“Anything I can not transform into something marvelous, I let go”
~ Anais Nin
Angiokeratoma of Fordyce is a skin condition characterized by red to blue papules on the scrotum or vulva.
It’s been over a decade since I had my diagnosis, and I’m about 99% positive this is the official name. Reconstructing it with Google photos. I had rather not looked into it at all, because there’s always something more to click on and before you know it you’re on a page with risks and warnings and things that scare the shit out of you.
But for this piece I realized I had to come up with the Latin name as well, in order to make it easier for you to see if we’re talking about the same thing.
I m not going to include photos, because it always makes me slightly sick knowing someone had to “pose” for that. But I ll give you the description.
The genital spots I m talking about look like tiny blood blisters. You can clearly see they’re not related to those bright red “freckles” you can have on other parts of your body, and that also only appear with age.
I had my first genital ones appearing when I was in my early thirties.
In the Netherlands they are treated by the GP (general practitioner, huisarts) sometimes after contacting a dermatologist about the nature of the ailment. Because although it’s extremely common, it’s something you learn on the job. I suppose.
And there’s a first time for everything.
I have the same thing with my port-wine stain, or firemark, on my leg. Although it’s standard medical knowledge a doctor may not immediately recognize it.
Which is extremely annoying by the way, if you have a birthmark every doctor needs to look up.
Especially if you’re already showing you vagina, for example to get these spots sorted out, and then they ask: “What’s that?”
That doesn’t build trust.
Sometimes I just start by saying what it (the port-wine stain) is, not to have the medical consultation start off on entirely the wrong, slightly hostile foot. But then that doesn’t work either because then I’m basically confirming to myself that I expect the doctor is unskilled and ignorant.
Suffice to say my whole history of showing my vagina to a doctor, has always gotten derailed by the port-wine stain to begin with.
Getting the dark genital spots, and the countless times they (Dutch doctors) tried to cure it could easily be added to the pile of awkward experienced already present.
Just that they were far more painful.
If you live in America, I expect you can have more trust in your doctor to use a good painkiller, and will probably be referred to the hospital/ specialist anyway. Dutch GP’s have more skills under their belt than any of their international peers.
Except maybe in developing countries.
But I don’t want to give the impression that I would have preferred it to be otherwise.
I hate hospitals and doctors, and I go really well with that entrepreneurial approach of Dutch GP’s basically trying to do everything themselves first. It’s just that in combination with Dutch pain ethics, you are completely at the mercy of them using something that bares closest resemblance to a soldering iron to burn your dark genital spots away for you. Starting off with an intensity or level, indicating they probably had ZERO knowledge of how much it would hurt.
And it was due to me insisting that they brought that level down, and reminding them every time I got a different doctor, that they had to use it at a lower level. Always leaving me thinking that apparently it wasn’t that they didn’t realize how much it would hurt, but that they didn’t saw any reason why I should not be able to take that.
That’s what I meant with Dutch pain ethics.
Anyway, when after years of going through these traumatizing treatments;
I m not going to use the word butcher. Oops.
The light painkiller (cream) failing;
which by the way was also my idea, not theirs,
And me being unable to sustain the injection of a real anesthetic, not even in combination with the cream;
Having the needle penetrate the skin was just as excruciating as having it burned away without anesthetics,
After that my doctor didn’t want to treat me anymore.
And I was done being berated on my inability to take pain and having a soldering iron used on my genitals.
So at least we were finally on the same page about it.
She said that she would refer me to a dermatologist if I ever wanted to get them removed again, and that I could also discuss there what they could offer me for anesthetics.
Clearly blaming me for being the impossible one.
One thing she did say, and for which I am grateful because otherwise I wouldn’t be able to write this piece, is that she could have used the liquid nitrogen instead. And she openly wondered why she had not thought of that before. Which again, illustrates how brazen Dutch doctors will be and that they won’t think about how to make it less painful until the point when you’ve already decided you’re going to stop.
But the good news was I didn’t need her help anymore because liquid nitrogen is also sold over the counter. It’s used to burn warts away, and it comes with an entire list of warnings including to never use it on your genitals. After having doctors attack my genitals with a soldering iron for years, I was entirely beyond the point where I was going to let someone else decide how I could treat my genitals.
Just watch me, you *insert insult*
I ll show you which one is the better doctor.
Although that’s not entirely fair, since it was a doctor who gave me the idea in the first place. But my hostility towards what they put me through, has never disappeared. Maybe because of the port-wine stain, I’ve never trusted doctors. And learned to trust myself instead.
