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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think that my acne is a chronic illness?

137 replies

seemenowlater · 14/06/2021 06:06

It ruins my fucking life. I have really awful cystic acne. Everybody thinks it's just a cosmetic issue, that aspect is absolutely awful and debilitating in itself. People in public are disgusted by my face. I get bullied. People think I'm disgusting and dirty and assume that I don't wash. I've spent so much money trying different products, I've tried everything. I probably wash my face more thoroughly than most people do. That is agony though, anything with antibacterial properties causes severe stinging. I am trying to get a job in retail and am not getting any offers, and I get why. I look fucking disgusting so why would anybody employ me in customer service? Kids stare at me. I've never had any public comments but constantly imagine them saying "Mummy, what was wrong with that lady's face?" and I hate it.

But the pain, oh my god the pain is horrendous. It's on my back and face. I lay in bed crying sometimes because when I'm on my back I'm constantly putting pressure on the cysts, I wake up and my pyjama top is marked with blood and pus. My face bleeds all day. When I take my face mask off, it's covered in blood and pus. I have considered trying to get the exemption lanyard because masks rub on the acne causing open sores and make it much worse. When I worked in an office it was constant "Your face is bleeding" from colleagues. I'd be sat at my desk dabbing my face with tissue to stop the bleeding. I get it on my lips and round my mouth. The lip ones are so, so painful. My bottom lip will swell up, it looks awful and is agony. Eating hurts, drinking hurts, talking hurts. Right now I've got an awful one on the side of my mouth and if I open my mouth too much when talking then the scab opens and it bleeds into my mouth, it keeps happening and I've had it for 2 weeks because it won't heal. I also get ones on my cheek etc that have the scab break when I talk. I get it on my earlobe and sometimes inside my ear, when it's on my earlobe sleeping on my side is incredibly uncomfortable. I get horrible styes that go inside my eyelid and quite far up the eye, which are horrendous because I can feel it all the time. I get them around my nostrils, they absolutely kill. When I get them on my eyes, nose and mouth I'm always terrified the infection will get to my brain because those particular areas are closely connected to the brain.

Sometimes, my face is simply so overrun with cysts everywhere that it hurts to use any facial muscles at all. Sometimes I just want to kill myself. Whenever I try to vent to family and friends though, nobody gives a shit. "We all have cosmetic insecurities" they all say. They need to try living as I do because it's unbearable. My aunt has a common chronic illness and once used it in a conversation with me to argue that I should be grateful that my acne is all I have to worry about. Other people think it as well, "Oh the poor love has acne, boo fucking hoo.". I'm not claiming I have it worse than those who can't walk etc, obviously I'm lucky I have full mobility. But this still ruins my life, I can't help it and I'd give anything to stop it.

Even articles about it make me feel even shitter. It's all about how some celebrity had it and suddenly had the confidence to post pictures of it without filters. I saw a vile Daily Mail article stating how brave a celeb was for showing off her "horrific" acne. These articles just go on about it as a cosmetic thing, nobody seems to consider how utterly painful it can be.

OP posts:
somersault · 14/06/2021 19:26

Dear me this sounds horrific for you. Could you insist your GP makes a dermatology referral? Or pay even for a one off dermatology appointment?

sst1234 · 14/06/2021 19:30

OP, please push for Roaccutane. Nothing else works like it.

Rockdown2020 · 14/06/2021 19:33

I’m sorry that you are struggling. I’ve not got practical advice by I have had the exact same for years. It’s improved now thankfully but I can’t see a specific reason other than taking the pill and/or being pregnant which improved it massively. It’s a chronic condition and really impacts self esteem.

One thing I always think is if skin is the ‘largest organ’ than it should be treated as such. If you had large cysts all over your liver, lungs, bladder etc it would be taken very seriously and you’d not be blamed for not drinking enough water to cleanse it. It should be the same with your skin.

afaloren · 14/06/2021 19:37

In my experience the only thing that works is Roaccutane. It’s a rotten drug with horrible side effects but it can have life-changing effects.

Medievalist · 14/06/2021 19:38

Do you REALLY think she can write all of that and not have tried every single thing out there? Paid a fortune for products and seen every specialist?

The op talks about having spent so much money on different products and has tried everything. That to me suggests over the counter treatments as she shouldn't be paying for roaccutane.

She also talks about drs not giving a shit. Nowhere does she say she's seen a specialist. And speaking as someone who spent 10 years trying to persuade various gps to refer me to a specialist (whilst feeling suicidal with horrendous acne), yes I can believe she hasn't seen one. Hmm

TeamNegan · 14/06/2021 19:42

I’m 100% with you on this @seemenowlater. I have had acne now for over twenty years, since I was 11. I have tried absolutely everything that is available, all tablets, creams and even light therapy. I had a short course of Roaccutane when I was 15, it didn’t work and it left me with severe depression (an unfortunate side effect of the drug).

I find it absolutely debilitating, I can’t look people in the eye most days. Masks have made it even more difficult to cope. I dread summer because I can’t even attempt to cover it as it sweats off. It’s consumed most of my life Sad so I absolutely sympathise with you Flowers I just hope there will be a real cure some day.

chickennoodledoodle · 14/06/2021 19:51

Like others have said, this definitely is a chronic illness & I'm just sorry that you are experiencing this. You've really helped to educate me as well today so thank you. I pray you find a solution to the condition, it's sounds absolutely horrific tbh. All best xx

Greyhair59 · 14/06/2021 19:55

I sympathise, acne is horrible and can last for years. If you can afford it you can see a consultant dermatologist privately, without going through a gp. I did this for my ds and phoned a local private hospital which has a derm dept. Saw consultant within 2 days. He prescribed roaccutane - 6 months later skin is fine. Realise this can cost but if you can afford it its really worth it.

