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Original poster

Cystic acne - seeing a dermatologist

99 replies

PookieDo · 08/05/2017 17:47

Hi anyone in my boat? I don't know what to expect. I don't want to get my hopes up that there is any 'cure'. I don't even know what they can offer me.

I did roaccutane over 10 years ago which had great results but it was only a short remission and I've struggled for the last 7 years. I have scarring all down my back/neck and all over my face. I get large painful deep cysts. Sometimes the cysts go away by themselves sometimes they kind of explode when the skin is too stretched and there is no pus, just blood and clear fluid.

It is all hormonal acne. GP has now admitted I've tried everything possible I am either resistant or it's not working because it's hormonal. I cannot take the pill because I get migraine with aura so I am contraindicated.

I've written a list of everything I've tried and will take this along with me. Any other tips?

OP posts:
Redlocks28 · 08/05/2017 17:53

You poor thing-I do sympathise.

I wouldn't say I have acne as I don't get covered but I get hormonal cystic spots. They get very large, are extremely deep and never come to a head. If they are anywhere near my mouth, for some reason, the area around the 'spot' swells up and it looks like I have been punched. They take weeks to go down and leave scars. They are quite disfiguring as they don't look anything like normal spots.

The pill helped me a lot-I did get bad migraines to be honest, but I'd rather have those than the skin I had. I've got the Mirena now (and am older) and they are few and far between which is a relief.

Good luck at the doctors.

Original poster
PookieDo · 08/05/2017 18:00

Thanks - I've got the referral to the dermatologist already so just preparing.

Sounds similar to mine, the scarring happens when the skin never gets the chance to heal, the cysts get massive and then come again and again. They are so big sometimes. I had one on my throat that was so painful!

I can't have any contraception - none of it agrees with me. I'm being sterilised and ablated soon to help with that and fibroids. My hormones are screwed! Apparently the aura before a migraine increases your risk of stroke so you can't have the pill!

OP posts:
NavyandWhite · 09/05/2017 05:57

This reply has been deleted

Message withdrawn at poster's request.

coldflange · 09/05/2017 13:46

Good luck at the dermatologist.

Would you try another course of Roaccutane?

Have you tried Spironolactone? bit of info It isn't that widely used - I take it - in my late 40s and still have mild acne/oily skin. This gives me almost perfect skin - it's worth the regular blood testing and (slight) weight gain.

Original poster
PookieDo · 09/05/2017 13:56

Hi - that's what I want the spiro. I have done a lot of research and everything points to it being what could help me. The GP can't prescribe it

I would prefer to try spiro but I would do roaccutane again - only I think some guidelines say once only in some areas of the NHS. Until I go I don't know how open they will be to me trying spiro. I also am extremely hairy and some of the acne/cysts is certainly related to blocked hair follicles. I asked for my androgens to be tested and got no where

OP posts:
Original poster
PookieDo · 09/05/2017 13:56

Who prescribed spiro to you?

OP posts:
NavyandWhite · 09/05/2017 14:02

This reply has been deleted

Message withdrawn at poster's request.

Original poster
PookieDo · 09/05/2017 14:06

My GP won't because it would be 'off label'

OP posts:
NavyandWhite · 09/05/2017 14:08

This reply has been deleted

Message withdrawn at poster's request.

Original poster
PookieDo · 09/05/2017 14:18

I think it's a heart medication so it's only licenced for that - many GP's aren't always happy to prescribe something outside the licence. But consultants may well do so.

OP posts:
NoLotteryWinYet · 09/05/2017 14:22

Anything that can be done to manage hormone levels? I had this for about 2-3 years after having my first dc and it was horrible - it went away when I stopped bf and didn't happen with the second dc.

NavyandWhite · 09/05/2017 14:23

This reply has been deleted

Message withdrawn at poster's request.

coldflange · 09/05/2017 14:23

It was a hospital dermatologist who prescribed it initially.

I go to my GP though for the blood tests and repeat prescriptions.

It is a serious drug - but is effective in the same way a Dianette and Yasmin - in that it inhibits the androgens/receptors. Anyway less male, more female.

To date the only side effect I have had is weight that I can not shift (but that could be my age now) and sore breasts at times -like PMT boobs. I've been on it for 2 years.

Original poster
PookieDo · 09/05/2017 14:27

I so want to try this!
Really have fingers crossed

OP posts:
coldflange · 09/05/2017 14:33

I will say, OP, that I had seen two dermatologists previously who had brushed me off with antibiotics and promises that "it will clear up in your forties" ?

