Endo, fatigue... Feel like your losing your marbles.

[Xenadog]

Hi all, new to site but stage 4 fellow endo sufferer.

I went my GP on a regular basis for 6 years saying that the fatigue that I had wasn't normal for my age (currently 39) only to be told that, in a nutshell, I was in a routine of "feeling tired" (even though I managed to have 2 children and work full time so fat chance of having a "tired" routine) Basically I was fobbed off with them saying I was lazy and it was all in my head.

Visited GP several times in last few years saying that it wasn't normal for a woman my age to be like I was.

long story short....

This year I had had enough, so insisted that they run blood tests in relation to my hormone levels because I was thinking it's related to the horrible endo. To cut a long story short, the tests were eventually run and have now been diagnosed with Vitamin B12 and folic acid deficiency which I have an injection every 3 months for and folic acid tablets daily. So turns out it wasn't hormone related but at least it spurred the GP into doing some tests.

Wow what a difference, apparently the B12 deficiency is historically only checked in old people ie over 70s but is getting to be a problem for more and more younger people, I can really recommend pushing the GP for this test, it's changed my life. Granted I still have horrendous Endo pain but no longer have the chronic fatigue or memory problems that I had pre diagnosis (well, it does return when I am due for the injection) which in itself helps you cope with the daily pain better.

It's really worth pushing for the test, it's a simple blood test but can be life changing. Living with endo pain in itself is a nightmare but having b12 deficiency too is life changing, but trust me, with diagnosis, you can get your life back, it won't fix the endo but it will certainly help you to be better equipped (not so tired and grumpy) to cope with the pain.

Hope this helps, it's certainly changed my life for the better.

Hate injections but one injection to give me weeks of relief is from the fatigue and related memory problems is soooo worth it.

Good luck all. X

[Bugsy1806]

Thank you for posting this as I too have been fobbed off regarding fatigue! I will ask my gp for the tests and hopefully get a resolution

[Kle123]

Has anybody experienced this as a result of an injury??? Mine has become terrible since injury...

[Hidden in reply to Kle123]

Mine came on after I broke my back a couple of years ago. Been diagnosed with having cfs/me now on top of stage 4 endo and adenomyosis!!!

[Betsy2712]

Thanks for this - I have recently become very tired in the last 6 weeks only. Have had endo confirmed for 15 years. Not sure if the tiredness coincided with an awful period like I used to have in my teens. Usually I am full of energy, I do work long hours so maybe work (and age) catching up with me

Glad you are feeling some relief

xx

[Xenadog]

My GP said that b12 deficiency is normally associated with old people and as such they don't normally test for it, so you may need to push them for the test, it's just a blood test. He said that he's seeing an increase in younger people with it ie under 60 so it was worth a go for me, thankfully I struck lucky and got diagnosed. There are a couple of ways to treat it

1) through your diet

2) taking vitamin supplements for life

3) a two week course of injections to get your levels up and then an injection every 3 months for life.

I was just below the level but he put me straight to the injections and OMG what a difference in 3 months. I used to have symptoms similar to that of mild Alzheimer's ie forgetting what I was saying in the middle of sentences, not knowing the word for things like a motorway, putting keys in the fridge etc etc plus the horrendous fatigue. It wasn't that I had to sleep there and then but just pure exhaustion. Now I'm back to just to being a bit dipsy but that's quite normal.

The thing with B12 is that often it's that the vitamin just can't get digested through the stomach so in some cases the diet and tablets option won't make the slightest difference

Hope this is of help to you all.

[kyla78]

That's really interesting thank you for posting this I was considering asking about getting b12 checked as I'm always tired

[Scooteeder]

Hmmm...

I totally understand where you're coming from, and it's great that you're putting this info out there. Many women with Endo go on to have other problems as well - one of which is Anaemia.

I have Endo, and for years I've also suffered with low haemoglobin and low Ferritin levels (Iron deficiency). This has always been put down to my heavy periods, which COULD be the case. However, after reading up a bit, I also noted that B12 and Folic Acid deficiencies can be associated with Endo. These can also be associated with a type of Anaemia called Pernicious Anaemia. The symptoms of many different types of Anaemia can include the fatigue and chronic lack of energy that seem t be so common in Endo sufferers.

So, it is perhaps a good idea for women with Endo to be checked for these problems. I'm probably going to have to push my G.P. for such tests - especially as the excuse of "heavy periods" causing Anaemia has been the staple for so long! I've been given supplements such as Iron tablets and liquids in the past, but never manage with these. I find them impossible to stomach, and they tend to make me extremely queasy! I also have bowel problems, associated I believe with my Endo, and Iron supplements make them a heck of a lot worse! Makes me wonder if I'd be a candidate for injections?

It's such a pity that medical professionals can be so ignorant! Age shouldn't come into it. I mean, look at all that business with Jade Goody. She was told she was too young to have Cervical Cancer - yet in the end she DIED of it! Too young, indeed! Doctors need to consider ALL the options, even if they do not seem to be the most common. THAT might actually be a big help to us women with Endo!