Libraryghost · 14/06/2021 20:02

I take a maintenance dose of roaccutane to keep my cystic acne at bay. I seriously only need 1 or 2 pills a week. The only side affect I have is occasional chapped lips which compared to acne is nothing. It changed my life and I am forever thankful for the wonders of modern medicine. Nobody should have to suffer horrendous acne anymore. As a side note my dermatologist told to chuck my acne skincare away. They do nothing but irritate cystic acne. A gentle cleanser, moisturiser and sun cream- that is all I use.

Ohhyeahright · 14/06/2021 20:40

Another one saying you must have roaccutane. It literally can’t not work.

MRex · 14/06/2021 20:44

Get a dermatologist appointment. If the GP won't help then switch GP surgery and ask the new GP to help.

FartnissEverbeans · 14/06/2021 20:45

I completely sympathise. I remember the pain and abject misery of cystic acne. It absolutely blighted my teenage years. I can only imagine how different my life would have been back then without it.

Roaccutane sorted me out. My skin isn’t perfect now but it’s fine with some topical treatments. I barely even think about it now.

Thepollonator · 14/06/2021 21:00

@Ohhyeahright well I've got living proof that it CAN work!

Iloveitall · 14/06/2021 21:09

Read your title and thought ‘no, of course it’s not a chronic illness like my child has to deal with, day in, day out’ but then read your post. You poor thing. I have no advice but I hope you can get it sorted. No one should live like that. X

opinionminion · 14/06/2021 21:32

You need a referral to Dermatology,
there is a drug called Roaccutaine (Quite a few contraindications, a seriously potent drug) but it can have amazing results if you fit the criteria. Seek another GP's opinion if your regular GP is not forthcoming with a referral Thanks

TheNinny · 14/06/2021 21:51

I’ve had bad acne and still have persistent but it’s not as bad. I went to gp at 25 and told
Him how It was affecting my self confidence which affected my interview confidence (I was between jobs at the time) etc. He did the whole birth control, few antibiotics etc but I was persistent in asking for a roaccutane referral. I eventually got seen. The dermatologist was a bit eye rolly as my skin wasn’t that bad in his words. But I told him that it never gets better than this, I’m 25 with skin like when I was a teenager and he prescribed it right away. My skin cleared right up but slowly and surely it came back. Not to the level it was before but still annoying. I give up but can cover with make up etc so I don’t mind too much.

I’m sorry your skin is the way it is. I msendinf a virtual hug to you. I still get cystic break outs sometimes at totm and it is painful. When I was a teen I got bullied for it and i remember a group of boys pointing at me and shouting eww while I was at a swimming pooI once and it still affects me when I remember sometimes. I used to get so down and have similar thoughts to yours. I haven’t read whole thread but if you haven’t gone to a dermatologist please do all you can to go or consider private referral.

Duchess379 · 14/06/2021 21:53

Just wanted to send you love & hugs. 🥺💖

Motiv8meplease · 14/06/2021 21:56

Sending you all my support and strength. Agree with other posts here - insist on a dermatologist referral, you need specialist treatment. I’ve been on two courses of Roacutane - they were effective but the side effects weren’t well explained. I would though advise you read up on the side effects so you’re aware of what they are. It can have major impact on your moods.

Waiting list for dermatologists can be long.

Another option whilst you’re waiting for a dermatologist referral is Dermatica website. You complete a detailed questionnaire and provide photos. A dermatologist reviews your case history and photos and provides a prescription strength topical cream. I’ve been using it for the last 4 months and it’s transformed my skin. www.dermatica.co.uk/treatments/acne

Keep us posted and I hope you get the help you need

baldafrique · 14/06/2021 22:04

Could you afford to go private? My consult was about £200 but the actual Roaccutane wasnt that expensive at all really (it used to be killer expensive but now its generic so way cheaper). I also had a significant history of depression and my dermatologist still prescribed to me as could see the impact it was having. Best doctor I've ever seen. Happy to recommend if needed. Lifesaver.

baldafrique · 14/06/2021 22:05

Ps I've had about 4 full courses over the past 15 years (under same private derm) and various maintenance courses in between. Absolutely best thing Ive ever done. Nothing else touched it for me.

beeloubee · 14/06/2021 22:10

Echo seeing an expert. Stop being passive and do something proactive. I wish you well x

Ohhyeahright · 14/06/2021 23:35

@Thepollonator read my post again

Claireshh · 14/06/2021 23:56

I remember the pain of my cystic acne and spots bleeding through my clothes. It was horrendous. I tried everything available over ten years. Eventually I asked for a referral. The dermatologist said ‘you’ve got severe cystic acne’ he prescribed Roaccutane. It was a miracle treatment. My lips peeled and my skin on my arms and legs was very dry but tgat was a doddle to deal with in comparison to the acne. I had a second course a few years later when it flared up. Since then my skin gas been pretty normal. It was life changing for ne. Please ask your GP to refer you. Xxxx

StuffinThePuffin · 15/06/2021 00:01

Christ, stop asking her if she's tried XYZ. We hear it all the fucking time from everyone, even people who have never actually suffered from acne.

Accutane doesn't work for everyone.

Draculaswedding · 15/06/2021 00:04

It’s not something I know much about or known anyone who suffers with but from your description it sounds like a chronic illness and very distressing. I hope this thread helps you push for appropriate treatment. It sounds absolutely awful and something that should be taken very seriously. I have a genetic condition. It’s not going to kill me but bloody hell the pain, the exhaustion and the constant problems one after another are debilitating at times. I’ve had to push for appropriate care.

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