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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:
Patapouf · 14/06/2021 06:08

Have you sought medical intervention? Topical creams? Dietary investigations? Roaccutane?

seemenowlater · 14/06/2021 06:13

@Patapouf Yes, nothing works. Or it works for a while and then it comes back. I've had doctor's that don't give a shit and give the impression that they think I'm just taking up an appointment that somebody who is actually ill needs.

OP posts:
Zari29 · 14/06/2021 06:14

Why have you never been to a dermatologist? Sounds like you need roaccutane or something. I've had severe acne myself and went on roaccutane. I'm surprised that you say it's that bad but are trying endless products which are clearly not working when you probably need medication. Sorry I know how it feels. Nothing is going to help, you need to see a Dermatologist.

PragmaticWench · 14/06/2021 06:19

Have you been referred to a dermatologist? There are NICE guidelines for this.

Helloumi · 14/06/2021 06:20

I had horrific cystic acne. I saw a dermatologist and was diagnosed with Coeliac Disease. I've been on a gluten free diet ever since and now my skin is clear. It's worth checking out dietary needs and allergies as they fuel and feed the skin. Your post made me quite emotional I hope you get some answers and relief very soon. Thanks

RedMarauder · 14/06/2021 06:23

OP you need to ask your GP to refer you to a dermatologist.

When you are making the request point out you have had the problem for years and nothing they have prescribed for you has worked.

If you can remember any of the medications make a written list before you speak to the GP and start listing them to stop the GP prescribing you any of the same things again to delay a referral.

Also state clearly to the GP that your face is bleeding and hurts, and people have told you to your face that you don't wash.

The GP is probably looking at you like you are wasting their time because they don't know what to prescribe or do next.

doritodiva · 14/06/2021 06:24

Your gp sounds awful. I went about my acne, doesn't sound anywhere near as bad as yours and I apologised for being there. He said please don't say sorry. He said it can have just as much effect on you as other health conditions and was really lovely about it all. You do need to see a dermatologist though. Good luck. It sounds really awful for you.

UntilYourNextHairBrainedScheme · 14/06/2021 06:30

Poor you! You definitely need a specialist referral. A skin condition which causes pain and mental health problems can be a chronic illness of course, and it's unfair and shit that you have to fight to be taken seriously, but a decent dermatologist could certainly massively improve your condition as others say, so it is worth fighting for referral, even if it means insisting on seeing a different GP at your practice, complaining tothe practice manager if fobbed off, researching NICE guidelines, involving PALS, looking up charitable support groups etc.
Flowers

partyatthepalace · 14/06/2021 06:34

OP this is awful, but you must see/get a phone appointment with your GP and get a dermatology referral.

A Derm consultation will cost a few hundred quid, so if anyone in the family could help you with the cost of that, it’s worth asking as waiting times on the NHS can be long.

partyatthepalace · 14/06/2021 06:38

Also - you should absolutely get a mask exemption lanyard. So get on with that too.

Don’t take no for an answer from your GP are referral. Any probs post here again.

Mincepiesallyearround · 14/06/2021 06:40

OP this sounds awful. Have you ever had a course of roaccutane?

Arrowheart · 14/06/2021 06:42

Demand a referral to a dermatologist. If one GP doesn't offer it, ask another and keep going. This is making your life a misery and holding you back from life. Please please please be forthright and tell a dermatologist all of this. I'm sure this can be helped. Please keep us updated too. Good luck !

HowToMurderYourLife · 14/06/2021 06:47

I agree you definitely need to see a dermatologist. Write all of this down for the Dr. Include photos of the acne on your body if you don’t want to show it in the surgery. Detail the effect on your mental health including comments that you get. If the Dr isn’t helpful I would both see another and complain!

What are you using at the moment? You say you are washing a lot so stop! You are not dirty but you have irritated and inflamed skin. Just use a very gentle hypoallergenic cleanser and moisturiser twice a day. Don’t scrub your skin and use lukewarm water only and very gently pat with the face cloth and then towel to dry. Cerave has a good non irritating foaming cleanser and I like the La Roche Posay sensitive fluid to moisturise.

Don’t use any masks, exfoliant, acids or spot treatments unless advised by a derm. Your skin is deeply irritated and inflamed and anti bacterial products can be making it worse, from your description they are definitely not making it any better! It sounds like only prescription products will help the acne but you can start to soothe the irritation and calm down the inflammation and cracking.

