To feel like eczema is ruining my life

[JigsawDogg]

I am in my 30s and for the past 2 years I have suffered with eczema inside my ear canal.

Due to the location it causes repeat ear infections and is extremely difficult to treat.

I go to the doctors every two weeks for them to remove as much as possible but to be honest I think I need to stop with this as it's causing my canal to swell and restrict my hearing even further.

I am so fed up. When I wake in the morning after lying in bed all night I cannot hear a thing, I mean I can literally look at DH whilst he's talking to me and just see his mouth moving. This lasts until I've been up and walking around for about half an hour.

Throughout the day I can hear but it's definitely restricted and my ears 'pop' constantly throughout the day.

The past two years have been a constant stream of antibiotics and steroids drops/creams/tablets and nothing works.

I am miserable with it and so concerned about my hearing as last time I saw the doctor she finally saw my ear drums (they are rarely visible) and said they had quite significant scarring.

They tell me there is no cure, of course I know there is not for eczema, but AIBU to think there must be something else we can try?

I have had no referrals to the hospital despite the occasional mention of one after me asking but am always told they don't have the staffing in that department at our local hospital so they can't send me there.

I second the gladskin recommendation. Its got clinical trial data, its not just another quack cure. It has transformed our dds life, she used to need systemic antibiotics practically monthly but now is pretty much clear. Not cured - we are still on twice daily moisturiser all over and we dab the gladskin on any raw patches, plus steroid cream when necessary - but the difference is still astonishing. It only works on staph-based eczema, and costs a fortune, but its definitely been a game-changer.

Slightly different i know, but i was suffering from major psoriasis on my feet and hands for which my gp was treating me but ineffectually, so i saw a consultant dermo privately. It was a revelation. My gp had misdiagnosed, within 2 months i could walk without pain and my hands stopped splitting due to the regime he put me on. It was the best 300 quid i've ever spent! You really must see a consultant. Your gp is not qualified to treat this and they are making a mess of it.

OP have you seen a dermatologist? I had awful eczema on my hands, like skin coming off and everything infected and oozing. They gave me arthritic ulcer wraps that keep it under control when it flares up. You will not have been the first person with this problem. Sending you hugs! I know how awful and painful it is!

I'm thinking of telling them I can keep doing these cleans anymore.

Continuing with a course of treatment that isn’t working and is exacerbating the problem is pointless. Your GO can not refuse a referral based on the inconvenience it is to them. You need to start demanding and raising merry hell.

I had to take my son private to get seen because the waiting lists were insane on the nhs. He was referred for immediate treatment in the nhs and started it within a week. Cost £250 but when your child is crying day after day and missing school because of constant infections you do what you need to do.

He is now on methotrexate but that is a very last resort. It's not a drug to be taken lightly and can have long lasting effects. Especially if you want to get pregnant. You can't while on it and for at least 6 months afterwards.

Also you still need topical treatments to use along with it. It's not a miracle drug where you take it once and your cleared.

Before you start it you need bloods and chest X-ray. Then you need weekly blood tests to check the effect the drug is having on your organs. You also need to be on folic acid to help counteract the side effects. Both medications are only once a week.

A decent dermatologist won't even consider going down this road till you have exhausted almost every other avenue.

Looking into a dietician and keeping a food diary may help. You could be suffering symptomatic eczema as a reaction to something environmental also. All this needs looking into before you even consider such drugs as methotrexate.

I'm thinking of telling them I can keep doing these cleans anymore

Sorry this should have said can't keep doing these cleans.

Thank you for all the replies and suggestions, I am reading all of them with interest and trying to do some homework myself.

You could be suffering symptomatic eczema as a reaction to something environmental also

I have had an extremely stressful time for the last few years with fertility issues and pregnancy loss so I have no doubt it flared because of this.

I am a lot better and less stressed now but it hasn't gone down at all.

Is it worse at certain times of year? I find change of seasons ie winter to spring and autumn to winter are particularly bad times for my son.

Maybe keep a diary. You could well still be stressed but it's become so frequent to you you don't register it any more. Note foods, activities, weather and how your eczema is and see if there is anything that you could look at with a specialist as a possible trigger.

Hi again OP, I was just thinking of a couple of simple things that help me (but I know we are all different).
I try not to let my ears get too hot or cold. If they get hot they get very sweaty, which is very uncomfortable, so I don't wear hats in the winter. On the other hand if they get cold that is also painful so I have been known to drive even short distances in bad weather.
I also try to keep my ears dry. I know pp have mentioned drying them carefully, but for me it's too late when they have got wet. My doctor explained that water causes the debris in my ears to swell and that seems to happen very quickly. I use little ear covers for washing my hair, not perfect but I have got quite practised at keeping my ears dry. I also avoid swimming (which I love) if I have any eczema at all in my ears. I can't tolerate eat plugs, unfortunately.
Stress affects my eczema too, but that's hard to control. I get it on my face and scalp, which looks unsightly, which causes more stress!
I wish you luck OP.

If the doctor is continuing to be useless and give you a referral, could you pay to go privately? Would probably be between £150-£180. ENT consultants have a special device that they clean eczema out of the ear with and then they coat the ear canal with an ointment.

In terms of washing your hair put some baseline on cotton wool and put it in your ears before washing your hair. The Vaseline is a barrier to water and will help keep the ear canal dry which you need.

Sorry that’s meant to say Vaseline

I struggled with huge eczema flare ups, go just couldn't handle it, they just prescribe steroids after steroids.

I was referred to a dermatologist who has access to all sorts of tricks GPS in nothing about. She has changed my life.

She has access and knowledge Gps just don't have.

I haven’t RTFT but I had this as a child and saw someone privately who sort of ‘hoovered’ my ears out and gave me a course of meds and it was sorted! Not sure that helps... I would rec omega 3s and probiotics esp as the antibiotics worsen it. Also try the wax ear plugs for the shower I found they worked well.

You need to insist on two referrals - one to a dermatologist and one to an ENT/audiologist team

I was prescribed elocan ointment which is a steroid cream plus antibiotics and my ear excema cleared up , following a vegan diet helped. I’m now excema free - touch wood.