Struggling to know what symptoms are from... - Endometriosis UK

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Struggling to know what symptoms are from the endo!

Emma-louise profile image
15 Replies

Hey Ladies!

Im awaiting a Lap after i was diagnosed with small endo in my pouch of douglas via an ultrasound!

I have found that i am absolutely exhausted all the time, my moods are pretty terrible, with strange bowel movements (TMI - sometimes constipation other times diarrhoea).

I went to my GP and have had lots of blood tests for Thyroid, liver, B12, Anaemia, diabetes etc, and they've all come back fine, so now I'm wondering whether these could all be related to my Endo diagnosis?

Any help would be appreciated! Thanks

Emma x

EDIT - Also does anyone have recurrent mouth ulcers...painful ones too, but all the time? Xx

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Emma-louise profile image
Emma-louise
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15 Replies
Bokkie profile image
Bokkie

Hi Emma-Louise,

It must be related to Endo because I am exactly the same as you AND my blood tests also came back fine. Frustrating, isn't it?

You are not alone. x

Lilykat197 profile image
Lilykat197

Same here!!! Exactly the same symptoms, just had extensive endo removed 3 weeks ago so hopeful for some decrease in pain and symptoms soon.

Hope you find something that works for you xxx

leesprincess2013 profile image
leesprincess2013

Hi hun, just to let you know I had problems with my bowel movement similar to what you describe, and horrible sharp pain right in there when passing stool especially when I was due on, this was all before my lap and when it was confirmed there was endo on my bowel. Now that it has been treated, not being funny but movement is normal and the pain has decreased. Hope this helps. Best of luck hun xx

mimilover profile image
mimilover in reply to leesprincess2013

Same💜💜💜💜I knew something was wrong with the bowel area.

Emma-louise profile image
Emma-louise

Thanks ladies! Nice to know I'm not the only one, fed up of it all to be honest, mainly the fatigue!! Xx

leesprincess2013 profile image
leesprincess2013 in reply to Emma-louise

Yer I hear you on that, I went from working 35hrs a week and feeling very now I can manage 15hrs and I will have to come home and nap before to doing anything else

Lilykat197 profile image
Lilykat197

I agree the fatigue is rediculous, I haven't had a night out in months I'm in bed for 7pm most nights!!

nicococacola profile image
nicococacola

Hi there I hope you're feeling a bit better!

You sound exactly like me and all your symptoms sound the same. All my bloods where fine, except I get anemic every month with heavy periods. But of course the Dr assumes there's nothing wrong with you when the tests come out clear, right.

I have a cycle of diarrhoea and constipation, I can usually predict when I will get it in regards to my cycle.

Also, now you mention it I have had mouth ulcers ALL the time. I wonder if that is an Endo symptoms, it probably is the symptoms are endless!

I hope you get sorted out soon and don't let your GP put you down, you know your own body more than anyone else so if you feel something is wrong don't give up. Xxx

daffodil profile image
daffodil

Have you been tested for coeliac disease?All your symptoms point to this especially chronic mouth ulcers.Mines disappeared on a gluten free diet.If you have not been tested ask Gp for blood test. Could also be endo related.You could try endo diet and see if any symptoms improve.

Emma-louise profile image
Emma-louise in reply to daffodil

Yep my doctor just did more tests for Crohns disease and coeliac, and also for folate and b12, and they all came back fine. I think it may be time to change my diet and see what happens, thanks. x

daffodil profile image
daffodil in reply to Emma-louise

Definitely the way to go -it may sound daunting to remove gluten but there is lots info available and you will find that if it is gluten causing symptoms that you will feel very much better within days.My homeopath,who suggested I was gluten-intolerant said I would see an improvement within a week,and I actually felt better overnight re the IBS cramps,wind ,bloating which I had every night.I looked 6months pregnant by night time.Lots info on the endo diet also,but take things slowly and go gluten free 1st.

Dillweed1 profile image
Dillweed1

Hi. I think the mouth ulcers are related to gluten too. I've had horrific ones over the years where I could hardly eat and finally got tested for coeliac but results were negative. A naturopath did some testing on me and when it came to wheat I couldn't lift my arm up. It was a weird german machine and I was sceptical so continued eating what I wanted. However since giving up gluten my digestive system works a treat- no constipation any more, no mouth ulcers . I also take Vit B12 which is supposed to help with the mouth ulcers . I know a lot of us take ibuprofen for the pain but I have been reading that it can lead to leaky gut and make our problems worse. I also think it contributed to the ulcers. I really think it is important to look at our nutrition . Constant mouth ulcers and pain is our bodies way of telling us something is really wrong. I wish I had had the sense to change my diet earlier.

Brownlow profile image
Brownlow in reply to Dillweed1

I'm really sceptical about those machines too. Do you believe it works?

I also have mouth ulcers and more worryingly one of my back teeth has just crumbled and I'm too scared to go to the dentist! I agree with you about mouth ulcers and poor mouth health indicating a problem in the body. It's a good indicator that something isn't right.

Dillweed1 profile image
Dillweed1 in reply to Brownlow

I wasn't convinced when I had it done years ago but it seemed odd that I literally couldn't move my arm when he was testing for wheat. I know I'm better without the gluten so there may be something in it. I remember going gluten free for a month after he tested me and having a pain free period afterwards. With the benefit of hindsight I would have stayed gluten free and maybe avoided a lot of the trouble I had after.

daffodil profile image
daffodil in reply to Dillweed1

Same with me Dillweed - if I cheat on gfree diet,I wake up next day with mouth of ulcers.Suffered all through childhood and into my 40s with them,until went gluten free.Ulcers are indicative of inflammation,which suggests to me that endo may be an auto immune disease?

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