Really feel for you and you deserve professional help and support Flowers.

readingismycardio · 14/06/2021 06:52

I'd cut off any products that you're using and start over with a gentle cleanser (such as cerave foaming cleanser), a good moisturiser and daily spf.

Push to be seen by a derm. You are more than right to feel the way you do, it's heartbreaking.

I hope all this works out for you eventually

Libraryghost · 14/06/2021 06:54

Roaccutane! Nothing else works for cystic acne, everything else you are using will just be irritating it further. Ask for a referral to a dermatologist and tell the GP how it is affecting you mentally.

groovergirl · 14/06/2021 06:57

OP, this sounds terrible, and I am so sorry you are being fobbed off by all and sundry, including your stupid GP, who should know better. Make your GP refer you to a dermatologist -- one who specialises in acne, as some are more focused on skin cancer or cosmetic procedures.
I feel your pain; I had acne for about 20 years, and tho mine was superficial and diet-related it could really sting. I know all about the styes too. Yow!

@Helloumi This is fascinating. Gluten seems to be at the bottom of so many bodily problems. I found out I was coeliac three years ago, went cold turkey and within two weeks all joint pain and depressed moods were gone! Glad it helped your complexion.

risefromyourgrave · 14/06/2021 06:59

If you haven’t tried roaccutane then you really need to get a dermatologist to prescribe you it. My DS had very painful spots all over his face and neck, 6 months of roaccutane cleared it right up and now he has gorgeous skin.

baldafrique · 14/06/2021 07:01

Roaccutane, 100%. You may need a few courses. You may need a low dose maintenance regime of it afterwards to hold a recurrence at bay. There are options with it. Get a referral to a dermatologist. Or a private one if you can afford.

Medievalist · 14/06/2021 07:03

My goodness how I sympathise.

Go back to your GP and ask for a referral to a skin specialist. Don't talk to them about how awful it looks. Talk to them about the pain it causes and the severe impact it's having on your mental health.

I went through my 20s feeling exactly like you. The first thing I did on walking was gently start moving and touching face with total trepidation to see where it hurt and therefore what new horrors had developed overnight. I'd spend an hour putting makeup on in a totally futile attempt to disguise things. I'd take days off work and avoid social events when it was really bad. And felt suicidal at times.

I moved around a lot in my 20s so saw lots of GPs who kept prescribing antibiotics with limited impact. I spent a small fortune seeing a homeopath with no real benefit. I think my mistake was that I kept talking to doctors about how awful it looked when really I should have stressed the severe impact it was having on my mental health. It's easy for them to dismiss a complaint presented as a cosmetic issue, but harder if it's a mental health issue. One dr finally got it and referred me to a specialist who gave me Roaccutane. Which quite frankly changed my life.

I hope you can get to see someone who understands and can help you op Thanks

User1110 · 14/06/2021 07:13

Oh OP :( I’m so sorry to hear this. I used to have terrible cystic acne that would swell my face up. It was so painful. I had to have time off school and work for it sometimes, and even one cyst surgically removed as it was so deep rooted and persistent.

Please go back to your GP, get referred to a derm and try roacutane again. It is amazing stuff- you may need a few courses perhaps?

I’m so sorry this is happening to you Flowers

bingowingsmcgee · 14/06/2021 07:25

I'm sorry if you've already tried it, but the contraceptive pill 'yasmin' was what cleared up my daughter's cystic acne. Definitely get a dermatology referral, you shouldn't have to live like this!

Flyonawalk · 14/06/2021 07:28

Your post is heartbreaking.

A friend suffered badly (but not as badly as you). Someone recommended Green People cleanser (very mild indeed) and she also did an exclusion diet. Started eating only a very few bland foods and introduced others gradually.

I don’t know if she found the cause of her acne but only eating a few things did help enormously, so I guess a lot of it was dietary.

I wish you luck and strength Flowers

WettyHainthrop · 14/06/2021 07:35

You need to get to a consultant dermatologist. And if you can run to it, go private to get seen quicker.

Myglassishalfempty · 14/06/2021 07:35

The way you are describing your condition I would think you need accutane. Also the combined pill yasmin is prescribed to help acne if you can take it but definitely ask for a referral to a derm. Accutane will change your life, it certainly did mine.

Cheeserton · 14/06/2021 07:36

Honestly, you could print your post from here and show it to the doctor. You must get referred and get medication. So sorry it's not been dealt with properly, that's just awful.