Sex work with a brain AVM

General Financial & Legal
1

So yeah, sorry if this post is against the page’s rules, mods are all free to erase it if they feel it’s not appropiate for this forum. I just need to ask and vent a bit. Also try to be open minded while reading

I’m 21 with a large brain AVM in the left side of my brain. Despite the general info you can get online, it seems sex is a high risk for us people with AVMs, by reading different posts. But here’s the issue… I’m an escort, and an adult content creator.

As a person who can’t get a job due to different mental health issues, sex work has been a relief for me. An amazing way to make money, pay for my meds, and take my own job into my hands. And most of all… I LOVE IT! Sex is just so amazing. Sharing both my body and the act of love with others… is pure life.

But now it seems it’ bad for me. And I just don’t know how to take it. When talking about sex in this forums or with doctors everyonne says it’s ok but oc, they are thinking about it in a casual way, between too people. They are not thinking on having sex with 6 people the night for income, or spending entire hours making content while being aroused, or making love with friends for several hours just to get some nice new content. Oc the point of all this is not my pleasure, or orgasm. It’s all acted(mostly considering it’s almost impossible to get an orgasm as an escort if u know what I’m saying lmao).

Oc I’ve talked about this with my neuro, and he says it’s fine(both sex and sex work), but what would you recomend? I’m trying to improve every other aspect of my life in terms of health and AVM harm reduction so I can continue with this without that much of a risk but still. Also considering how much I enjoy it and how it makes me focus on something it helps me a lot with stress. But it’s sad to see how something I enjoy so much and everyone else can do just like nothing is now becoming a treat to my life…

And I’m not the only one. What with the people that use sex as a living? Or the people who like being promiscuous? Or the people who like rough things like bdsm? Or the people who have multiple partners and have sex with all of them? Are all of us slowly killing us?

Sex is my life. I wouldn’t like to let it go just because of this. I had to let go many other things I love just because of my diagnosis. This last is the only thing that is allowing me to live a normal life. Any people here can relate?

2

Hi. I’ve deleted your other topic because I’m sure we don’t need two topics on a similar subject. We do have community guidelines that set out our aim that people from the age of about 12 should be able to access information on this site without it being inappropriate. However, this is a worthwhile subject, so unless it goes off the rails, I think there is value in talking about it a little.

I guess even if you’re depending on this as income, it is something that you should seriously consider whether it is sensible to carry on for the meanwhile. None of us here are doctors, so it is certainly not for me to say one way or the other as to how safe it is to engage in sexual activity: it does need to be your doctor who advises you.

I approach all of this as a risk: every element of life poses a risk, to be honest, it doesn’t matter whether you’re using the stairs at home or crossing the street, there are dangerous risks to consider. In regard to descending the stairs, it is wise to carry stuff only in one hand and to hold the handrail with the other. In regard to crossing the street, we use crossing points or open areas of road and keep looking both ways as we cross. With your question about sex, I read the same things on the internet and in the advice people have received on here, which is that since sexual arousal increases blood pressure there has to be an increased risk of a rupture with someone who has an untreated AVM. With most risks in society, we scale the mitigation according to the risk: we could set all speed limits on roads to be a maximum 15mph and reduce the risk of killing someone to near zero. But we don’t do that. We set a slow limit for built up areas and gradually increase the limit where the visibility is better, where the road is maintained to a high standard and where there are fewer pedestrians or animals.

So in a similar way, most of us might look upon the risk associated with high blood pressure and sex and say to ourselves “go easy”, or reduce how often we take the risk or for how long, etc. Sex is naturally a very tempting thing: if it wasn’t, animal life probably wouldn’t exist! So I think for most people, we would look at the risk and mitigate it in whichever way suits us best.

Since we haven’t chatted very much, I don’t understand whether your AVM is treatable or not, whether you’re waiting for treatment or have had treatment already. I think the guidance changes post op and life can return towards normal. I tend to think that it is untreated AVMs that the advice we’ve heard applies most to. Once the stroke risk has been reduced back to normal levels, we can resume the kind of things that anyone does.

So my question back is, is this a restriction that you should think about while you’re waiting for treatment or are you unfortunate enough that treatment (and I mean surgery, embolization or radiotherapy) isn’t an option for you?

