Has anyone with endometriosis had issues ... - Endometriosis UK

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Has anyone with endometriosis had issues with bloods too??

jas_mum profile image
16 Replies

I have endometriosis but had to get boosters of b12 vitamins and was wondering if the two are connected. I struggle to separate the symptoms as being is exhausting and endorse am sure makes us all feel low...a lot so I was curious if there is a connection between the two

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jas_mum
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16 Replies
Miwa profile image
Miwa

I too have endo and b12 and vit d deficiency. The doctors have investigated both but never found a reason for it. Although they have never looked at the endo connection. So I'm not sure xx

Hi,

I have b12 and iron deficiency as well as endo. I found out about this long before I had endo. Not sure if there is a connection but would be good to know.

Screechowl profile image
Screechowl

i had b12 iron and folic acid deficiency before my hysterectomy. Heavy bleeding indicated for iron anaemia but I think the B12 and Folic acid were auto immune triggered and one theory about endo is auto immune disease so maybe it is linked?

Cocohoney1 profile image
Cocohoney1

Hi I have all the symptoms of Endo but am just in the process of trying to get my doc to take it seriously! He sent me for an ultrasound and blood tests the scan was clear but my bloods came back extremely low in Ferritin the lowest it could register so I wondered if the two were linked I have got to go back for another blood test before the doc will treat it! I already take B12 as recommended by a pharmasist about a year ago due to suffering with horrendous cold sores so was surprised with the results being so low x

Mrs-T2014 profile image
Mrs-T2014

Hi I have B12 as endo on bowel - I also can not eat gluten or wheat makes it tens times worse! Coeliac disease I was told B12 generally when you got a food intolerance.

Tinkerjack1912 profile image
Tinkerjack1912

I have folic acid deficiency and endo and I read up on an Australian site that the two are linked.

Bokkie profile image
Bokkie

I had very low iron and was put on iron tablets before I was diagnosed with Endo and started treatment that has stopped my periods. XX

Scooteeder profile image
Scooteeder

Hi "jas mum",

It never ceases to amaze me, the number of insightful and interesting questions and comments that appear on this Forum! It just goes to show that, left to their own devices, many so-called "ordinary people" have the same ability to question and to analyze things as so-called "geniuses" (genii - WHAT is the collective word for genius?!). Obviously, the women using this Forum have brains, and are not afraid to use them!

It makes perfect sense to question whether B12 and Iron deficiencies could be linked in any way to having Endometriosis. It's something I have also asked myself. Like you, I have Endo. I also suffer from low Haemoglobin (Iron carried in the blood), and low Ferritin (general Iron reserves) levels. I am unable to say about B12, as I (stupidly, now I come to think of it!) have never asked my G.P. about this, and my G.P. hasn't thought to mention it.

Looking through the responses to your question "Jas mum", it would appear that LOTS of women writing in with Endo ALSO suffer some form of B12 or Iron deficiency; some also have Folic Acid deficiency. So (because I am of a naturally curious inclination, and so, clearly, are you) lets see if there may be any links to explore...

1. ENDOMETRIOSIS CAN CAUSE VERY HEAVY AND IRREGULAR PERIODS - This could be your link to Iron deficiencies. Quite simply, each time you have a period, you lose an amount of blood. Now, if your periods are not particularly heavy, and are quite regular, then this should not be a problem; it is a natural bodily function. However, for women whose periods are very heavy, and come very close together, the excessive bleeding associated with their problem periods may lead to deficiency of Iron. This is quite simply because the amount of Iron consumed in the diet is not enough to replace the Iron lost during heavy periods. In the end, you become Iron Deficient Anaemic; often the first sign of which is low haemoglobin, because the oxygenated blood travelling round your body cannot find enough Iron to take on board. This, over time, can have the further effect of causing low Ferritin levels, as your body "eats into" its own stores of Iron in order to try to handle the deficiency. (A link to an article about Iron Deficiency and Anaemia is patient.co.uk/health/anaemi....

2. ENDOMETRIOSIS MAY BE AN AUTO-IMMUNE DISEASE - This is basically an illness that is either caused by a deficiency in the immune system (it does not function properly), or creates a deficiency in the immune system. Auto-Immune diseases may have hereditary factors. They often cause the body to behave in strange ways; sometimes the body attacks its own healthy cells, other times it allows cells to multiply excessively, or to grow in the wrong places, and sometimes it fails to attack invading cells of viruses or bacteria (leaving us open to repeated infections). Auto-Immune diseases can be linked, and it may be that some women with Endometriosis also have another Auto-Immune illness called Pernicious Anaemia. This is the most common cause of B12 deficiency. Basically, because you have Pernicious Anaemia, your body fails to produce an enzyme that helps it to absorb Vitamin B12. (Links to articles on Auto-Immune illnesses, and on Pernicious Anaemia can be found at patient.co.uk/health/vitami... also niams.nih.gov/HEALTH_INFO/A....

