AIBU... to cry about my skin?

[minipilling]

I have had acne my whole teen/adult life. Throughout my twenties I had it pretty badly on my face, chest and back. I couldn't wear anything that wasn't high necked.

I was diagnosed with endometriosis a few years ago and put on a low dose combined pill for treatment. It was great for me symptoms wise, but an amazing side effect was also the fact it cleared my acne after a month or so. I had spent years using topical treatments to no avail, and suddenly it was fixed. Not perfect, but the best it had ever been. My confidence skyrocketed, it changed my life.

Fast forward to a few months ago, I was getting migraines with aura, and I was taken off my pill. I had a break for a while and my spots started to return almost immediately. Plus my endometriosis symptoms were worse again. The doctor put me on the mini pill. This has been OK for the endometriosis (up and down) but my acne has increased hugely and is worse than it ever was. I hoped it would settle but it's been over three months. It's all over my face, neck, chest and back, causing scars, deep and cystic. The skin is rough and uneven. I feel like I'm in a nightmare whenever I look into the mirror. Pictures I took during my clear skin phase make me want to be sick, if would give anything to go back on my old pill but I know I can't. I don't know what to do.

I have been trying everything, salicylic acid, benzoyl peroxide, tea tree, charcoal. I am terrified I will look like this forever. I know it sounds vain but I have depression and anxiety and the acne makes everything feel so much worse. I have to keep taking the mini pill because my endometriosis is awful if I don't take anything. I am in my mid thirties and I feel so ugly and worthless. When the acne first came back I told my consultant because I wanted to be sure I could not go back on the old pill. He said my health was worth 'a few spots.' It made me so angry, I would kill to only have 'a few spots.'

I don't know if anyone has been in a similar situation or can give advice on what to do... I just feel so wretched now, I have a painful condition and I look a mess.

Thank you for reading if you got this far.

@minipilling

Hi everyone, thank you for so many suggestions and bits of advice, I will be noting these down. I am glad for the positive reviews of Roaccutane too. I will definitely consider it. *@DevastatedandDistraught* I am very sorry for your tragic loss and I will keep this side effect in mind if I choose to try the drug. I hope you have plenty of support through this time and you have my best wishes.

Responses to some points:

-I have had two excision surgeries in the past three years for endometriosis by a specialist, unfortunately this has never helped much with my ongoing symptoms which occur throughout the month. So I am on the mini pill for this reason as it stops my periods and makes me feel much more comfortable.

-I don't eat dairy as I quit it some years ago, thought it would help the acne but didn't! I have tried gluten free before which wasn't great for me and again, no effect on the acne. I eat very little meat and sugar and drink only tea and water. No alcohol, don't smoke etc.

-I have not tried antibiotics yet, I am a bit reluctant as I am worried about resistance and I am already allergic to a certain type. I can take penicillin and derivatives, but just concerned in case I develop resistance.

-I change pillow cases every day and use up to four clean face flannels a day to remove cleanser and dry (I have a stash of about fifty!)

-My head is shaved so I don't have a fringe or any hair in my face and I very rarely need to use conditioner!

-I cannot take Dianette or any other combined pill due to stroke risk.

I am going to look at the drug options as soon as I can.

Have read the whole thread (fellow bad skin sufferer) but wanted to pick up on this point you made about the antibiotics. It's not YOU who develops the resistance - it's the bacteria. Antibiotics are fine to be used as long as you take them as prescribed I.e. the correct dose at the correct intervals for the correct duration. This means that all of the susceptible bacteria will be killed, so they can't multiply and cause further infection. If the BACTERIA become resistant (usually as a result of failing to take antibiotics as prescribed) then they are capable of reproducing and causing an infection. If this is the case, then all of the resulting bacteria will be resistant to that particular type of antibiotic and a different type of antibiotic will need to be used to treat that infection.

@2155User I spoke to two GPs initially and my gynae surgeon/endo specialist who in particular was adamant he wouldn't put me back on a combined contraceptive. Since then have mentioned it to another GP who agreed about the contraindication.

@sanityisamyth thank you for the clarification, I understand now!

