If I was you I wouldn't bother giving it another go. Even if it did have effect, it would surely not be many of them affected. It's not like you can have 100 co2 laser treatments :( .
I have some slightly bad news. I talked to a girl at one of the clear skincare clinics to talk about sebaceous gland ablation. The impression I got from her was very bad. No more trained than a laser hair removalist would be. Kept talking about irrelevant information about acne and things that would have been false in relation to fordyce spots. She would also not let me use any numbing cream, saying "it doesn't hurt". As much as I tried to explain to her that sticking a hot needle in a lip is ridiculously more painful than just in the cheek, she downplayed what I was saying. Although she said she could try a couple spots, as she refused to use numbing cream I had to say no. Believe me, the pain would be immense, and she would know that if she actually had any kind of dermatology training. There was other stuff too but I won't go on -_-.
At the very least, you can not expect any kind of out-of-the-box intelligence coming from the people at these clinics. They're probably fine for acne, but for fordyce spots the only chance you would have is the head dermatologist in Sydney I imagine. So it's not a complete dead-end, I'm sure the procedure has a high chance of working if it was intelligently done, but overall it is completely uncharted waters and these people probably can not be trusted with your lips.
So that sucks.
So it's me again. I have found the cure btw.
I have spent hours upon hours for the last 3 years of my life researching and learning as much as I can.
Just thought I would clarify to you all about the actual cure for this disease, in case anyone else wants to go on a tangent journey of disappointment.
No, it hasn't been specifically tested on lip fordyce, but there is no reason why it would not work.
The risks are very minimal, and the chance of a good result would be very high if in the right hands.
That's the biggest issue, 'the right hands'. As everyone here probably knows by now, it's not like the brightest bulbs go into dermatology. There are no right hands at the moment. So for now there is not much hope.
The acne stuff is exciting in itself, but the 3rd study about syringomas is particularly interesting. Basically syringomas are fordyce spot's cousins. Instead of the sebaceous gland being overactive, it's the sweat gland. There is also no treatment up till this point for syringomas other than, yes, you guessed it, non-fractional co2 laser. Exact same stuff. But this has been shown to work very well for this, as you can see in that 3rd study.
To save you the trouble of reading the whole study though. The way it is done is with the same machines used for professional hair removal electrolysis. Only professional though, as it uses flash thermolysis and not galvanic (which is what any of those cheap 9v battery home kits would use, and would not work for this). But some differences is it uses a sharp needle rather than blunt, and it has a coating on it that only lets the first millimeter receive the heat. This is so that the rest of the needle that is in contact with the surface doesn't get hot and scar/burn the top. This particular method is stating 1.5mm of total needle length, for fordyce spots that is probably not the most optimal length as 1.5mm pretty deep in the context of the lips. I bet you it would still work though. Pain would be very very minimal as the lips are the most receptive body part for topical anaesthetic cream. The power is only active for a quarter to half a second.
The chance of scarring is ridiculously lower than a co2 laser, and so far with the acne treatments scarring is very rare. The most common issues that can arise for this treatment with acne are icepick/hole scars and dark pigmentation. The good thing is though, the lips are mostly very resistant to icepick style scarring, and pigmentation too. Plus it's very easy to shed freckles for example from the lip mucosa, it's as simple as a bit of acid and tretinoin for a couple of weeks.
So yes. There is hope, very appropriate hope. The cure does exist, just not in the form we would like. And it's availability around the world is very limited.
If you google "AGNES acne treatment" you will be able to gather more information about this treatment. It originates from Korea though, Dr Gun Young Ahn. The only places in the world that do this right now as far as I know exist in asia. But like I mentioned with in my previous post, they would probably be very apprehensive and ignorant about using it for anything other than acne.
From a quick google search I saw the following places offering this AGNES RF acne treatment:
Korea
Singapore
Thailand
They probably won't want to help you. They may even make a mistake and harm you. Certainly not worth travelling for at this stage.
October of last year, there was some training conducted in the UK for use of this system. The medical director from leadenhall skinclinic in london used the machine in a demonstration for acne. This may indicate that it could be coming to that place in london. There were also other people from the UK attending, so it might pop up sometime this year in some UK dermatology places.
And of course there is the SGA in Australia, however as I mentioned it is a bastardised system that doesn't have as many safety procedures in place as the AGNES system. It is not worth attempting unless you can manage to not scare away the head dermatologist and get an appointment with her in the Sydney clinic and you are already located in australia.
