One of endometriosis’ worst symptoms sort of sneaks up on you. When you’re diagnosed, you’re generally aware of the biggest problem you’re likely to have to get used to (the pain). As that’s the problem that’s led you to the doctor or consultant.
Months after you’ve started to get used to chronic pains effect on your body, another handicap rolls in. The exhausting shadow that is chronic fatigue.
What chronic fatigue is
- Long term exhaustion not fixed by periods of rest or sleep
- Your body feels like it has finite amount of energy which can grow or shrink day by day
- Exhaustion on delay (tiredness hours or days after you’ve done an activity, rather than straight afterwards)
It can’t be fixed by
- A good nights sleep (or several weeks sleep)
- A holiday
- Taking your mind off things
This long term fatigue can also mean
- You forget things, such as what you were doing, or things you were meant to do
- You find it harder to concentrate on tasks or work
- More pain from a lack of satisfactory rest
- Getting sick more often
What does this feel like?
The fatigue itself feels like a state of perpetual heaviness, it feels different from simply not sleeping for a couple of days. Like your limbs and body are bogged down with weights, and moving around is slow and laboured. This heaviness comes not just from knowing you are always being on the edge of exhaustion, but from the baggage you are carrying around.
A normal day means measuring up the weight you’re carrying from when you wake up, against what you need to accomplish that day.
Do too much too quickly, or push yourself too hard in this state and you’re likely to need to lie down and rest, writing off that particular day, or a sizeable portion of it.
The next day your body might feel lighter, or more normal, or it might feel even heavier, it is the daily or weekly shift between healthiness and tiredness that is frustrating.
Living with fatigue means planning every aspect of your life against how much energy you have for that day, and how much an activity or task will sap out of that days total.
Nothing is spared from this total. Getting ready for work, carrying items, walking a short distance. Planning or completing work, even fun things like spending time with friends. Every activity in the day is a calculation.
Ultimately living with fatigue (like living with endometriosis) means giving up a lot of the freedom to do things that other people take for granted.
How can chronic fatigue and endometriosis be managed?
There’s no cure for this weighted feeling of fatigue. Unlike a normal body you can’t eat or rest to quickly to top up or kickstart your body. You learn instead to make friends with fatigue, learning when it will cut you some slack on the good days and take the opportunities to operate more normally.
However there are no shortcuts with fatigue, and trying to do too much will set your body back days or even weeks.
The only solution is planning. Thinking about the shortest path to walk somewhere, the lightest item to carry home, the location for an event to go to that will allow you a quick journey home should you find yourself crashing and needing to rest.
On the plus side it means a life where you cut a lot of the crap out. You can’t waste time or spend too much time doing things you don’t enjoy or being places you don’t want to be. Fatigue (like endometriosis) has a way of making you realise what’s truly important in your life, giving priority to the people and aspects of your life that really matter.
The ongoing battle for a better quality of life with endometriosis is an ongoing one for many. To help yourself feel better you’ll need to make friends with fatigue and learn how to plan around it, so you can eventually back away from this debilitating side effect.
I am absolutely hating chronic fatigue at the moment, it’s stopping me from enjoying some pain free time!
I know the feeling, it’s the fatigue I dread the most, it’s stops me completely when it arrives. Horrible. I hope you get some relief soon!
I thought for many years that I had endometriosis because I had painful periods, especially in college. I didn’t start menstruating until my 16th birthday due to being an athlete, and by college, my periods were heavy and painful. Then, a couple things happened. First, my dentist noticed that I needed 3x as much Novocaine as his non-redhead patients and mentioned that people with my coloring are super-sensitive to pain. Then, a redheaded ladyfriend told me about a trick where she starts taking Advil 2x a day starting a week before her period. That worked pretty well and I also cut out caffeine for PMS week.
Then, I moved from a city in the Midwest which has some of the most xenoestrogen-polluted waters in the USA to NYC, which has the best water in America. After I did that, my periods got much lighter and less painful all of a sudden. Finally, I hit my 30s, which is when many doctors claim that primary dysmenorrhea is sorted out. Now, I only have one heavy period a year; otherwise, it can take me up to 8 hours to soak through a regular OB Tampon and up to 12 to soak a Super. And, the cramps are managed by Advil and low-dose buphenorphrine (a partial-agonist opioid). So there’s that. Is that endo? Does it spontaneously go into remission when women are in their 30s? Or if they move to less polluted cities?
The thing is, now I have other symptoms, in my 30s, that manifest all month long. I can be extremely exhausted randomly, where I need 12 hours of sleep a night, plus a 3-hour nap. I’ll fall asleep while working! I have bowel flares (had them since I was 21) that look a lot like Crohn’s Disease. (However, they are mostly controlled at this point by the low-dose bupe, which I also take as opiate replacement…I had a legit Percoset script for period pain, migraines, and arthritis from the teenage athletics, and when my bowel issues got out of control, I graduated to street heroin in my late 20s, early 30s. That’s all over.) Finally, I have the worst random joint pain, especially in my knees and feet.