[quote minipilling]@sanityisamyth thank you for the clarification, I understand now![/quote]
You're welcome 😀

I went on roaccutane in my early twenties. I had been speaking to my GP for years about my acne and they never offered me a referral just kept prescribing me useless antibiotic treatments and topical treatments.
Finally demanded a referral and was referred to a dermatologist who started me off at square one and put me on the same topical treatments and antibiotics I had been taking for years. I cried in his office as I had wanted roaccutane.
Finally after six months I was prescribed roaccutane and then over the course of six months my skin finally improved.
I hope you get your referral to a dermatologist. I understand how acne can destroy your confidence and make you feel like life is on hold.

SewingKit,
I’m 48 now but I also had terrible acne but just on my chin , I was on all the antibiotics and lotions that a GP could prescribe including the pill but they didn’t work.
Eventually I went to a private dermatologist and asked to be put on roaccutane .
It was amazing,and I saw results after a couple of weeks .

I’d go private if you can. I had horrendous eczema which badly affected my mental health and my GP just shrugged it off so paid to go private and it started to clear within 2 days due to the doctor being willing to prescribe a much stronger steroid than an NHS doctor ever doing. Best thing I ever did.

Like others have said, I would go private.

My local GP refused Dianette and other medication, private GP more than happily prescribed. Turns out it’s an expensive drug so general GPs are warned against prescribing.
Private will give you access to more medicines and treatment

I had awful angry skin - in high school somebody described me as the girl with big spots. I took antibiotics for years - stayed effective for me but I eventually began to have side effects after nearly a decade of taking them. Leaving that aside, I can say that no topical treatment or restrictive diet made any significant difference to my skin and I tried them all. Roacutane was like a miracle to me because it worked. It's true that I had very dry skin for a bit but at last I could go out of the house without having to apply an extra layer of concealer. My sons - yes I passed it on to them - both took it with great results too.

Another Roacutane fan here! I did a course around 4 years ago and whilst the side effects are pretty bad (extremely dry, sensitive skin and lips), it is definitely worth it. I would recommend going to a private dermatologist though if you can afford it, as NHS GPs are a lot more reluctant to refer you/give it out and it will take months before you see an NHS consultant.

In my experience the mini pill also took longer than 3 months to settle (I also can’t go on the normal pill due to migraines), so I would give it a few more weeks to even itself out. You might find your skin naturally gets a bit better when it does.

I don't have much advice but skincare wise, have a look at face theory. Their range of products really helped clear my skin.

Sorry to skip to the end - I cured my acne for ever with panoxl which I believe you can no longer get, but you can get similar (benzac). Cleansed, slathered on applied panoxl 5% every morning and evening until I woke up one morning with a hugely swollen red face and had to stay off work. For 2 days! Stopped, waited a few days and started again but my face felt different. Not as spotty even though you couldn't tell.

Repeated, red swollen face, day off work, and after that I only had to use it on and off and eventually off.

I haven't had more than the very odd spot for over 10 years. Nothing else came close to working.

It felt like a real scorched earth approach and it probably was. It probably killed every nasty bug on my face and they never recovered. I could feel my face getting sensitive but I ignored that and I'm so glad I did.

It was an acne.org protocol I adapted and I definitely went over the top. Cleansed with a mild cleanser and put the stuff literally all over my face (don't forget eyebrows though it probably does lighten them a lot of shit lives there) every morning and night.

After my face was all red I just knew I'd made a major shift. I've tried other benzoyl peroxide's and they were rubbish. The ones here are pathetic.

I bought benzac on eBay which came from Thailand and was ok as a maintenance. It was a gel NOT a cream. Forget anything in the aisles at boots etc.

Google panoxyl and you'll see - it was cult and now there's only a stupid wash which is a waste of time. The ONE thing that worked and they had to discontinue it.

I'd tried accutane (effects didn't last), antibiotics (poison plus worse long term) and every wash and cream known to man. Plus blue light. Retinol, AHAs, BHAs (salycilic acid), masks etc. This was an actual cure not just a way to make it better for a few weeks.

