Endometriosis & perniscuous anaemia? - Endometriosis UK

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Endometriosis & perniscuous anaemia?

K8YL31GH profile image
17 Replies

Does anyone else have experience of the b12 deficiency as well as the endometriosis?

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K8YL31GH profile image
K8YL31GH
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17 Replies
sasbe profile image
sasbe

yeh i am B12 deficient and have to have an injection every 3 months and also have endometriosis! do you suffer from both? and if so are they related in anyway as i have never put the two together before. :-)

K8YL31GH profile image
K8YL31GH

Yes I too have them both , I don't know if they are related but the thought that b12 is due to lack of white blood cells and given the amount of blood you lose with endometriosis with buildingore of a lining than most I would think somehow there is a connection ?

awillems profile image
awillems

I have been diagnosed with a B12 deficiency. The reason for my B12 deficiency isn't found.

perniscuous anaemia can be one cause of B12 deficiency, but there are other causes possible as for a b12 deficiency.

I haven't officially been diagnosed (yet) with endometriosis. i am on hormone treatment which reduced the pain, but still some issues remained. i am currently waiting for my lap date to hopefully get a diagnosis.

I expected B12 deficiency myself, because of different symptoms. one of them having very irregular periods. once i had treatment for my B12, my periods became more regular. At that point i noticed that the period pains was much worse and also outside my actual period.

Curious123 profile image
Curious123 in reply to awillems

I haven't been diagnosed with Endometriosis, but was diagnosed with B12 Deficiency (PA without anaemia) 6 months ago. But I too have found since being on injections my period pain is much worse.

K8YL31GH profile image
K8YL31GH

Yes I too have them both , I don't know if they are related but the thought that b12 is due to lack of white blood cells and given the amount of blood you lose with endometriosis with buildingore of a lining than most I would think somehow there is a connection ?

lmcghie profile image
lmcghie

I HAD B12 AS WELL AND HAD ENDO..INTERESTING

awillems profile image
awillems

Just my guess - i am not an expert:

One of the reasons for B12 deficiency, could be an absorption problem in your intestines (ileum).

My guess is that since many women with endometriosis have also problems with their intestines, this might have an effect on the absorption of the B12.

lazylanc profile image
lazylanc

Pernicious anaemia is classed as an autoimmune condition...and though I don't get agreement with my gynae clinic, I've found research to suggest poss cause behind endometriosis is autoimmune-related (amongst other issues).....indeed, a lot of people who experience endo have existing problems like gut sensitivity. Perhaps that doesn't help!

Vicky31 profile image
Vicky31

I too have endo and B12 defient also low folic acid. Have been animic in the past when I was a child. Doctors don't know what is causing mine they have checked for everything yet it is still low. Although I've just found out a friend has got B12 definent after having a baby and losing lots of blood. So don't know if that could be a reason. Hormones and blood loss......weird a few of us have it

Narla profile image
Narla

I have both too and am on the injections 3 monthly. I really know when the jabs are due though its very exhausting. The cause of mine is unknown too but I can't absorb the tablets so it must be an absorption product although whether this is caused by endo or not I don't know..

lux40945 profile image
lux40945

Hi everyone i think I can help here. I am an endo sufferer but also a biomedical scientist and measure B12 as part of my job. B12 deficiency is tested for when you are anaemic which often occurs if you bleed very heavily each month. The B12 injections are to help produce more red cells each month as your B12 stores can quickly get depleted. Heavy bleeding is quite common in endo sufferers and anaemia can make you feel very tired and low. Not all anaemia is treated with B12 it depends on the type of anaemia, it may be due to iron stores being used up. Any more information needed just ask!

in reply to lux40945

Can I ask if B12 can be deficient even if your haemoglobin levels are normal?

During every period I am so much more tired then usual. I also get sore cracks at the corners of my mouth. When my iron levels are tested they are within the normal range.

I do suffer with fatigue but it's ten times worse during and for about a week after my bleeding.

Regards,

Barbara

Raeking profile image
Raeking in reply to lux40945

Hi I have B12 deficiency, hypothyroidism and an endometrioma on my C scar. I have 8 weekly injections but when I'm due my injection my endo mass flares up and it's like a hot poker. The Drs say B12 can be dangerous if taken too frequently. What would you say are the best levels for people with a deficiency? Xx

nectarine profile image
nectarine

I also have endometriosis and pernicious anaemia however I was told mine is due to a b12 deficiency and because my stomach cannot absorb this vitamin from the food I eat. The tablets do not work to raise the b12 levels in my blood again because my stomach does not absorb them I therefore have injections every 12 weeks and they make a massive difference to my energy and tiredness!

With a lot of people doctors will not realise they have this medical condition as it doesn't show on regular blood tests so anyone suspecting they have it make sure you check if they have tested for it as it's not the same as normal anaemia tests.

BabygirlAlleva profile image
BabygirlAlleva in reply to nectarine

I had a doctor check my liver and kidney and he was right I had b12 deficiency and calcium I had been having problems with my taste and smell but I'm still so tired on supplements only been a week but he said he may want to put me on the shots I've been tossed from dr to dr pill to pill no one has done laparoscopy but I've known my endo came back 3 yrs ago migraines came back painful sex with my husband missing periods stomach issues like GERD and pain in intestinal tract during period times cramps in legs and back and abdomen it's hell for me and I just learned if gone untreated or severe cases which birth control never agreed with me but I'm taking it... But it says can grow in nasal cavity I need someone to hear me and maybe be able to help I know my endo has re surfaced last time it was attached to spine intestines stomach kidney and ovaries and fat 10 yrs after my removal I started getting same symptoms :(

lux40945 profile image
lux40945

It is possible to have low B12 with normal haemoglobin as it means that your body is coping and producing enough Hb but has no reserves so any heavy bleeding may result in anaemia. Obviously there are others causes of low B12 but the most common cause is menstruation and a low B12 in itself does not cause tiredness but endometriosis can as it is a pain inducing condition and pain causes tiredness as your body gets 'stressed'x x

BabygirlAlleva profile image
BabygirlAlleva

I just was diagnosed with b12 deficiency and I have been diagnosed with endo yrs ago had surgery once for removal and I know it's came back and causes a lot of issues I just want it removed again so I can be healthy again:(

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