Are there other related illnesses that may be autoimmune, and cause fatigue, but are not endometriosis? Do you have any tips for working with this fatigue? And, is there a point at which you know when you need to go on SSDI? I will try to wait till I’m 40, also because it will ensure my base SSDI wage is higher and I’ll be more likely to win my case, but I have to say, I feel like I’m in my late 60s instead of in my early/mid 30s. Ugh.
All my normal caveats about not being a doctor apply, but I’ve not seen any hard evidence that endometriosis can go into remission based on someones age, other than normally with the menopause.
On your other symptoms chronic fatigue is very common with woman with endometriosis – but fatigue as a symptom is common with lots of diseases, particularly autoimmune based ones. The best thing to do would be to seek a referral to pin down what your particular symptoms can be attributed to. Don’t be concerned if you’re labelled with a few conditions before you get a confirmed diagnosis, this is very normal. I was suspected to have about four different things before we settled on endometriosis as the root cause.
There’s no simple answer for living with chronic fatigue. I most manage through sheer willpower, gentle exercise and really careful pacing so I never overdo things. It does mean I have to cut back on a lot of activities that I used to do, but now I’ve settled into a good routine I only struggle maybe once a week rather than every day like I used to. I know lots of people never really mention specifics of their pacing plans (mainly because we’re all different and so are our approaches and what we can manage) but perhaps this is something I can try to cover in more detail in a future update.
You mention that you suffer with bad dysmenorrhea (which I also had prior to getting diagnosed with endo) but you don’t mention if you’ve been definitively diagnosed with endometriosis. Truthfully only a good consultant referral and a laparoscopy can tell for sure, anything else is just a guess, and may cause you problems in the long run. I hope you continue to be as well as you can be despite your current circumstances.
I’m sorry to hear about your condition. I hope you can find help to feel better and I hope it’s not endo. I do know that you can’t get SSDI for endometriosis alone… No matter how severe it is. I have stage IV Deep infiltrating endometriosis and my endo has spread beyond the pelvic cavity. It’s a mess in there. I can’t work due to the severity of it but was denied SSDI because its not on the list of qualifying illnesses, conditions, diseases. I couldn’t even get an attorney to pick up my case. Sorry it’s so long. Just thought I’d share my personal experience about endometriosis & SSDI.
I just turned 22 and I’ve been dealing with chronic and pretty sporadic pelvic pain for the past 3+ years now. A few months after it began, I started developing other weird symptoms such as i was incredibly weak, my arms would hurt, and I began getting so tired to the point where I felt absent and unable to participate. My eyes burn really badly when the fatigue gets bad. Although the weakness seems to have dissipated over the past two years, I still have the horrible pain and am INCREDIBLY exhausted, which no one seems to understand. It feels like death. Unable to move. I’ve had test after test done – unfortunately, last summer I was diagnosed with IIH/PTC which has made me unable to get a laparoscopy due to not being able to have anesthesia. But I’ve seen so many doctors and feel as though they all write me off. And it’s more than a bit frustrating. (I also have quite a few things going on depression/anxiety wise, and mentally in general, which I go to therapy for. I wouldn’t have gotten so bad in this area in the first place if it weren’t for my physical health.)
Your experience sounds all too familiar to me. It’s not really something anyone else can understand until they’ve been through it, it’s very easily for others to dismiss our experience of pain and fatigue because it’s easier than accepting or acknowledging the truth.
Wow…. this is exactly how I feel. I have stage 4 Endometriosis and Severe Asherman Syndrome. This has really made me feel better just reading it. I hate that anyone else feels as bad as I do, but it is nice to know that someone actually knows how I feel and has helpful tips.
Pingback: Chronically creative! My proposed solution for crippling fatigue. | The Endo The World?
I have been reading your blog for a couple of months and wanted to say thanks for sharing your Endometriosis story with others.
In January of this year, I was diagnosed with Stage 2 Endometriosis at age 21. I have now undergone 3 Laparoscopic Surgeries and am still suffering with ongoing (potentially ovary related) pelvic pain. To add yet another diagnosis, I was told by my Gynaecologist 2 weeks ago that I also have Adenomyosis.
Having just read your post on Chronic Fatigue being Endo related, I am questioning the separate diagnosis by my GP that I also have Chronic Fatigue Syndrome. I had no idea that Chronic Fatigue and Endo could be so closely linked, as I’ve had ongoing fatigue for the last 6 months. Reading your post, it sounds just like me.
I’m still trying to work out how to handle my fatigue. Some days I am more mindful of my energy use than others. Sometimes I just ignore it altogether, but regret it later as overdoing things or going out gives me what I refer to as ‘jet lag’ for up to 3 days afterwards.
Thanks for this post and your blog is my favourite Endo blog out there 🙂
It’s entirely possible for you to have a separate diagnosis, but I always thought that CFS could be diagnosed when no long-term underlying illness caused the fatigue. It could be a case of a diagnosing GP not being aware of the impact that endometriosis can have. GPs are great, but they don’t always appreciate the complications that endometriosis can cause. It can be difficult to diagnose CFS, and unlike endometriosis there’s no easy way to see the problem.