3. FOLIC ACID DEFICIENCY - This may be slightly different, as the general reasons for becoming deicient in Folic Acid are simply that we do not eat enough foods containing it. However, in rare cases, some Inflammatory Conditions and some Digestive Disorders (mainly Crohn's Disease, Diverticulitis - things like that) can lead to Folic Acid deficiency because they mean that the gut is unable to properly and fully absorb nutrients from our food. I do wonder (and this is just personal speculation, so it is completely unproven) whether women who have Endo on, or in, the bowel could suffer in this way. Perhaps their Endo makes their bowel less efficient at absorbing nutrients, including Folic Acid? (For a link to an article about Folic Acid deficiency see patient.co.uk/health/folic-....

So, in my opinion (and this IS just MY opinion, remember) there may be a number of reasons to associate Endo with B12, Iron and Folic Acid deficiencies. These include, to summarise:

a) Heavy and irregular periods

b) Auto-Immune disease

c) Endo around or on the bowel area causing damage to the bowel that reduces ability to absorb nutrients

d) Endo around or on the bowel area causing inflammation and irritation that affects the ability to absorb nutrients

Now, I cannot say for definite that I am right. All I can suggest is that if you are interested, and want to know more, YOU go and do some reading for yourself. That way, you are free to interpret and understand things in your own way, and make sense of your own circumstances. I just hope that I may have pointed you in the direction of some useful and helpful information.

Most of all, DON'T WORRY EXCESSIVELY... as you can see, there are others of us who are "in the same boat". For sympathy, and empathy, visit this Forum. It's GOOD to talk!

Take care... best wishes to all of you,

Elaine Ellis.

cath-27 profile image
cath-27 in reply to Scooteeder

Hi Elaine, i cant thank you enough for the information i have just read in your post, i had endo just on 2yrs ago, had it removed, but am almost certain it has came back on my bowels, i have also been feeling very low in energy, didnt stop to give it a thought that this could be connected, i have just been given gnrh injections as pain killers, plus the side effects of these injections are the symtoms of the menopause. Reading ur information has made me feel much better, thank you x

in reply to Scooteeder

Hello Elaine,

My goodness you are a wonderful fountain of knowledge. Can I ask you a few questions?

If your haemoglobin levels are within the normal range can you still be anaemic due to a a B12 deficiency?

If you have Endo on/in your bowel are you more likely to have problems absorbing B12?

During my heavy periods I get sore cracks in the corners of my mouth ( I don't get them at any other times) I also feel extremely tired (ten times worse then my normal Endo fatigue) Could these problems be related to B12 deficiency?

And lastly am I right in thinking that a B12 tablet is not sufficient,( if I am deficient)and that injections are needed?

I was diagnosed with Endo in 1991. I also have adenomyosis, a fibroid and PCOS.

I hope you are well.

Barbara x

CharlieSays profile image
CharlieSays in reply to Scooteeder

I was just wondering if any of you ladies also have low blood pressure (I do) as I think there could be a link there too?

m.netdoctor.co.uk/diseases/...

Interesting website about B12 deficiency.

Scooteeder profile image
Scooteeder

Hi again,

Here to try to answer "Cuddlybarb"'s question (if I can)... I'm not so sure about "fount of knowledge"... more like "nerd with head constantly in books"! That's me!

Anyway, I've tended to make it a policy of mine to try to read up on things as much as I possibly can. Because I feel that Endo is a bit of an "unknown quantity", it sort of makes sense to me to "do my homework". That way, I can try to stay in control of the illness (as opposed to it controlling me all the time), and if I come across medical people who aren't up to speed with regard to Endo (and thus only offer limited treatments and assistance) I can challenge them, or I can make my own suggestions as t how I would like to handle things. Like I said, it helps me to stay in control (maybe I'm a closet "control freak"? Who knows?). Still, I much prefer THIS to having the Endo take over my life (which it can all too easily do!).

Right, here's my attempt at an answer (do remember it's only MY idea of things - and I'm no Doctor)...

1. B12 deficiency is caused by a different type of Anaemia to, say, Iron deficiency. There are numerous types of Anaemia. If you are low on Iron, this is IRON DEFICIENT ANAEMIA. A deficiency in B12 is more likely associated with Pernicious Anaemia. So, yes, you could have a type of Anaemia, even though your Iron levels are within acceptable ranges.

