Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to feel like this is ruining my life.

99 replies

wetskin · 08/02/2023 22:09

I have posted about this a few times on here before name changing- I last posted a few months ago (I think? I can't remember exactly!). I just wanted to start a new thread as its changed since then.

unfortunately its gotten much, much worse and im losing the will to live now. I feel so depressed and miserable and I hate my life so fucking much now. Its embarrassing, painful and im actually frightened that nothing seems to be helping it.

I have a skin problem on my scalp which causes patches of my skin to become red, open and wet. its as if the skin as been completely abraded off it, like in a skinned knee etc. Im not scratching it either - I have no nails as im a biter and I wear gloves anyway in case I was rubbing it during the night but im not.

It started out of the blue 3 ish years ago (I had no skin problems before) and then got really bad and was in my ears, face etc. Because the skin was permanently open wounds, it also got infected constantly. I've had around 8 different antibiotic prescriptions for it in total. I've also had different anti fungal treatments- everything from shampoos to solutions to oral tablets. I've had steroids- topical and oral. Some treatments made no difference. Some helped for a short while then it returned.

Its not going away. I've been seen by a dermatologist who diagnosed it as psoriasis. But other healthcare people have told me it looks nothing like that and now I feel so confused. Its not dry or patchy- its like huge big raw weepy patches of skin.

My problem now is that previously it was mainly around the back of my head, which was bad enough but bearable because it wasn't obvious, but its suddenly spread and is across my entire scalp now, including the top and at my hairline. its everywhere and getting worse. I dont really have much skin on my scalp at the moment- its probably 95% open wet wound. it looks as if someone has shaved the majority of my skin off.

I just want to scream, im so fucking fed up with this. I believe the doctor that its psoriasis, but it looks nothing like it and nothing so far is helping it. Its not like silvery plaques like in psoriases on google- its like huge wet open wounds. My entire head is sticky because my scalp is leaking stuff.

im at a loss. my doctor is at a loss. im waiting to see the dermatologist again and Im so frightened. is this going to be my life now? I know it sounds dramatic but its not just the embarrassment side, its excruciating and I can't lie down at night or have anything touching my scalp.

I just wanted to vent, and to post on here one last final time in case anyone is going through similar and has any advice I could try. I know some people have much bigger problems than this but its destroying my life right now😥

OP posts:
TokyoSushi · 08/02/2023 22:13

I remember you and I think I've seen your picture of this and I'm so sorry, it looks absolutely horrific for you and must be so painful.

I don't have any solution for you but just keeping your post bumped and hopefully somebody more knowledgeable will be along soon Flowers

Namenic · 08/02/2023 22:13

I’m so sorry you are going through this. I hope the dermatologist will be able to see you soon.

Dragonsandcats · 08/02/2023 22:13

Oh, this sounds awful OP, I’m so sorry you’re going through this. If you don’t get any answers, and effective treatment, is it worth googling to find skin condition experts and see if you could get a private appointment with them? Maybe the GP and dermatologist haven’t seen a case like this before but someone else might have. All the best as it sounds so hard right now.

mrssunshinexxx · 08/02/2023 22:15

I'm sorry you are going through this is sounds really difficult. Do you have the means to go private ?

AreBearsCatholic · 08/02/2023 22:17

I had impetigo on my scalp and it was like this, but I don’t know if you could have it for as long as you have had it.

Valhalla17 · 08/02/2023 22:17

Are you in or near London OP? I would try and see Dr Emma Craythorne at One Welbeck. I saw a colleague for a bizarre skin complaint and got it sorted by one of her colleagues actually...but if you can see Dr C I'm sure she could help.

PurpleButterflyWings · 08/02/2023 22:19

That sounds dreadful. I'm so sorry you're suffering so badly. ❤ Have you been prescribed any psoriderm cream? I've got a friend who had something similar and it was very bad psoriasis and she was given that - and it did help quite a bit.

Also, bizarrely, being in the sun actually helped it... Is it possible you could get a sun lamp? To maybe just pop your head under that for 20 minutes a day. Anything is worth a try Flowers Take care...........

Pokerprincess · 08/02/2023 22:22

Hi, I remember your previous post too and it sounds so awful for you. I had a friend who had really bad eczema that the doctor couldn't consistently get rid of and she went to a Chinese herbalist and it was the only thing that helped. I don't know if that is an option. I really hope you find some relief.

Cuppasoupmonster · 08/02/2023 22:24

How horrific, I’m so sorry you’re having to live like this. Can you post a photo maybe just of a small section of the skin, perhaps somebody on here might recognise it? And we can keep bumping. It sounds like torture 💐

Diverging · 08/02/2023 22:25

Sounds awful sorry you’re going through this. Most skin problems are manageable eventually and not likely to last for ever and a good experienced dermatologist should be able to help.

