I am waiting for another op to remove endo from my bladder etc and my bowel about 35 cms as I have it penetrating through in 2 places lower rectum and mid sigmoid. The pain I suffer can be very bad around my period maybe lasting 3 days and I get rectal bleeding around the same time too. But my worst symptom is extreme fatigue every day and this is what is stopping me living a normal life not the pain.
I asked the gynae about fatigue and endo and he said you would be tired with the all the pain and the pain killers you have to take. I only take paracetamol on those three days.
Is anyone like me? Or is it down to something else?
Also if you did suffer from extreme fatigue did removing the endo get rid of it?
Written by
EllaRuby
To view profiles and participate in discussions please or .
"Hi EllaRuby, I came on this site looking for help with fatigue too. I have endometriosis, menopause, and more recently, hypothyroidism. I don't get much pain from the endo these days, but horrible menopause symptoms and similar ones from hypothyroidism,which appears to be linked to endo.
GP wants to sign me off long term sick, but can't afford it. Looked into getting help if I reduced hours but none for being only a bit sick. Eventually dropped some hours to give me a long weekend every second week but can't affford to drop any more.
Have been reading a lot the last couple of days, fatigue is a common problem. The route I think I'll go down is depression. Have read about "anergic depression", are you familiar with it?
Noticed you are only taking paracetamol for pain, is that enough? I used to find that if I took painkillers the day before the period was due I could control it better. Also used a TENS machine, I haven't seen it mentioned yet.
Thanks for replying sorry your suffering from fatigue too. I hadn't heard of 'anergic depression' before and have just looked it up. I don't relate to any of the symptoms other than the fatigue like in normal depression. Which is a shame as I would try anti depressants.
I suppose I'm hoping on some level its the chronic inflammation from the endo causing the fatigue and once its removed I will feel alot better!! I can only hope!!
I am currently on long term sick leave suffering with chocolate cysts on my ovaries and bowel problems. My op isn't due to take place for another month. In the meantime I am taking Nerve Pain relief. This doesn't entirely take pain away however helps me to relax as well as sleep better at night. I do suffer with fatigue too - the doctor told me that this was related to the endo and should clear once endo removed. Here's crossing everything. I wish you all the best with your health - keep your chin up!
Thanks for replying, that is good to hear, wish all the doctors could agree on the same things!! Sorry your going through it too, will definitely be keeping everything crossed, good luck with your op Xx
No removing the endo did not stop the extreme fatigue. Nothing that i have found stops it.
I wish there was something. It's almost like having narcolepsy. after the smallest exertions I can fall asleep in a second and its deep sleep for hours . And even with that sleep it never resolves the constant underlying knackeredness.
Thanks for responding, not what I wanted to hear but preparing myself for this as the gynae didnt seem to think there was a link. Sorry your going through it too, if I ever find the answer will post it on here!! Xx
Most of us with endo suffer from fatigue -do you have heavy bleeding?I would get checked out for anaemia as this is very common and will cause fatigue, breathlessness.Could as GP says be the extreme pain and inflammation -your body has to work overtime to cope with pain and inflammation. Paracetamol seems very little for pain relief -is does it relieve the pain?If not you are much better to get stronger pain meds as constant pain is exhausting.
How did they diagnose the endo in colon,bladder ?Scan ,colonoscopy?I am in similar position at moment and am very fatigued,though I also have ME/fibromyalgia.
Hopefully once you have had your op,you will know just how extensive the endo is and if successfully cut out,you may feel less fatigued?If not it could be something else - thyroid disease is also very closely linked with endo
,as SK291 says.
Certainly no harm in asking GP to do a full blood test for anaemia,thyroid,inflammation.
I have felt so tired recently that my doctor did a blood test to check my iron levels as the last time I felt this tired they said I had anaemia. The test came back ok and I don't have low iron this time so I guess it is the Endo only affecting me this time. It is so frustrating because at least last time I could take iron tablets which did help! XXXX
I so no what you mean, you want them to find something because then you can treat it. It just seems mad how little is known about endo. Some things you read say endo causes fatigue but doctors disagree. But to be honest I've never heard anyone saying after there lap they had lots more energy just that there pain had gone or improved.
