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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:
TheWashingMachine · 14/06/2021 15:19

My mother had acne like you, she is nearly 80 and has only relatively recently achieved clear skin, although she still has very oily skin. She endured many years of terrible comments and suffered with terrible self esteem issues and developed an eating disorder as it was the only thing she felt she could control her body. That almost killed her. She tried everything but not Roaccuntane. In the end she was put on some very strong antibiotics that they use for people with chronic post surgical infections and it helped, plus she was in her 70s so I think maybe things naturally calmed down.

However, I do think had she had the combination of the super powerful antibiotics, Roaccuntane and Yasmin she would have been a lot better off. She saw countless experts but a female dermatologist was the one who really helped her.

OP you have all my sympathy, I've seen how bad acne can blight a life and have a long term impact on physical and mental health and wellbeing. Some doctors have no idea.

TrickyGoldfinch · 14/06/2021 15:46

I suffered from terrible acne from the age of 6 (primary school was hell), was bullied relentlessly and constantly told I was dirty, didn't wash my face etc. I saw countless dermatologists and was prescribed endless creams and antibiotics, none of which worked very well. After about 15 years I discovered I had a cow milk protein intolerance, specifically A1 protein. I now drink plant, goat, Jersey or A2 milk and avoid high protein dairy products like yoghurt and cheese as they are guaranteed to aggravate my skin. For years I was told by doctors that blue top cow's milk was good for my skin, clearly not in this case! I second others saying to ask for a referral to a dermatologist, GP shouldn't be dismissing you as this is a real issue that is affecting your quality of life. I thought I'd suffer forever but please know there is a light at the end of the tunnel, you don't have to live like this and there will be a solution out there for you.

HermioneKipper · 14/06/2021 15:52

You poor thing. It really is awful. I had horrendous skin when I was younger and went to a private dermatologist after nothing the GP prescribed worked. I got a course of roaccutane which changed my life

Blueeyedgirl21 · 14/06/2021 15:55

You need referring. Can you email this post to your gp? Could you maybe borrow money off someone or even stick a private consult on a credit card. To get the ball rolling. I could help you find someone private if you said where you live. It’s a medical condition and you don’t have to live like this.

ArabellaStrange · 14/06/2021 15:58

Here is a link to the NICE guidelines regarding Acne.
cks.nice.org.uk/topics/acne-vulgaris/management/primary-care-management/

Sadly they are only guidelines and not rules. Also there are many people like myself for whom Roaccutane is not an option due to mental health reasons.
Which is why I am trying a lot of stuff that would not be recommended by a GP, because they don't think outside of the box.
To be fair they don't really have the time to but it would be great if they did.

LondonJax · 14/06/2021 16:27

People who don't have this - or rosacea which is what I had - really don't understand the pain that it causes. I could cope (to a certain extent) with the redness and pustules that went with my rosacea, but when you can't wear a polo neck or crew neck jumper in the winter because pulling it over your head makes your face feel like it's been sandpapered it is truly awful. The only thing that finally worked for my rosacea was Soolantra and I stumbled on that by pure chance when the GP had exhausted practically everything and the one thing that did work, stopped working.

Have you definitely had cystic acne confirmed? As everyone has said, get back to them and ask for a dermatological referral. GPs are exactly that - General Practitioners. They can't be expert in every field which is why they refer on. Time to insist that they do that for you.

Good luck

JudgeRindersMinder · 14/06/2021 16:36

YANBU at all. I really feel for you. My DS has been going through hell with cystic acne too. We ended up seeing a dermatologist privately just to speed up the process. He’s been on roaccutane for 4months now, and it’s making a difference.
He used to phone me at 3,4,5am when I was on nightshift, on the verge of tears as he couldn’t sleep for the pain. He still has a way to go, but at least he doesn’t have the pain now

PigeonStreet37 · 14/06/2021 16:38

Oh love! I 100% empathise with you. I stupidly waited until my 40’s now after seeing so many GP’s and spending a fortune on so many pills, lotions and potions. Someone on here recommended Dr Sam Bunting (Google Dr Sam’s), I saved for 6 months and travelled 300 miles to see her. 2 years on my skin looks better than ever, and I actually look younger now too that lines/scars have faded. Highly recommend her website and I also use her products which make it easy for me to manage. I am on co cyprindiol (Dianette) which has made a massive difference to backne and that doubles as a contraceptive too so that’s free on prescription.