These are my thoughts.

Richard

5 Likes
3

If it is a restriction I should think about? Sex work is one of the things that gives me a reason to wake up in the mornings. Even after being diagnosed, but after reading this sub… I haven’t been able to get up from bed. There is no point, and it’s been so many times like this this year. I just hate how this avm slowly takes away everything that used to make me happy and futhfilled.

And treatment, shure, I can treat it. The problem is that I live in a country with public healthcare. It means the surgeries are free, but I can’t just get an appointment when I need and it could be years from surgery to surgery. And it seems I will need several. I really don’t know about this as I still need to wait till november to ask(diagnosis was done december 13, first appointment wit neuro was done till february 27)

What I mean is… I need money. I can’t get a job, my body was my way of assuring myself a future, even for paying for treatment earlier, I can’t just stop doing it but oc that means I need to have crazy high amounts of sex. What am I gonna do now?

And I don’t get it, isn’t sex suppose to relax your body and help you lower stress and bp? Idk how a quick orgasm is that bad

How are embos supposed to be also? Do they need to be done after one another(as I’ve read) or you can go years between them?

4

So, if you didn’t have to wait so long for surgery or embolization, then it would be easy, wouldn’t it? As you describe how long treatment might take, it’s obviously much more difficult. Everything is a risk, everything about life is a risk. The only thing to choose is which risks you’re ok with and which ones you’ll rue.

For example, when I was young, I wasn’t confident on the beach: I’m not someone who is so white as to look blue but I’m pretty darned pale. So when sunbeds became widely available (in fact, they had them in the local gym that I used) I started using the sunbeds in the run up to my summer holidays. As I’m now older, I’m aware that I took a risk then that might turn into trouble for me now or in a few years. But I knew there were risks associated with it and I decided that was ok. It helped me be confident and I had some fantastic holidays. There’s a constructive element to those holidays that has shaped me into the person I am today. There’s no way that, even if it turns sour in my older age, that I’m going to rue those decisions as a young man.

Now, having a bleed is big business. I expect that most of the people here who’ve had a bleed would say to us “You don’t want a bleed, trust me, you don’t.” And if you have a bleed, it’s real Russian roulette stuff: you could get away with it but it could kill you or leave you in a very difficult condition.

But it’s your life. You’re the person who has to justify your decisions to yourself. To be too short-termist about it would be foolhardy but you do have to live the life you want to live: there’s not a lot of point otherwise. Somewhere lies the right balance. If the neurosurgeon is pretty cool about it, then that’s good (but it is your risk not theirs).

That was thought stream no 2! I hope that maybe one thing I say might help.

Best wishes,

Richard

5

Hmm I know. And is hard to choose as is how I’m paying for extra meds and opinions. I guess I’ll just stick with it till I can get the money I need and a serious talk with my neuros.

Now there’s something I quit don’t understand when it comes to sex. As different sources point, having sex is as straining as taking a walk or running up some stairs. Those are basically daily things we do all the time. Then why is sex considered so highly risky compared to those two? By the same logic we should be advice not climbing too much stairs or avoid walking to your nearby store. We need to walk, exercise, have pshysical activity in order to be healthy. As taking a run, sex itself has a lot of benefits and it’s even good for blood pressure as it relaxes your body, relieves stress and help you control your blood flow. Isn’t that worth the minute and a half peak in bp of an orgasm? An avm can’t be THAT delicate

6

I don’t know about anyone else but I don’t know enough to be able to answer one way or the other. What I’ve seen people say in here is that their doctor has euphemistically said “Go easy in the bedroom” rather than quit.

The other thing I’ve observed here is that there’s a decent quota of people who’ve had a bleed in the gym: pushing weights. There’s definitely “strain” associated with lifting [big] weights so maybe it’s all about scale, about what you’re doing / how you’re doing it. This is a subject that nobody talks about, so it’s difficult to know what’s usual, to be expected and what’s “overdoing it”. You already described this difference in what most people get up to v the length of time you’re spending aroused. This is the question, really, I guess.

In the conversation with your doctor, have they understood the extent to which you’re engaging in sex when they’ve suggested it shouldn’t be a risk?

I’m hoping one or two other people dare to answer you, too, as to what advice they’ve been given. I’m expecting this is a subject that many people will shy away from and some people will judge us for talking about!