QuizzlyBears · 08/02/2023 22:26

I really feel for you. Is private dermatology an option? Also, I appreciate this might seem difficult, but could you ask a hairdresser what they think? A decent hairdresser will have a fair idea about scalp condition and might have some thoughts about next steps.

Crimsonripple · 08/02/2023 22:26

Yes psoriasis loves the sun. Sadly yours does sound like it's that. Someone I know has medicated shampoo to help. I've also read that sunbeds can help but this might be painful currently if your scalp is so bad. Push to see a dermatologist. They can't expect you to just live like this!

Mysmallgarden · 08/02/2023 22:29

This sounds really awful for you and I'm sorry it's happening. Would you consider buying a wig until you can get a proper answer and medication?

Caplin · 08/02/2023 22:32

Sounds awful, I had this for a while, not everywhere, but weepy patches. My MIL also has it.

things that help are sun (or sun beds), you can get Dead Sea shampoo, the high salt content helps, or Polytar shampoo. None are a silver bullet but do help to calm things down.

also look at anything causing stress, hormonal changes etc.

LoveMyADHD · 08/02/2023 22:37

@wetskin have you done full blood test?
potentially a significant vitamin deficiency?
really worth pursuing with GP

Tilllly · 08/02/2023 22:38

Has no one done a biopsy?

I have random skin flare ups (nothing this horrific)
My dermatologist often says even they can't identify many things and it can be trial and error. But if they've tried 2 treatments, they biopsy whatever it is, unless it's on my eyes

JussathoB · 08/02/2023 22:46

Valhalla17 · 08/02/2023 22:17

Are you in or near London OP? I would try and see Dr Emma Craythorne at One Welbeck. I saw a colleague for a bizarre skin complaint and got it sorted by one of her colleagues actually...but if you can see Dr C I'm sure she could help.

This
or if that’s not possible push push push to get to see dermatologist and possibly second opinion. I’m so sorry you are suffering like this.
if it is psoriasis I believe special coal tar treatments can help and are used in some hospital dermatology departments.
there are other auto immune conditions which can cause problems on the scalp and sometimes steroid treatments are recommended or anti -inflammatory medicines. I hope you get some help soon.

OptimisticSix · 08/02/2023 22:46

It might be worth trying a change in diet, maybe try the Autoimmune Protocol Diet (AIP) or Carnivore.

Wiluli · 08/02/2023 22:46

That sounds like empertigo or psoraris . Have you been seen by an allergy specialist ? That seems a lot like a reaction or a hormonal alteration maybe ?
hugs

Cremeeggeater · 08/02/2023 22:46

I'm so sorry this sounds totally awful for you!
I'm not sure if this is any use to you and its a bit of an extreme solution and may not apply to you even but I think my bf had something similar to this a couple of years ago when he grew his hair out long (hos hair is also very thick). I would describe his as extreme, wet dandruff, it was like wet tissue paper peeling off his head with raw skin underneath, it never got infected thank God I feel so sorry this is happening to you. His only went away when he cut his hair short again, he also stretches out time in-between shampooing now, I don't know if thats helped but his problem hasn't come back. Again I don't know even if this is the same thing as you as he didnt go to the doctor, and it was never as severe as what you described but I just wanted to offer the little bit of advice I have. I wish you the best!!

Helpisneeded100 · 08/02/2023 22:47

I am so sorry to hear how this is impacting your life. I have not experienced this myself however I have had other skin issues, rosacea which has been helped by focusing on my nutrition. This may be worth a look for you? I’ve attached a link to a nutritionist I have worked with and Michaella offers free consultation calls and is excellent, so could be worth a try? I hope you find a solution xx

www.michaellamazzoninutrition.com

wetskin · 08/02/2023 22:48

I’ve attached a photo of it here- it’s not the best photo sorry and I had to sweep my hair to either sides to show my scalp but because of that my hair covers up the rest of my skin but you get the idea- this is what it’s like across 95% of my scalp now. It doesn’t show up clearly in the photo but it’s all raw and weepy- if you touch it it’s actually wet and sticky and it’s leaking across my entire scalp. It’s so horrible

OP posts:
MotherOfPuffling · 08/02/2023 22:49

Caplin · 08/02/2023 22:32

Sounds awful, I had this for a while, not everywhere, but weepy patches. My MIL also has it.

things that help are sun (or sun beds), you can get Dead Sea shampoo, the high salt content helps, or Polytar shampoo. None are a silver bullet but do help to calm things down.

also look at anything causing stress, hormonal changes etc.

I think polytar has been withdrawn, but T gel do a coal tar shampoo that’s pretty good.

wetskin · 08/02/2023 22:50

sorry I forgot to say- I’ve tried all the nutritionist/dietary changes etc and it had no affect on it unfortunately x

OP posts:
LoveMyADHD · 08/02/2023 22:51

Oh bless you that’s awful…
i so much agree in the comments above related to diet/allergy (hence my comment on blood test)

is it worse some days more than others ? Would you consider temporarily removing trigger foods ?