So when her remark basically pointed me towards how I could remove the dark spots myself, I took it. And never went back.
DIY treatment of dark genital spots, using liquid nitrogen and ice
Read the instructions on the can of liquid nitrogen, which is an over-the-counter wart remover. The one that comes in a can, obviously. Ignore any warnings about using it on your genitals ;)
Shave the area if nessecary and disinfect with alcohol.
Desensitize the area with an ice cube or anything frozen. Put the cube in a plastic bag, so that you don’t get everything wet. Now treat the spots in the desensitized area, according to the instructions. I do it for as long as I can take the pain, but I think in general 5 seconds is maximum, from what I remember.
There is a high chance you will not see any immediate effect.
If you want to you can repeat the treatment, but the effect can take some time. It doesn’t show immediately, yet when you take your first shower and wash yourself, you won’t be feeling any lump shaped spots, as the spots will have disappeared on the surface. Sometimes leaving a much deeper lying, vague, spot, which doesn’t look in any way weird anymore.
The area will be sensitive for a couple of days, but contrary to when my doctor treated me, I can never see any trauma after I ve done this myself.
I’m happy I finally chose to tell my story.
For multiple reasons, but the reason I think that after twelve years of silence something good came out of it, is that I have now transformed my experience to the point where it could help others who suffer from this condition. That they can remove the spots without having to see a doctor.
Here below (after much internal debate) I ll share the embarrassing incident, one I am far from getting closure on, which sparked my decision to be open about it.
Originally I was going to write a separate post, called “Sex scandal” or something. Where I share the story below. But it’s still so raw, and I feel so horrible about it, that I can’t even begin to put it somewhere on this blog where it serves as, I don’t know, click bait?
But my shame about the story below, combined with the story above, caused such a tight ball of fear, shame, disgust and self-loathing… I simply had no idea how to begin unraveling it. Except by doing just that; unraveling it. Starting by splitting it in two.
So above is the story about the dark spots.
And below is the second part, the story of what happened this week. Which gave me so much agony and sleepless nights that the last thing I wanted to do is to look this in the eye. This fear of exposure, and losing my dignity. Until I remembered what is possibly an even more famous quote of Anais Nin;
“Life shrinks or expands in proportion to one’s courage.”
~ Anaïs Nin
My personal story
It’s been twelve years since I got my diagnosis, and I ve always been quiet about it. Due to something that happened in the past week, I feel exposed. Literally. At first I thought it was the exposure part that I was supposed to focus on. Because I believe every problem can be used as a tool to grow stronger, to acquire a certain skill.
That life throws stuff at you, not to test if you’re strong enough. But to train you to stay flexible. Life doesn’t give you the same lesson twice. Even if what you’re supposed to learn is the same, your new lesson will have a shape you’re unfamiliar with. And sometimes? Once a year, or every five years, or maybe even every ten years?
You get a big one.
And in my case that was being exposed in a similar way a leaked sex tape has harmed a female Dutch celebrity, just last year. She was having an unusual form of sex, she was older, and the whole thing leaked to the media.
She stayed indoors for weeks and still calls it the most horrifying experience of her life. The knowledge that a large number of strangers, people you ran into shopping or going out, have seen it and possibly judge you for it.
After my first sleepless night, I realized this was probably the lesson; that I had to learn to keep my head high, even when something similar happened to me. And perhaps that i was now getting the lesson, now that I wasn’t famous (yet?) so that I would feel more confident that if something similar would happen, I would be able to handle it.
That before I would feel safe being more visible in the world, as a yoga teacher as a writer, I would need to come to terms with my biggest fear of being judged for my sexuality, of being seen nude or having sex. Of people being opinionated about how I have sex, and talking behind my back, making me feeling threatened and unloved.
That this had to come first.
Now as I said above, I later realized this was only half of the lesson. The other part of the lesson was that it was time to come to terms with my genital skin condition, and to bring that story out into the light.
So I did that first.
Because that part of the story/ part of the ball of fear, was already twelve years old, and because I had been confidently treating it myself for years, that was far less difficult than I expected it to be. I even tweeted that part of the story already, in the middle of the night, just so that I had consolidated the decision to tell it.
It came out smoothly.
But this last part, the new part, the part about the exposure?
That’s new. And it’s not even “done” yet. The circumstances will not be finalized, the story will not end for another year or so. So either I m going to make myself really small, stay low, hoping it will blow over. Or I m going to face it, and claim even the worst possible outcome as my own.
And take it all back.