Wishing you strength and determination to get the help you need. Don’t wait and miss out on years of your life like I did. I missed weddings, dates, work, nights out even sex with my husband because I was so ashamed of acne! 💐

HoppingPavlova · 14/06/2021 17:19

I refuse to believe you have tried Roaccutane and it hasn’t worked. If it’s as bad as you describe you will no doubt need intermittent courses.

Firstbornunicorn · 14/06/2021 17:43

I almost cried reading this, OP. My brother was the same. He would wake up in the morning covered in blood where the cysts had burst in the night. His back was always the worst. He had every medication going, but tbh, he wasn’t that compliant with treatment. He decided against Roaccutane because he knew he wouldn’t keep it up. It was hard to watch because it really did affect his life.

Last year, a high-profile doctor came to a work event he was at and asked when he’d first been diagnosed with coeliac disease. He was baffled. She pointed out several signs and urged him to cut gluten.
Again, he probably isn’t 100% compliant and “cheats” often, but he’s seriously cut down on his gluten intake and his health in general is so much better. His skin is clearer, but not completely clear, and he had digestive issues before that don’t bother him as much now. He’d probably be doing even better if he could stick to it properly.

OP, I’m not saying this is your issue, but I really hope that someone, someday, comes up to you with a random and accurate diagnosis.

aibubaby · 14/06/2021 17:52

Lots of people can't take roaccuntane. So don't feel discouraged if you're reading these recommendations and you're one of them OP.

Definitely ask for gut health tests ans also try spearmint tea which has anti-androgen qualities and therefore can work well for hormonally driven cystic acne - 2 cups a day makes the biggest difference to my acne out of anything I've tried, including mega strength antibiotics. If you're trying to conceive or have liver or kidney issues, though, check with a doctor first.

(I know this sounds very herbalist and nonsense - but I took some studies to my doctor to check it before I tried it and they were impressed at the potential, said it was safe for me to try, and now I never miss more than 1 day of it or my skin flares up much worse).

Middle123 · 14/06/2021 17:53

See your doctor again! And if they don’t listen, demand to see another one & another & another, until you get help. I feel for you so much! I had bad spots as a teen & early twenties. Nowhere near as bad as yours but it still affected my confidence so much, so I can’t even begin to imagine how badly this is affecting you.

Keep bugging the doctors until they help you. Nobody should have to suffer like you have been when there is help available.

Matildalamp · 14/06/2021 18:38

I don’t have any advice, but just wanted to say I’m so sorry the people in your life don’t support you. Is there anyone who does? Anyone at all you can talk to? There are so many support groups out there, but when the people in our lives are unsupportive, and don’t see the things we face, it can be very lonely.

And I absolutely know you shouldn’t have to do this. But could you take what you’ve written here, and say “here, read this, this is my life”. Ask them to really listen and see where you are, and the pain you’re in? I don’t know, maybe that won’t work. Maybe they’re all idiots.

BiggerBetterHealthier · 14/06/2021 18:47

Sorry but those who are suggested various treatments and "have you seen a dermatologist" are clearly not reading what the OP has written.

Did you read her words?

Did you take in what she said?

To suggest treatment or referrals is belittling, patronising and minimising what she is feeling.

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?

Of course she bloody has.

She WASNT ASKING FOR ADVICE.

She was asking if she was justified in feeling as low and awful as she does with an issue that effects every single part of her life.

And for people to ignore that with their stupid patronising Aunty Advice are just as bad as those that stare.

BiggerBetterHealthier · 14/06/2021 18:48

I'm not surprised she replied once and never came back. Hmm

QuestionableMouse · 14/06/2021 18:53

Re the mask thing - absolutely get an exemption card. I wouldn't judge you for not wearing a mask when your skin sounds so sore.

