were unsuccessful (they said they usually work in everyone, I always seem to be the exception). As far as your recovery went…it was long and rough?

    Like

  26. When I was reading your article I saw myself there. It is the exact account of my life. So true! Basic things such as socializing is so hard. I used to think I had some psychological impediment or anxiety. I have lost contact with people I used to do things with and it is hard to make friends. I often feel that people would find me boring or “no fun”. What pains me more is the fact I used to be so motivated in my career and had lots of fun learning new things but now I find that hard work and tiring. In reading more about experiences like yours and sharing issues with other women make me realize that I have to be more understanding with myself and stop feeling that I am a failure. Thank you for sharing this experience as it makes me feel that I am not on my own. It makes me feel human again!

    Like

    • OhLaura, you’re ill, not a failure. The only thing you can do is to try your best. Just remember that your ‘best’ will look very differently from day to day, hour to hour, moment to moment. And it will look differently to others’ best so don’t compare yourself to others.

      So be kind to yourself.

      Like

  27. Hi. I’m a 16 years old. I’ve been experiencing severe menstrual cramps for more than 2 years. No one understood my pain. sometimes i felt i would die because of the severe menstrual cramps. My family said it was only a normal pain till last month where i vomitted and had to take 2 injection to stop my menstrual cramps at a local clinic.

    Then I go to know that I have endometriosis. These past few days, I’m tired no matter what i do. I’m the type of person who doesn’t sleep a lot. sleeping 3 or 4 hours can make me survive for the whole day. But now it’s not. I always feel tired and sleepy. I tend to sleep without realizing it myself. Can some of you share tips on how to survive ? For now, my consulting doctor has given me pills for 3 months. ive to eat it 21 days straight and have 7 days break. And repeat it for 3 months. Would the medicine work?

    I also read in the internet that endometriosis is highly linked to coronary heart disease. is that true?

    Like

  28. Did you ever get your energy/ life back after surgery? Did you have excision or ablation? Hysterectomy with or without ovaries? I’m hoping there’s hope for me after surgery scheduled in September.

    Like

    • I never got energy back after surgery. My body has been kuput ever since the Endo started. I think the surgery may have even made the fatigue worse. I had excision both times. Burning it off does jack. Excision may exacerbate the fatigue but it really should help immensely with the pain.

      Like

  29. I honestly believe that we may be genetically predisposed to having endo (abnormal estrogen reaction?); however, I think that endo. symptoms are exacerbated by something in our diet (some chemical, growth hormone, gmosetc.). Not enough research is being done for endo and women who have stages three and four should receive some form of disability because endo is a serious disease. For women trying to conceive, it’s almost as if the IVF and fertility industry is booming business. It’s less about helping you have baby and more about the almighty dollar. In the medical world, IVF is treated similarly to getting a boob job, as though women with infertility are seeking cosmetic surgery and the clinic is doing you a huge favor when we have squeezed our finances to pay $20,000. My advice to young couples with endo is start trying to conceive now. Endo spreads throughout your body as time goes on which presents fertility problems in the future. Get control of your diet now; eat with caution: no dairy, red meat, gluten, low wheat, low carbs, take a multivitamin, obtain a healthy weight and exercise for at least 30 minutes a day. Eat fruits, vegetables, poultry and fish. Walk as much as you can and do gentle pelvic stretches and massages. Some doctors truly care, but they are few and far between. Take control of your health until a strong movement comes along for endo research and a cure.

    Like

    • EAT ORGANIC AS MUCH AS POSSIBLE AND AVOID EATING OUT AS MUCH AS POSSIBLE. I found out I had endo when I was 16. If the doctor had given me this advice then, who knows what my life would have been like now.

      Like

  30. This! This is my life…I don’t think you could have said it any better!
    “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.”