This time I visited a private dermatologist - she suggested I see this particular NHS dermatologist as she specialised in adult acne. It was worth me paying the private consultation as I probably wouldn't have come across this NHS derm otherwise. I had to travel to see her but only went twice and then she signed me over to my GP.

I can pm you her name - she was very understanding and didn't try to fob me off. My skin wasn't that bad really, but I was just fed up of still suffering, concealing, not wearing vest tops etc due to pimples that I wanted it fixing.

Bovneydazzlers · 09/05/2017 14:38

I sympathise, it's miserable, it really affected my self confidence.
I had roaccutane at 20 which cleared mine. I was devasted when the cystic acne came back at 24. I went back on roaccutane again at 24 and that has cleared it for good. I'd try roaccutane again, at least it may give a few years respite but hopefully clear it forever :)

Blackbutler86 · 09/05/2017 14:42

Have you looked into food allergies at all? I had acne for about ten years from aged 17. I tried all sorts of products, went to skin places for facials, chemical peels etc with zero help. My face was so painful I found it hard to lay on my side at night.

Almost 3 years ago whilst looking up more acne cures online I came across how dairy can cause acne as it's filled with hormones. I decided to give it a try and low and behold within a week no more painful spots developed and my face began to clear up. I still do get a few spots usually during the week before I'm due on but other than that I have pretty clear skin now. I have a lot of scarring but with make up no one would think it. Have a look into it, it may not work for you but honestly it changed my life.

Original poster
PookieDo · 09/05/2017 14:44

Thanks please do!

I had a horrible derm back when I first saw someone, she had no bedside manner! GP's have also told me to just get over it in the past too.

Antibiotics actually did significantly clear it up at least 70%! What has swung it this time is that the antibiotics are making me ill. They have upset my stomach quite badly, I'm really struggling with loose bowels and sickness and GP told me I must have a break. Then I got upset and said I don't know what else to do.

Looking back over my record I have a solid 10+yr record of repeat prescriptions for absolutely everything on the market - gel roaccutane (isotretoin and adalapene - 2 different brands), 5 long (6 month) courses of antibiotics, duac cream, BP cream, acnecide... there isn't anything left to try. The creams have sometimes made things worse with peeling, scarring and damage as they are caustic. I had melasma quite badly on my upper lip because I cannot go near sunlight at all now!

OP posts:
Blackbutler86 · 09/05/2017 14:44

Meant to say I decided to give cutting out dairy from my diet a try*

Original poster
PookieDo · 09/05/2017 14:46

Yes I have stopped dairy and it does help. But I have found it so difficult to eliminate from my diet entirely and it makes me quite stressed! Also so conflicting whether goats or sheeps milk is ok, whether it is just non organic milk that makes it worse (as the cows have added oestrogen). Also GP not happy about it because of potential calcium deficiency risks! Almond and soya milk and products are quite disgusting!

OP posts:
coldflange · 09/05/2017 14:54

Have messaged you OP.

I have heard the one about milk too - there is truth to it and cutting out dairy does work for some people. It would be fine for me as i hate milk/cream but I would stuggle when it comes to cheese.

Blackbutler86 · 09/05/2017 15:10

I think I was quite lucky in that I like dairy alternatives, most are fortified with calcium so there is no danger of deficiency if using them. Oat milk is one of my favourites. Also calcium is in other things like kale, broccoli, spinach, swede, actual almonds and many other things.

I did miss cheese to start with and was shocked at how many things contain dairy that I wouldn't have thought did, even my hay fever medicine had lactose in so now I use a children's liquid. I do wish you the best of luck though OP and hope you can get it sorted, I felt so depressed when my skin was at its worst.

Original poster
PookieDo · 09/05/2017 15:18

I eat a lot of green vegetables. I try to only eat feta or buffalo mozzarella and if really struggling, organic cows milk products only in teeny quantities. I've tried coconut cheese (awful!) and dislike all soya yoghurts. So I've given up even attempting trying any kind of yoghurts and avoid milk where possible. I try not to eat bread at all and switching to 'free from' pasta. But I'm sure milk is in a hundred other things I don't always check!

OP posts:
AttilaTheMeerkat · 09/05/2017 15:39

Pookie

I am wondering if polycystic ovarian syndrome (PCOS) is actually the root cause of your cystic acne. The fact that you mention hirsuitism also made me think of this.

You stated that you got nowhere with regards to testing for androgens; why was that?.

grannytomine · 09/05/2017 15:50

I think it is worth trying roaccutane again, one of my kids had bad acne, topical antibiotics, then oral antibiotics, then oral antibiotics with topical antibiotics and then roaccutane. Great all cleared but came back, he was upset at starting it again but the second course did the trick and 8 years later he is still clear.

Good luck.