Sorry you feeling so tired too, I hope some answers/treatments come our way soon Xx
I think that if it isn't anaemia (or the thyroid thing - I was tested for that too), it is our bodies trying to fight off this awful disease. I have read that that is definitely an explanation for such fatigue; our bodies are basically knackered from fighting all the time...
Thanks for responding, I dont have heavy bleeding and never have thankfully but have been checked for thyroid, anaemia, b12 even asked for my adrenal glands to be checked and all good!!
Have had MRI, sigmoidoscopy, rectal ultrasound and finally a lap last August to see the extent off it to prepare me for all that would be involved in this next op. Which was meant to be this Jan just gone, but now all they are saying is they will send me an op date 4-6 weeks before!!
Most of the time paraceamol is ok, bizzaerly it wasn't before I was started on a blood thinner for another condition and its at its worst for only about 3 days. Whereas again before the blood thinner pain was daily so god knows what thats all about, but grateful anyhow!!
Thanks again and really hope things improve for you soon too Xx
glad to hear you have been throroughly checked out.What is the blood thinner? Could that be a help for endo pain?I take omega 3 fish oils,which also have a blood thinning effect.I have not been taking recently as GP thought I would need emergency surgery and apparently blood thinners can cause heavy bleeding after surgery.Thanks for that tip.
What a nuisance - was the op cancelled?Sending you a big hug and best wishes.Keep posting and let us know-such a great bunch of ladies on here.
The blood thinner is called Fragmin its a form of heparin. I take it for antiphospholipid syndrome but have read about people with endo taking as part of their ivf. Have no idea why its helped with the endo pain but thats interesting about the omega fish oils, did you find they helped you? I have to stop the fragmin 24 hours before the op.
I hope it hasn't been cancelled, when I last saw the gynae in September, she said it will be in January. I hadn't heard anything mid December so I called the hospital and spoke to the waiting list manager and thats when she said 'looks more like February but will send you a date 4-6 weeks before' and have heard nothing since. I will chase them again, I don't understand the games of the nhs.
Emergency surgery sounds scary, cant they get you in sooner? It seems the nhs only does something when its got to an emergency state!!
Will definitely keep you posted, its so nice to know your not alone, but sad at the same time that so many of us are suffering Xxxx
I find having fatigue is one of the worst symptoms of this condition (all be it that my endo has returned - awaiting diagnosis). Funny enough, I do not remember having fatigue and feeling faint first time round - when I had endo in May 2012 and had the tissue lasered away. However, my body has been through a lot since beginning of Dec, as I had a nasty kidney infection and was on loads of antibiotics. The endo seemed to kick off at the end of this illness - probably because my immune system had a battering.
I am trying to eat well and do everything to support my immune system - I did take a course of probiotics after the antibiotics.
I find taking the herbal medication Korean Ginseng has helped, I have certainly improved greatly after taking this (but you need to check it does not interfere with other medications) and I am trying to exercise more and try and go out for a walk daily (if it is not raining!). However, I do need to rest and this problem is impacting upon my life. I am only just holding down my three day a week part-time job. I am knackered on Saturdays, my first day off after the three days.
Thanks for responding, sorry your going through it too. Endo does seem to mess with your whole immune system. I looked into ginseng but was told it would intefere with another drug I'm taking called Humira which is a shame. Like you, I do my best to exercise (within my energy limitations!) and eat a good diet, but keeping everything crossed that after the op energy levels will improve.
I can empathize with your situation. I also have Endometriosis, and am currently awaiting my fourth lap, as it is suspected that the Endo may be on and around my bowel. I have been told that if it has gone through the bowel, then I can probably expect another op after this one. My Endo in the past was found on pouch of douglas area, around bladder, ureters, and also deep infiltrating Endo of utero-sacral ligaments.
Now, my understanding is that every women is different, thus every woman's experience of Endo can be different. Some women can have minimal Endo, but lots of pain, and vice-versa. There have been suggestions made by researches that claim that the pain levels caused by Endo directly relate to where it is found (thus Endo in some part sof the body is more painful than others). Pain, in its own right, if it is chronic and unrelenting, can cause fatigue.
