Can anyone tell me whether they experienc... - Endometriosis UK

Endometriosis UK

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Can anyone tell me whether they experience the same severe fatigue and weight loss with Endometriosis?

10 Replies

Hi ladies, I have Endometriosis for 4-5 years, just recently this past year I have had severe fatigue, I am talking severe. I get a good 8 hours sleep at night and within an hour of waking up I go back to sleep for the whole day. Is this a problem anyone else has had? I am on the Depo-Provera shot and am pain free from the endo but I am always so drained and tired. I also have unexplainable weight loss, I'm about 10kg-20kg underweight and I fluctuate a lot. I eat well and am not sure whether either of these have anything to do with the disease but it's worth a shot finding out whether I'm not the only one.

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10 Replies
MikkieG profile image
MikkieG

I am tired constantly also, I'll get a good full nights sleep and the first thing I'll think of when I wake up is when I can fit a nap in. I find it extremely hard to get up for work and if I don't have work, I won't get up some days because I'm too tired. I don't make plans anymore because when it comes to it, I have to cancel due to tiredness. It's horrible as well because people just think you're lazy! I haven't had any weight loss however, if anything I'm putting weight on.

Lolaloo profile image
Lolaloo

I have lost half a stone but like u on days off can sleep all day and I mean not even wake for food get up when dark? I don't no what my daughter thinks and I don't want her to think its normal. I work part time that's a struggle and when I'm not busy at work I have even popped home or to dads and had couple hours sleep! I've Hurd a few comments and it's been mentioned people think I'm on drugs! How do u get people to take these illnesses seriously? My hubby went to work this morning and commented I bet ur still b in bed when I get back! But I was!

Lolaloo profile image
Lolaloo

I have bad tummy pains and get so constipated having poo is like giving birth panting crying sweating so I can't just go any where ?

lk76 profile image
lk76 in reply to Lolaloo

I get bad stomach pain and sharp shooting bottom pains even when sitting.I also suffer chronic constipation and have painful bowel movements. I'm under the Dorset Endo Centre and I'm waiting to find out what op I'm having next but they said that it's possible I may need bowel surgery asit sounds like I have endo in the bowel. I know I have it in the pouch of douglas so maybe that's a possibility with you.

lk76 profile image
lk76

I'm also constantly tired and it's gotten worse over the last few months where I feel like my body is just shutting down. I wake up more tired than when I went to bed.

Inever seem to sleep well either due to hip pains and severe constipation. I really don't think people understand half of what we feel like most of the time.

sweetelle profile image
sweetelle

Hey Megan,

Yes ive definately suffered with extreme fatigue , even after a full nights sleep and eating super healthy . It comes over me in waves and i cannot focus on anything makes it very hard to work. I also have bowel problems. Apparantly endo can affect your bowel and functioning liver (what makes you tired) Im going to try and go on the No Gluten and Dairy diet to see if that makes a difference

CharlieSays profile image
CharlieSays

If you've lost quite a bit of weight recently have you mentioned this to your doctor? It could be related to your endo, but it could also be something else - might be best to get checked out.

sujs1972 profile image
sujs1972

I've lost a stone and a half in the last year or so. I have constant bowel congestion. I do go, but never seem to be able to go enough. I've had episodes of awful pain with this, and have constant discomfort. I'm on Movicol to ease the symptoms (which works to a certain extent). I have endo sticking my uterus and Bladder together, and in the pouch of douglas, as well as other areas. I also have a 4x4cm Chocolate cyst on my left ovary and small bowel adhesions. Even though I eat as much as I can, crisps, chocolate, cake, (all the things you shouldn't) I'm barely hanging onto 8 stone 11. (i'm 5'8, so I look like a coat hanger :/) And.. as people have said above... I'm exhausted. My sleep is interrupted because of the bowel problems, and I'm foggy and find it difficult to concentrate during the day, because, I think, of the dehydration which comes with constipation. I'm also Iron deficient, but can't take the supplements as they make me constipated. The only thing that I find helps is sugary drinks. Water does help, but the sugar seems to really help with at least feeling slightly alert when I'm awake. The tiredness is AWFUL. I'm sure there are lots of us with this who are dragging themselves backwards and forwards to work, running families etc. None of the medical profession so far have really acknowledged the tiredness. They only see us for 10 - 15 minutes at a time, and as soon as we leave they forget! I'm currently waiting for a colonoscopy to rule out endo inside the bowel (which I had to fight to get) And then I have to decide whether to go for an op to remove the cyst and implants, or have hormone treatment (which won't help if it's the bowel adhesions causing the symptoms! I think dealing with the medical profession is exhausting enough without the rest of it!

lk76 profile image
lk76

I used to take it a few years ago but it gave me bad stomach pains. I use Movicol now but even then it doesn't budge much. Every little helps I guess though!

I find my ovary pain brings on bowel pain and bowel pain brings on ovary pain .. it's catch 22 isn't it! xx

lk76 profile image
lk76

I haven't been offered a colonoscopy, my GP is useless and because I had a Sigmoidoscopy about 5 yrs ago he says it was fine then so would be now. I'm seeing my consultant on the 16th who has said that I will probably need to operated on by him and a general surgeon because my womb is stuck to my ovaries , bladder and bowel. It is a nightmare. I'm not always in agony but always in pain and discomfort but it makes me wonder if we just kind of get used to the pain. xx

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