Finding it tough to deal with ...

Posted Fri 17 Jul 2020 11.15pm by is__b

Hi, my name is Isa and this is my first post!

I’m 18 and was diagnosed with psoriasis last summer — I think it was stress-induced. I’ve lived with eczema my entire life and have had some rather serious and frequent flare ups, but for some reason I’ve found this one year with psoriasis incredibly difficult. I tried talking to my gp about how it’s affected my mental health since I think I might be depressed because of it but he didn’t really help.

In fact I’d had multiple appointments wherein I’d discussed the severity and the pain I go through because of how widespread my psoriasis was (had it all over my body and it is especially severe on my scalp) but I’d just been given new prescriptions... it took me 6 months and me crying to my gp about the pain for me to finally get referred to the Dermatology department at my local hospital.

Immediately after my check-up I was told that I should’ve been referred months prior because of the severity and I started light therapy that same week. Unfortunately because of coronavirus procedures I had to abruptly stop my phototherapy sessions and I’ve had to deal with my skin on my own and cannot continue for an extended period of time ☹️

Well . My scalp’s gotten increasingly worse but I’ve been trying a new treatment so hopefully that’ll work!

In all honesty I’ve just felt incredibly isolated all this time. None of my friends understand my experiences and I think they just pity me at this point. I’m reluctant to say but I just want to have someone around my age (preferably?) to talk to really who can relate!

Has anyone else had a similar experience in terms of getting referred to a dermatologist? My dermatologist himself had said that he found that many GPs don’t take skin conditions like these as seriously as they should...

And does anyone have any advice on how to deal with body image issues (especially because of scalp psoriasis and psoriasis on face and neck)?

Sorry for the long message! I’m glad I got this out of my chest though.

Thanks for reading if you got this far x

If anyone would like to talk, you can add me on Instagram! (p.aulinaisabel)

Posted Sat 18 Jul 2020 4.05pm by Mac

Hi is__b.

As you said it wasn't a great year to get help for any condition never mind psoriasis, because of the corona virus. I would try ringing and see if your dermatology department is operating again.

I think i would be trying a different GP, if i was treated the way you where, don't think you could get any worse. Is there no one close you can talk too about your condition and help with the depression. Contact Amber forum Admin they might be-able too help you.

When i read about some of the stories about GPs on this forum, plus what some say about my own GP, i can only count my self lucky in having had a great relationship with my GP.

Posted Sun 19 Jul 2020 10.47am by Kia

Hey, i hope all is well.

Im 16 and have been diagnosed with psoriasis for the last 5 years.

I can really relate to your issues with it on the scalp, face and neck as those are some of the main areas i have it.

Ive been given many different creams and medications but none seem to really help.

Posted Sun 19 Jul 2020 1pm by Ciclo

I ended up paying for a private consultation with a dermatologist as my GP surgery weren’t taking my concerns seriously. Like you, I was told I should have been referred far earlier.’

Light treatment made zero difference, I ended up on ciclosporin which did the trick, then moved on to Skilarence. I chose to come off it due to Covid, but have the option to go back on.

Scalp flaking and itching was awful, the best treatment I found was olive oil to soften and lift scales, then shampooing with Capsal.

I hope things improve for you soon x

Posted Thu 30 Jul 2020 1.27am by is__b

Hi Mac,

Yes, unfortunately this year’s been truly horrible for getting treatment but it’s alright, at least I’m healthy. I’ve called up the department but unfortunately I cannot continue my phototherapy for another year, but thankfully I can still stay in touch and ask for help anytime. I really would change GPs but I have to stay with this one out of convenience (distance).

I might contact the Amber forum admin so thank you for that advice!

And I’m glad you’ve had good experience with your GP!!

Thanks for replying haha I didn’t expect anyone to in the first place :D

Posted Thu 30 Jul 2020 1.32am by is__b

Hi Kia,

I’m so sorry you’ve had to suffer that long, I hope your psoriasis isn’t too bad these days! It really sucks, especially having them so visible for everyone to see right? I’m glad someone else relates but I’m sorry you have to go through this too.

I’ve been seeing some improvement in my skin these days, I think it might have to do with the amount of sun I’ve been getting these days as well as avoiding dairy? I’m sure you’ve heard this before but I felt like mentioning it since you said your meds haven’t been helping :(

I really hope things get better for you soon, I’m always here to talk if you want x

Posted Thu 30 Jul 2020 1.42am by is__b

Hi Ciclo,

I’m sorry you had to go through something similar as me when it comes to our GPs :( I’m glad that you got the treatment you needed in the end though!

I’ve actually never tried oral medications for psoriasis, only had topical meds! Luckily I’ve been doing well with these although I find them incredibly tedious. I’m happy your psoriasis is under control now though!!

Regarding scalp psoriasis, it’s getting better, I’ve been trying this with coconut oil since I like the smell better 😭😭 I absolutely hate the process but there’s nothing you can do I guess. I’ve also been prescribed with Capasal which is great for me since I can use it often!

Thanks so much for your reply, it’s reassuring to know that there are other people who have had similar experiences x

I hope you’re doing well!

Posted Thu 30 Jul 2020 4.13pm by PsoAdmin

Hi Isa,

I thought I'd reach out after Mac thoughtfully suggested you get in touch with us to see if we can help you. I am sorry to hear the difficulty you have had with getting a referral to a dermatologist, the cancellation of your light treatment and the impact your psoriasis is having on your body image. That is an awful lot for anyone to cope with!

We would be happy to help if you would like someone to talk to and can provide you with information and advice for your psoriasis. Our confidential helpline can be contacted by phone on 01604 251 620, email at mail@psoriasis-association.org.uk or WhatsApp on 07387 716 439 and is open Monday- Friday 9am-4pm.

I hope this helps,

Amber,

Psoriasis Association

Posted Sat 1 Aug 2020 8.29pm by Hayleyjane

Hello Isa

I can completely relate with you, I have been suffering with psoriasis on and off for about 5 years but my first flare Only lasted a few months. My current situation is that I am now covered all over my body with guttate psoriasis which is the random patches all over. I have had this flare for 2years now and only seem to be getting more and more. In the last 4 months I have also developed inverse psoriasis which is inside my ears and also near my bum which is very uncomfortable.

I also had a hospital appointment cancelled due to the virus and then I moved two towns away and so my doctors cancelled my registration with them and told me I need to register with a local doctor so I have to start all over again after two years of pushing and pushing for a referral and now I feel like I am back to square one.

My confidence has completey gone down hill and actually this summer feel relieved we are in lockdown as I feel I would not atall be comfortable to show any of my skin in public, I feel so fed up and want to cry every time I look in the mirror and find when I am at work I’m constantly looking at all my pretty friends and feeling so upset and ugly and disgusting.

I try and tell my family and boyfriend and they do support me but I don’t think they really understand to what extent it is effecting me.

Hayley

Posted Tue 4 Aug 2020 6.48pm by Atea1116

I’ve suffered since I was around 18 (32 now) and unfortunately ice had the same issues with GPs

My scalp psoriasis has caused around a third of my hair to fall out and ice become so depressed. I have 2 young children and will be returning to work after working from home due to COVID and it’s giving me such anxiety that people will see it as it’s so noticeable.

Keep going with the topical treatments and hopefully they will help and if not then they will likely try other methods

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