When I had sunburn (which I know isn't the same at all) I bought a gel face mask that lives on the fridge and the cold was really soothing. They're not too expensive and might be worth a try? www.amazon.co.uk/Cooling-Full-Face-Mask-Puffy/dp/B071J27JLB/ref=asc_df_B071J27JLB/?hvlocphy=9046823&linkCode=df0&hvptwo&psc=1&hvnetw=g&hvadid=309924639348&hvpone&hvlocint&hvpos&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforu03-21&hvtargid=pla-441315950782&hvrand=14344005498193730371

ilovemydogandmrobama2 · 14/06/2021 18:55

Am so sorry - of course acne can affect your physical and mental health and it's absolutely not a cosmetic issue.

So sorry your family are not being supportive. It's really difficult especially when people suggest that diet is responsible, as if it's your fault.

It's not your fault. Flowers

Viviennemary · 14/06/2021 18:58

I agree you need to be referred to a dematologist. Can you afford private for the initial consultation.

namechange6754 · 14/06/2021 19:03

@BiggerBetterHealthier the posts encouraging the OP to ensure she sees a dermatologist is precisely because we know how overlooked acne is and how many GPs refuse to refer and treat it appropriately. "Trying everything" could well be not getting past the GP because the GP is the blocker, she gave very little detail on what everything is and so with the limited info given posters are trying their upmost to ensure the OP does not give up if she has faced a block, because we acknowledge it very much is a chronic condition that no one should have to put up with but too many feel forced to. It took me 10 years of fighting to get to a dermatologist, my acne was gone within 2 months of my first consultation.

Howshouldibehave · 14/06/2021 19:03

Yes, nothing works

What have you already tried?

Viviennemary · 14/06/2021 19:07

OpP doesn't need loads of sympathy poor you. She needs her acne to be treated and that means seeing an expert.

wanderedlonelyasacloud · 14/06/2021 19:08

Hi OP. I'm so sorry you're going through this, I've been there and it's awful. It used to affect my mental health so much that I didnt want to go out much and sometimes I wished I wasnt here at all.

The only thing that worked for me was roaccutane. I was referred to a consultant dermatologist by my GP and I cant tell you how quickly I was seen and they started my prescription the day I saw the consultant! It changed my life.

I was worried i was going to have a really long referral time so also saw a private dermatologist and they quoted me around £1200 for the full course of roaccutane including appointments and private prescriptions, but in the end the nhs referral was so quick I didnt need to go private. This was in 2019.

Please ignore any well meaning people saying have you tried this or have you tried that, people used to ask me if I'd tried xyz all the time and it was always absolute shite.

BiggerBetterHealthier · 14/06/2021 19:22

@Viviennemary

OpP doesn't need loads of sympathy poor you. She needs her acne to be treated and that means seeing an expert.
That's what you garnered from my post? Hmm

She wasn't asking for advice. She was asking to be justified in the way she was feeling.

Did you even read the title?

And to assume that she hasn't seen a skin specialist is absolutely patronising.

BiggerBetterHealthier · 14/06/2021 19:23

Please ignore any well meaning people saying have you tried this or have you tried that, people used to ask me if I'd tried xyz all the time and it was always absolute shite.

THIS is exactly what I'm taking about.

Thepollonator · 14/06/2021 19:24

@seemenowlater
Oh poor you! My son had horrendous acne and his life was so miserable, he didn't even want to go out.
Yes people have worse ailments than you but as I say 'your shit is your shit' so it's no comparison!
We took my son to a dermatologist and he was prescribed Roaccutane (Sorry about spelling). It was a horrible drug with many side effects but he persevered and came out the other side with beautiful skin and still has 22 years later. It made his face bright red like a bad sunburn and was so painful at first but you're already like that so what's another 6 months or so. The extra pain is definitely worth it in the end you just have to persevere. Get yourself to the Docs again and insist on a referral, tell them how it's affecting your life and your mental health!
I wish you all the luck in the world and a future with lovely soft skin! xxx

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