Thanks for the lovely comments about my site.
Thanks for your reply.
I have always been of the opinion that my Chronic Fatigue is because of all of the things that my body is struggling to deal with on the inside. I’m not too worried about the seperate Chronic Fatigue diagnosis questioned by my GP and Naturopath, because I hope that as my body starts to get the Endo under control (hopefully) that my Fatigue will improve.
I agree about your GP comment as well, as some of the symptoms I have connected to my Endo from research, my GP says “oh no, that can’t possibly be due to your Endo.” It’s definitely good for me to have places to come like your blog where I can read about others experiences and say to myself “Yes, that sounds exactly like I feel” like I did with your above post on Endometriosis related fatigue.
Wishing you a lovely Christmas.
Hope you have a wonderful Christmas. Always have the confidence to communicate the problems you are experiencing, even if someone doesn’t believe you. Eventually you will find the cause.
This is the best read I’ve found on how it really feels to have the endo fatigue. It’s really bringing me down right now but reading this has made me realise that I can’t fight it and I just have to accept it and find ways around it. Thank you x
Happily I’ve not had fatigue in a little while, but it remains the hardest aspect of the illness to manage with. You’re most welcome, I hope you get some relief soon.
THANK YOU I WENT THROUGHT THIS FOR A LONG AND MY DOCTOR PUT ME ON PAIN MEDS TO HELP IT WORK AT TIMES BUT I STILL HURT A LITTLER THANK YOU GLORIA
Reblogged this on YellowRibbonBlogging.
is there any cure for endometriosis after hysterectomy for the shooting pains, hip pains, leg and feet pains
I was just diagnosed with endometriosis and uterine polyps. My pap came up abnormal so he wasn’t do to a biopsy before he does the Laparoscopic surgery. In the mean time I’m waiting and I will go through another period. Nothing helps pain wise, and now chronic fatigue has kicked in. I’m on the last day of my period, I have to go to work, and I feel all these things in this article!
I want to cry all the time because I used to get up and go and do. I am also an author and graphic designer and I’ve noticed sitting at the period kills my shoulders and lower back. I can’t focus, everything is foggy and I feel like I weigh 1000 pounds. I do play my day very carefully. I have gone from writing 5k words a day (finishing a full-length book in 14 days), doing a graphic job, and going to my office manager job. To only being about to do one of these things a day–usually its my office manager job. I haven’t been able to write in three months, and it’s sort of killing my soul. I hate this, does the Laparoscopic help at all? Will it cut symptoms at all? Will they do any sort of hormone replacements or therapies? I feel like I’m walking in blind when I go to the doctor.
It’s hard to say if surgery will be a benefit to you as I am not a medical professional. However surgery to excise (cut the endometriosis out) with a combination of the pill back to back and the mirena is the normal treatment and will return some quality of life to most women. I know how you feel with the tiredness and pain. I’d suggest you have a read of my new to endometriosis information as this will give you insight on what’s to come.
I am soooooooo tired but I get 12 hrs of sleep but still can’t shake the feeling I have a 3 month old daughter and I sleep and sleep and just can’t get over it nothing works and yeah unfortunately my house and family are suffering from it.
I just started a blog last month about my journey with endometriosis. I have been on Depo-Provera since April for heavy periods and painful cramping but was only diagnosed with PCOS at the time. I have been back and forth to the GI doctor because of symptoms that appeared to be Crohn’s disease, but he couldn’t find a cause through scopes and other tests. Anyway, I ended up in the ER in August with HORRIBLE stabbing back pains – my mom and I thought I had a kidney stone. I could hardly breathe it was so painful. I also had really intense nausea and very high BP at 162/97 (it’s NEVER been that high). Anyway, the ER doctor was no help because he just ran blood work and urine tests and told me to follow up with my GP, who suggested I might have an ovarian cyst. I ended up seeing my OB/Gyn a week later and he immediately did a transvaginal ultrasound and stated that my ovaries looked fine but my uterine lining was thicker than usual for someone on supplementary progesterone. When I told him I had been bleeding irregularly for over a month, he asked if anyone had diagnosed me with endometriosis and asked if I had it in my family. He also set me up for an exploratory laparoscopy, hysteroscopy, and D&C in October. I have been struggling regularly with crushing fatigue that makes me feel like I have weights strapped to my body. I also struggle to stay awake while at work. I’m hoping the surgery helps, but my friend, who is younger than me, had stage IV endometriosis that did not resolve with excision surgeries – she ended up with a hysterectomy at 29 and says she feels so much better. I’m 33 and wondering if that will be my fate.
I have been living with endometriosis for 8 years now I’ve had the surgery I’m trying to deal with my pain and this really makes me feel like I’m not alone. It’s truly how I feel with the fatigue. All of my friends are extremely active biking and hiking and I try my best to keep up with them and to do What I love to do which is be outside with my dogs. But yes it’s hard not to be depressed but I’m really trying to help myself get my mind wrapped around trying to move on.