    Like

  31. I’m literally crying while reading this. I don’t feel crazy and I feel less confused about how I’ve been feeling. Tired all the time mentally and physically. Not wanting to plan anything because I know there’s a 90% chance I will be tired or just not wanting to be around anyone. I feel just physically weighed down. I’ve told my husband that I feel like my feet are bricks and it takes so much effort just to move them. I have always felt my doctors just aren’t listening to me or believe me and kind of brush it off. I recently felt like they finally heard me. They said I’ve been on every pull, IUD, lap, etc. I’ve done everything I could as a patient and it’s time for a hysterectomy. My husband is a doctor and so understanding. I am so very lucky. He’s been telling me for years that I’m going to have to have this done. I am scheduled for surgery in 6 days. I’m scared and happy. I hope this will help me. I really wish it would help with my anxiety and depression. But not sure if that is going to happen. I hate feeling depressed, I’m actually very happy. I have an awesome husband, two beautiful, wonderful girls, we have a successful business and a nice house. I hate not feeling happy because deep down I really am and I feel very fortunate to have the life I have. I just wished my brain knew it. I’m sorry for the ramble but I can’t thank you enough for this article. It kind of put everything into perspective and I know I’m not alone after all. Thank you.

    Like

  32. Can i ask a question. I had Endometriosis over 20 years ago, and at that time I was just being fobbed off (as a teen) as milking it (my periods), even though my mum had been diagnosed and had a hysterectomy as a result.

    Later on (when I was 21 and just after the birth of my Son) I was tested and diagnosed with it and told that if I had not managed to get pregnant when I did that I would more than likely never have been able to naturally. and whilst being starved for 9 months due to pregnancy it came back and caused all sorts of problems with my recovery of my C Section.

    I was in a trail for treatment I can’t remember the name of the treatment though (1 injection into my abdomen a month for 6 months, this was a really fat needle that has left scars and it made me go through the menopause or a fake drug induced one at the time) for me it cleared up at the end of this.

    I do suffer from most of the above symptoms (but luckily not the pain part), and I am often classed as lazy.

    Is it possible that this is related?

    Like

    • Hi, thanks for your comment. The injection you’re referring to is probably Zoladex or Lupron. Very painful. I had terrible side effects when I was on it. Some people though react well as it has a positive effect on their pain. Does it answer you question? Sorry to hear the journey has been difficult for you.

      Like

      • Zoladex that was it….. It was one of the worst experiences of my life….. Thank you for reminding me what it is called.

        Not really i’m afraid…. I have been led to believe that I no longer have Endometriosis and I have had more children after my first one.

        Could I still have this and just not have the pain part any more then?

        I suffer lots with fatigue and there are days I cant even get out of bed, I also get really low.

        Like

  33. No, I have not been under any consultant care since I had the injections and my pain subsided, they just told me I was cured and that was that.

    (sorry I cant reply directly to your comment).

    Like

      • Thank you, I had a feeling you were going to say that. Sigh

        And from your article so many things in my life make sense. Just did not know if I was clutching at straws as to if this was what I am still going through or if I was just making it up in my mind.

        xxx

        Like

  34. Hi there . Just came across your blog and thought maybe you could help me.
    I’m 21 and I’ve been dealing with endo. Since I was in the 8th grade. This past January I finally had surgery ! I’ve been on lupron and now on the pill. My periods are so much better and I’m not in much pain as before. But I’m still worn out all of the time. I don’t feel myself on certain day ( about 3 days at a time ) and then I’ll feel fine again . The fatigue is real during those days , I feel like I’m in a haze and the littlest task seem major.
    I don’t know if I should contribute this to having endometreosis or something else. I’ve always felt this way , since the 8th grade but I thought that now my pain is bether – the fatigue would go away .

    Please help! Thank you.

    Like

    • Hi Maci, I’m sorry to hear life is hard for you. How long ago did you come off Lupron? It took me personally a long time to get to something that resembled the pre-Lupron energy levels.

      First of all, take care of yourself. You’ve been through the mill what with the operation and the drug treatment.

      Secondly, consider if there’s anything else that can affect your energy levels. Even mild depression can cause a person to feel rotten and tired. So can thyroid issues. Similarly low iron levels. Speak to your GP. Get tested.

      I found that the mental aspects of endo are so often neglected when compared to the physical symptoms.
      You’re not alone. Find people you can confide in. You’re not weak…. Just ill… You’re not a failure…. Just recuperating. You’re ‘just’ living with a chronic illness.

      Do your best but remember your best will vary day-to-day and minute-to-minute.

      Take care of yourself.

      Like

  35. I had to cry whilst reading this article, finally someone who sums it up perfectly and who understands the way I have been feeling for such a long time, struggling wth the chronic pain and utter exhaustion. Thank you so much for making me feel less alone!

    Liked by 1 person

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