2. I cannot say for definite whether having Endo on/in your bowel will lead to a greater likelihood of problems absorbing B12. I would simply suggest that because Endo on/in the bowel can do some damage to the structure of the bowel, as well as causing inflammation and irritation of the bowel, it MAY make the bowel less capable of absorbing nutrients (which include Vitamin B12). The bowel is a very complex and sensitive structure, and I would strongly advise that ANYONE who has concerns about Endo on/in their bowel seeks the advice of BOTH an Endo Specialist, and also somebody who specialises in Bowel Disorders. That way, they can work together to ensure that the Endo is effectively treated, with minimal negative effects on the bowel. Many Endo Specialists consult with Bowel Surgeons where it is necessary to undertake Endo surgery on or around the bowel. Perhaps if you were to ask their advice as well, you would receive a better, more thorough answer? All that I can suggest is that any damage or irritation to the bowel may well result in unpleasant bowel-related symptoms - which is why many women with Endo on/in the bowel get problems with things like constipation, diarrhoea, bloating and gas. I would assume, therefore, that an irritated and damaged bowel does not function as well as a healthy bowel, and COULD lead to nutritional deficiencies over a period of time.

3. Tiredness and a sore, cracked tongue/mouth CAN be signs of B12 deficiency. Tiredness/fatigue is a symptom common in ALL types of Anaemia. As to whether B12 tablets or injections are more appropriate I cannot say. I would imagine that all cases are individual - some people may respond better to tablets than others do. I would have thought that if you have already tried tablets without success, then injections is the next way to go. The most sensible thing to do would be to discuss this with your Doctor, explaining exactly how you feel, your symptoms, and your concerns that tablets may not be meeting your needs/appropriate for managing your symptoms.

I really do hope that you are able to sort something out to help ease the problems causes by Endo and its symptoms - as well as any problems caused by illnesses that "come along for the ride". It seems to be a common theme, here on this Forum, to see women trying to cope with one or more unpleasant illnesses (including Endo) - trying to get on with their lives - but being frustrated by society's general lack of awareness and understanding.

All I can say is that I hope for all of you that this Forum helps - it does for me. It gives women a chance to talk, and to share ideas and support. Like I've said before THAT'S A GOOD THING!

Take care, Barb, hope this helps (you, and anyone else reading)...

Best wishes,

Elaine Ellis.

P.S. A couple of links...

1. About Anaemia - health24.com/Medical/Anaemi...

2. Vitamin B12 Deficiency - bupa.co.uk/individuals/heal...

O.K. I've done my "nerdy" deed for the day! Off to have a cup of coffee and a packet of crisps (it's Sunday... my healthy eating day off!)...

in reply to Scooteeder

Thank you Elaine.

I will definitely ask my GP about testing.

Enjoy your coffee..... You deserve it!

I'm enjoying chocolate! My GP prescribes it for pain LOL!

Thanks again.

Barbara x

Scooteeder profile image
Scooteeder

Oops...

Before I go, just a quick answer for "Charlie says" (LOVING the picture of the cat - is it by any chance yours?)...

Yet again... another example of a woman using her brain, and searching for a link that actually MAY exist. You are right to wonder about whether Endo can lead to low blood pressure; or whether the two may be linked.

I have tried to explain the possible link between having Endo, and having Anaemia - THIS link is the starting point. In turn, Anaemia can lead to further problems, one of which can be... yes, you've guessed it... LOW BLOOD PRESSURE!

In anaemia, where there is either too little haemoglobin in the blood, or there are fewer red blood cells than normal, low blood pressure can be an issue. Anaemia is cited as a direct cause of low blood pressure. Anything that affects blood volume can cause low blood pressure. Again, because Endo can cause anaemia as a result of heavy and prolonged periods, the body is loosing too much blood. This excessive blood loss can be yet another cause of low blood pressure.

Don't know if this helps, or makes any sense. It's the best way I could explain it... for a better explanation, try looking up some of the articles I suggested in other posts - or perhaps looking up Anaemia and Low Blood Pressure on a search engine. Just a thought.

Must dash, now... crisps and coffee awaiting!

Regards,

Elaine Ellis.

CharlieSays profile image
CharlieSays in reply to Scooteeder

Elaine, Yes that is my cat, Charlie! Your answer about low blood pressure makes perfect sense and I will read up on it - I've not been tested for anaemia recently, but will ask my GP next time I go. Thanks (hope the coffee and crisps hit the spot!)

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