However, you seem to suggest that your pain is not particularly bad most days (just bad around your period), and can be managed, so you suspect pain is NOT the cause of your fatigue.
There is some research into Endo that suggests that one of its symptoms can be FATIGUE. Not all women will experience it, but clearly some do. There is some really good information about Endo symptoms, including fatigue, at this page...
Fatigue is actually classed as quite a common symptom. It is thought that it may result from the effects of inflammation caused by the Endo - your body uses up energy fighting the inflammation. Other theories are that Endo may be an auto-immune syndrome, and that this could be the cause of fatigue. Obviously, if your immune system is depleted, it leaves you more infection-prone, and feeling "run down".
Information about Endo as a suspected auto-immune disease can be found at...
Research has also shown that Endo can be accompanied by a number of other disorders; AND that having Endo makes the likelihood of having certain other disorders MORE COMMON. Of these disorders, CHRONIC FATIGUE SYNDROME is one, FIBROMYALGIA another, and M.E. a third - ALL OF WHICH CAUSE FATIGUE.
Information about illnesses that are common alongside Endo can be found here...
So, it could be that your Endo itself causes fatigue; or you might have a second illness alongside it. Either way, you are NOT alone in experiencing fatigue and having Endo.
I also experience fatigue, and have Endo. I also have a diagnosis of Post Viral Fatigue Symdrome. I can understand that fatigue can be VERY frustrating, as it gets in the way of things you would otherwise wish to do, and achieve pretty easily. There are ways around this, and I will send you a further response, with a list of the things I do to keep control over my Endo. Do remember that this is only advice, and my opinion, so it may or may not work for you. Do not feel obliged to act on any of my advice... it is up to YOU to decide on the best treatment and management of your symptoms. That way, YOU stay in control.
So, good luck. I wish you all the best with your recovery. I'm off, now, t find my list, and then I'll send it to you. It may be a little lengthy, but please bear with it. There just might be something useful in there!
Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!
By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!
For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:
1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.
2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists London Area) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.
3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!
4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.
5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings too, to see if they are Endo related, or maybe due to fatigue.
6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!
7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?
8. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties.
9. Fatigue can be a pain! However, do not let it get you down. Try to find ways that you can regain control. Perhaps pacing yourself when doing activities (this is a good tip I learned from M.E. sufferers). Do not expect to get things done as quickly as you used to; and DO NOT punish yourself for this. Instead, work out at what point during an activity you start to feel fatigued. This is like a "cut off" point. Don't push yourself beyond it, instead rest and recuperate. You can also learn to "stagger" activities, taking short rest breaks inbetween periods of activity. So, if, for example, you are vacuuming your house, and find it tiring to do the whole house in one go, just do a room at a time, taking breaks as you go along.
Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.
I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail (elaine-ellis1@hotmail.co.uk), or keep regularly in touch, feel free.
Take care,
Elaine Ellis.
P.S. Just a few useful contacts:
1. ACAS (info about work, rights, and illness/disability) - telephone 08457 474747.
2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone 0808 808 2227. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.
Wow Elaine, thank you so much, will read through those links now. You've got it spot on with the 'invisible illness', I couldn't have put it into words as well as you. I hope your op goes well, thanks again Rosie Xx
I've have been dealing with endometriosis sine I was 12, I am now 31. The pains have always been bad but it got worse after the age of 20. Ive had 3 surgeries ...Yes Fatigue is real. I know what your going through I'm always so embarrassed because the amount of time a day I spend sleeping. I tire very easily I try to eat clean as much as possible and it does really help but the fatigue is still present
Thats the same as me had symptoms of endo from age of 12, diagnosed in 2008 at 26 after lap, had another lap last August and have another one due and am now 31! I wish the doctors knew how much we suffer and for how long Xx
I am constantly tired and my sleep pattern is all over the place to because of the endometriosis removing it hasn't stopped the symptoms and the endometriosis plays havoc with my iron levels to which also doesn't help either but I fully understand how your feeling x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Has anyone had an infection due to endometriosis?
Endo surgery if you do not have pain symptoms
Trying to get pregnant after diagnosis?
Fatigue, anaemia and chest pain
Not being able to wee 
