Exhaustion, eczema and endo?

Hi ladies,

This is my first post although I've been following the forum for a few months now. I'm 21 and have been suffering from symptoms since I was 14 - chronic stomach/pelvic pain, bowel problems, painful periods and lately I've developed back pain and painful sex. I'm in the middle of the worst flare up I've ever had and have been off work for three weeks.

My levels of exhaustion are ridiculous, I've hardly left the house and all I seem to be able to do is eat and sleep. No matter how much I tell myself I'll get dressed or go out for a while, I can't do it. Is it just me? How long can I expect this flare to last?

I haven't been officially diagnosed yet but my GP suspects endo as I've had these problems since my periods started and all bowel investigations came back clear. I've been referred to a gynae but NHS is taking so long that I've booked a private consultation next week. I've been put on the continuous pill but if anything it's made it worse, I'm covered in patches of eczema and my face is so spotty. Not sure if it's the extra hormones or just because I'm sick.

Feeling really depressed, run down and ugly and not sure how to get out of the state I'm in. Luckily my boss is so understanding (female) and isn't pressuring me, but I still feel guilty. In my head I'm usually active and happy and I enjoy my job, but my body is letting me down.

Sorry for the long post but I needed to vent and I'd really appreciate any suggestions for eczema and pain relief, nothing seems to be working. Hopefully the gynae can help and do a lap to finally sort this after 8 years of being fobbed off!

Thanks xxx

6 Replies

  • Hi hun, sounds like you're having a rubbish time with it all.

    Has your eczema been investigated? The reason I ask is because it may be confused with Dematisis Herpetiformis, which is a symptom of coeliac disease, along with bowel issues, exhaustion, head fog, mouth ulcers, joint pain... just wondered if you'd ever been tested for it (simple blood test)? Might be worth asking your gp for?

    I'd suggest looking on Coeliac UK website to see what you think.

    I'm coeliac but was misdiagnosed as having IBS and CFS/ME until the gp finally did a proper set of blood tests. A lot of women on the coeliac facebook pages have endo too & there does seem to be a connection between endo and gluten sensitvities.

    (P.s. Coeliac affects the villi in the gut, so bowel investigations wouldn't show it)

  • Hi, thanks a lot for your reply!

    I've had a coeliac test which came back negative, I'll ask my GP to check though when I see her next week. I was on a gluten free diet for a year to try and get rid of my symptoms - it helped a bit but they never resolved.

    I haven't shown my GP the rash yet, it's weird because it's not actually itchy at all, just looks horrible.

    Yeah I've heard that about auto immune stuff, sounds like endo ladies have a hard time with it all!

    Thank you for thinking of that, I'll definitely mention it to my doctor in case it's been missed xx

  • If you've been on a gluten free diet whilst tested, then it can give a false negative result, you have to have been eating it for a few weeks for the antibodies to show up on the test result. There may be things like b12 and folate levels you might need checked, as these cause pernicious anaemia. Coeliacs sometimes don't make intrinsic factor in their guts, it's what's needed to carry b12 across the gut lining. Folate deficiency can sometimes be masked by b12 levels too, so it's well worth getting them checked.

    All the best xx

  • I asked my doctor at the time if being gluten free would affect it but she said no.. I feel worried now that she was wrong.

    I guess it's lucky in a way because I've been eating gluten again the past few months so I'll get her to retest me.

    As far as I know all my blood tests etc have been fine but I think it's a good idea to check and thank you for suggesting something I hadn't thought of.

    Do you have endo as well as coeliac disease? Xx

  • *sigh* - yes, if you're not eating gluten it will affect the result, as the antibody presence is an indication of the body's reaction to gluten.

    I've been coeliac for around 8 years (well, I've always had the genes, but sometimes they're just triggered to show symptoms by a stress to the body, like pregnancy, surgery or in my case, a bad virus) and my gynae thinks I've got endo too, just waiting for a laparoscopy to confirm.

  • That's so frustrating, I wish they'd told me that at the time!

    I'm seeing a gynae next week as well as my doctor so hopefully I'll be better informed then.

    I hope everything goes well for you too hun x

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