So in closing statement, there is a glimmer of hope. But I still think we are quite far from this becoming a thing we can have complete confidence in.
I will be still researching this, perhaps in an attempt to treat myself with this method, but I honestly doubt that will actually happen. But I will continue to try and establish an avenue for us to be cured from this disease. If I do end up treating myself, or finding someone to treat me, I will document it, and write up a professional case study, which will help spur the adoption of this method.
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Ya, it's me again. 3 and a row woot.
Anyway. I have now found out this AGNES treatment is currently available in London!
Is anyone here located in London?
Epsom Skin Clinics in Surrey, London.
Luckily for you, curing and treating syringoma seems to be a standard part of the AGNES system now, so you may have a really okay chance at convincing them to give it a go on fordyce spots too!
I may try to get in contact with them and find more info.
Hi guys,
So I have begun contact with this clinic in London. ANYONE WHO CAN TRAVEL TO LONDON PLEASE READ BELOW.
I wouldn't advise people to contact the clinic themselves at this point, just to prevent scaring them off as most of the medical community isn't aware of the outcry for this skin condition. If we're calm about this we may get some progress.
So just wait a little bit longer, and I will have some more information for you.
If you are based in London, or in the UK, or are someone who visits London regularly, and are interested in talking to a dermatologist (note: I am not a dermatologist, I'm talking about the ones in london) and trying this treatment,
Based on what I receive, it will help me to convey a demand for treatment for this condition and potential patients. THIS WILL HELP A LOT. And if we do get success from this, the treatment will probably start opening up to people all around the world.
If you want to mention more, you can mention:
your first name,
gender,
approximately where abouts you live in your country,
how easy it would be for you to travel to london,
where these spots are located,
how many spots you think you have (10+, 50+, 100+ 200+?),
how big these spots are (viewable only when stretched, or always viewable, relatively large or fairly small?),
when you first noticed this condition,
what treatment options you have tried for this and their outcomes,
and whether you do have a clear photo of your condition and outcomes and progress of any treatments you have tried.
You can send photos as an attachment if you are comfortable and have them handy, but keep in mind I'm not a doctor, but I will not send these photos to anyone other than other medical professionals. For your own privacy it would probably be best to not include your face but just the lips themselves. If you are not sure how to get an accurate photo, a tip is using a logitech (or other) webcam device and setting the focus level to Macro (it may have a flower icon). Please try to not get too upset by what you see because this macro level is waaaay over the top from what regular people can see on you. The photos I have of myself are ghastly, lmao. Natural lighting is probably best as it will help bring out the white of the spots.
So to clarify, nothing has been confirmed, but they are interested in hearing more. There is solid medical science to suggest that this is a very viable and low risk cure for this disease, for the lips and the genitals. The genitals would be much trickier to treat though so it is not a target currently, you can email me about that if you wish but clearly state it is not about the lips and don't include a photo at this point :) .
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Just first name, location, how serious you are about trying, how easy it would be to get there, and maybe 1 clear photo.
I really don't want it to be a huge thing.
But without londoners who are willing to try it, we won't get anywhere.
I don't think there will be an advancement or technique that trumps this one. But we have to cautiously try it, and get some case studies. The case studies of it, with before and after pictures, will begin the movement.
You should post on the fordyce spots forum! The thread is up on the "on the lips" section.
We have a chance of really making a difference.
Could you be so kind to reference the study that you are referring to?
I am not sure about your statement about the depth of the laser that is needed to eliminate fordyce spots. My dermatologist explained to me that fordyce spots root very deep in the lip so you either get scarring or they come back depending on what approach you take. Not sure if 1.5mm will do it, but maybe ?!
However, if that non-fractional CO2 laser is a thing (I have to do more research, Google was not very helpful) maybe it is effective enough to help the visibility and minimize side effects regardless of its penetration reach.
Could you be so kind to reference the study that you are referring to?
I am not sure about your statement about the depth of the laser that is needed to eliminate fordyce spots. My dermatologist explained to me that fordyce spots root very deep in the lip so you either get scarring or they come back depending on what approach you take. Not sure if 1.5mm will do it, but maybe?!
However, if that non-fractional CO2 laser is a thing (I have to do more research, Google was not very helpful) maybe it is effective enough to help the visibility and minimize side effects regardless of its penetration reach.
Does anyone know why the fordyce spots forum site never opens anymore? Anyone else having troubling logging in to it?