I had acne my whole adult life until early 30s. The only thing that helped me was DIM (Diindolylmethane) which helps your liver process oestrogen more efficiently. Been taking it for about several years and no acne since.
I still have the scars though.

Oh and I also did IPL. Peels. Etc. It was the aqua gel and it might be available in other countries under other names.

I was going to say go on roaccutane. It is super strong so quite a few side effects but it worked for me in my early twenties. That said now I am in mid thirties my acne is back but not to the same degree. Good luck and keep pushing with the doctors.

You can take Roaccutane twice or even three times. Any process that interferes with a natural process like sebum production is going to be a strong med because your fighting nature.

My derm said if mine comes back to ask for a ref back to them straight away as the normal treatments didn’t work first time she doesn’t hold with trying them all again and my skin does love to get post inflammatory hyperpigmentation scarring so I scar easily.

Roaccutane does work on hormonal acne, I did a course and my skin is pretty good 10 years later - still get the occasional superficial spot but not the deep cystic ones.

Try black soap - it cleared my daughters acne after years of it, also cleared my jawline of hormonal spots - you can get it on amazon, it’s the only thing that worked for my teen, and it was really bad. It’s called dodo osun.

Roaccutane worked for me for cystic acne in my mid-30s (after I'd come off the pill).

One course and it never returned (30 years ago now).

OP, over the counter buys plus a lot of those special cleansing regimes just do not work.

You HAVE to see a good dermatologist and you need to spell out that it is causing you terrible upset.

Your consultant is a disgrace to dismiss your skin condition.

You need to insist and demand a referral.

You poor woman.

Acne is a terrible blight on a person's life.

@ferretface that’s interesting. My dermatologist wouldn’t prescribe Roaccutane as he said my acne is hormonal (which it is) and so it would just come back - hence the spironolactone.

I also had problems with thinning hair - which again the medication has sorted out.

@JaJaDingDong because I'm a wimp. I read the side effects list and also read some reviews. Someone lost their sight, some lost fertility and someone died from it. It's a very strong drug. Even the smaller symptoms like dry eyes put me off. But like I said mine cleared through pregnancy and I never had acne growing up. I got it as an adult out of nowhere and nothing helped. It cleared after my first child and hasn't returned. If it hadn't cleared I do think I might be tempted to take it.

For those who got it easily I'm surprised. My doctor made it such a long process and he also put me off it. He said it's very dangerous and was banned at one point for a reason. He kept trying to get me to take other drugs or options. That sort of gave me warning bells and I backed out.

God after all that essay, I can say friends have taken it with nothing too dangerous. (One lost most her hair though and it never came back 0.0. Again that put me off).

Topical treatments won't touch cystic acne, it sounds like roaccutane is your best bet.

Oh I lost some hair on roaccutane but it all came back.

If a drugs that dangerous it’s not on the market. I’d have taken capsules of powdered dog shit by the time I saw dermatology.

My face was literally on fire. Roaccutane was like having the heat turned down within days and I’m happy to take it again if I need to.

I’ve seen patients put off antifungal drugs by Gp’s with tales of immediate liver failure. Then grudgingly prescribed but no monthly liver function test. Actions speak louder than words. I’ve also seen patients who are retired Drs given antifungals readily.

I do wonder if any of these dr’s have had cystic acne and know just how painful it is and how much it affects your life. It is not for a dr to decide they know better than a specialist either. If they know so much why haven’t they trained to consultant level themselves.

The smart derms use Roaccutane in a much lower dose - it's a longer term thing but without the side effects. It's a newish protocol and if it wasn't such a risky drug I'd do it again just for the lovely clean hair that never got greasy, and immaculate skin.

Sadly I also had incredibly dry lips and eyes - but I was on the normal dose, in the 90s.

I don't think it was ever quite as bad again after but it most certainly didn't cure it. I went on to have spots on and off (well on mostly) until I did the panoxyl thing. I haven't had one for years now.

If you have no history of depression and are fit and healthy I'd say find a good dermatologist and give it a go. It's a good idea to take oils (epo or whatever) at the same time - they will advise you.