Leave not a shred of shame about the whole incident on the table for someone else to use against me, to tease me with. Nothing. To stop caring entirely about what someone else has seen, or hasn’t seen. Knows about me, or think they know about me.
I m suddenly reminded about teenage girls suffering online exposure as well. Sometimes even resulting in them taking their own lives. We (women) are so easily slowed down, and basically just take ourselves out of the game – literally or figuratively – the moment we feel exposed.
There is so much fear.
I really feel that if I do this, tell you this, ALL OF IT, then part of it will live on into a much larger spirit. Like a being, an imaginary (or not?) helper that will find the minds of all women experiencing such a thing.
And all girls fearing it.
That every woman going through this, either has the choice to let it throw her off balance. Or to grow past it and to become – quoting an internet meme I always liked – that woman when your feet hit the floor the devil says; “Crap. She’s up.”
So here we go.
I live in an apartment building that will undergo large renovations in the upcoming year. Which means that for a period of a month, I will have to open up my house and give construction workers of all sorts unlimited access to do whatever it is they need to do.
Now from previous experiences I know these men to be absolutely shameless in preying on you, your personal life, and to treat you without any respect and especially not the regal treatment the person basically paying their bills, should get.
Don’t get me wrong I m not talking about individual workmen, coming to my door, on my request, to take care of a single thing. I ve never experienced any trouble there. I m talking about larger projects with multiple contractors, sometimes even subcontractors, and none of them making any attempt to respect your personal space.
To have your boundaries breached for eight hours a day by multiple men invading your personal space from every possible angle.
I think it goes without saying that I already feared this, as it is.
Thankfully, it was something that was not acute. They wouldn’t start in months. Or so I thought. Because last week I masturbated and did my dark spot treatment thing with the procedure above, and had the eerie feeling I was being watched. It could have been sparked by hearing some noises that indicated someone was in front of the windows of the floor where I live, but I don’t remember.
I remember I heard those noises at least once that week.
But I forgot if it was that day.
All I remember was saying to myself I shouldn’t be so paranoid, but afterwards – and of this part I am certain – I saw a high rise wagon (like with a big folded ladder on top) parked in front of my house. There was no one there (anymore?) but it made me feel very uncomfortable.
Then I remembered I had gotten a letter of the construction company, which I had not opened because I ve been getting letters for months now, and it was never anything that applied to me having to take action.
It said they were starting with some adjustments on the roof, and were going to use the high rise, or ladder wagon as I suppose it’s called.
Ever since then I have been unable to sleep.
My bedroom, where I did the treatment and the masturbating on the bed, has curtains, but I know they’re see through when the light is on on the inside. And it’s dark on the outside. I just never bothered to change them because I don’t have anything across the street from me.
But they offer little protection (if any), if there really was someone on the outside looking in. Someone who will go tell all the other boys, who will then be even more unpleasant to be around with for four weeks straight.
And – this is also important – I ve been deprived of privacy in my house and bedroom as it is, because I have a new neighbor and he has his bedroom next to mine. I hear his bed, he hears mine. When I masturbate I’m already concerned that I, or the bed, don’t make any noise. The walls are so thin. Something the big refurbishment will not change anything about.
I have the option of moving my bedroom to my study, but I have a neighbor over there on the other side of the wall as well. The only option for me to have some kind of privacy and not have my bed to a wall with someone so nearby, is to put my bed in the living room.
Maybe I will do that.
So after already feeling terrible about being way too intimate with the neighbor, and dreading the day I have to let the main supervisor and main contractor come into my house and be nice to them, to have them plan things and everything with me – I now have Workmen Watched Me Masturbate and Treat Pussy to worry about.
To add to the list.
I considered keeping this part quiet. So that in case they did not see anything, I had not basically exposed myself. But like I said – this can all take another year. And I don’t want to wait for a year to see if my worst fears have come true yes or no. If they saw anything. And then told all their colleagues.
Like I said, it’s all extremely raw. All I know is that I feel related to how other women and girls have been exposed, and although I have not unraveled all of it, I know that at the heart of it are the remains of fear of my own sexuality. That I feel ashamed being caught. If I think about a man being caught with the curtains closed, through a normally completely private window, by a construction company who had indicated they would start working high rise in any of the upcoming weeks;
Would this man be ashamed?
Would he dread the day those people came to refurbish his house?
Of course not.
He would shrug, ignore the whole thing, and he wouldn’t go out of his way to make them coffee or otherwise accommodate them the goddamn day. And when he got home and they were still there, they would think;
“Crap. He’s here.”
An Unexamined Life is Not Worth Living
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