1 Like
7

Definitely a “different” type of topic compared to most on here

But, the way I would look at it is since “sex” is the topic. I would guess it’s the higher strain, raised heart rate, blood pressure, etc.

The work part - I don’t judge, that’s up to you and anyone else on what they do

“If” and when the AVM is removed, occluded or resolved - I would “guess” it’s not an issue

This somewhat goes along the lines of my intense workouts, sex, etc.

That’s the main issue I would see - the higher strains, BP increase, etc. will add blood flow through the AVM & possibly cause a rupture - like I had, which was caused by the 1st time I went into a sauna.

Is your AVM causing issues yet that are noticeable? Blurred vision, pain, pulsatile tinnitus, etc.?

2 Likes
8

hmm, when talking about my AVM doctor never told me “go easy”. He just said there is no risk at all. Idk if it is because of my results of how my avm is.

Also, got a bp meter some time ago and my bp is always low. Even aroused or after orgasm it never gets to 120, and it’s usually around 100. Idk if that also helps. I’ve done quit a lot of sexual activity after my diagnosis and never had problems, so idk what to say. Maybe I’m not affected or maybe I’m slowly killinh myself. Gonna bring back the topic to a neuro asap or get a new opinion

2 Likes
9

Well, that sounds encouraging. All of the risk is around the circumstances with your AVM, so the only thing we can do is share our own experience (what we’ve been advised).

As for myself, I never asked the question but I’d read the “go easy” advice others had had on here and my AVM used to make me dizzy as it was pumping blood into veins that pass by your ears or maybe because it was influencing my straight sinus. As such, I had a palpable feedback mechanism. I’m pretty sure for myself that my blood pressure does go up / I felt worse (more dizzy) during sex but I also had only to be patient for a few months so I’m sure I simply abstained. This was eight years ago and I’m much less focussed on this sort of thing than you(!!) so difficult to remember but I’m sure I’m being accurate. My AVM used to make me more dizzy when I simply laid down in bed because the blood pressure increased when I was not upright. This is how obvious my blood pressure got to be for me. My AVM was called a dural arteriovenous fistula and it seemed to me as though it was changing quite rapidly. I do tend to think most people don’t have something that changes as rapidly as mine and most people don’t have the feedback I had: I could hear the whoosh, whoosh of the erroneous blood flow going past my ears, every second of the day and there was a patch on the outside of the back of my head where the veins would inflate once a second – to the extent that it would lift your fingers if you lay fingers over them. Most people don’t seem to have these feedback loops: discovering a brain AVM before rupture is more usually through a scan or possibly migraines or other more subtle effects.

So for me, it felt like a danger that could be avoided until such point as I’d had my embolization. I was advised to avoid alcohol, coffee/caffeine, straining of any kind at one point.

Anyway, we are all here to offer this kind of support: our own experience and how we got through it with a view to fellowship and hopefully making getting through these things easier for others.

Best wishes,

Richard

10

@qqquinn
Hello
I had sex before my bleed so the avm did not rupture solely because of sexual activity.
Some people post bleed have less sex drive as their body is working overtime to do things like wak and talk. Maybe you should just do the sex when it suits you.
If you bleed your life will change, that’s just the avm being a continual problem.
If you don’t bleed your life will still be ruled by your avm.
Either way you could end up with numerous symptoms.

Tim

2 Likes
12

Hi qqquinn,

Sorry about your diagnosis.

My tuppence worth is that I’ve seen no evidence that sex is a risk factor for AVM bleeds. In fact, my AVM was large, with large venous aneurysms and had ruptured previously yet various neurosurgeons I have seen have advised that I can continue my usual activities and none have cautioned me about sex. I did take things easy after my bleed, which btw happened while I was running. So about that, I was having a stressful time at work, and on the day itself I was very dehydrated, did not know that I had an AVM and was pushing myself hard running up a steep hill…and it happened. It was a recipe for a bleed in hindsight, but I also have to consider that in the five years prior to that bleed I ran two marathons, had plenty of sex, and did lots of sport with zero problems.
One of my neurosurgeons explained that arterial aneurysms commonly bleed due to stresses such as intense exercise (and I assume therefore sex too) but that they know very little about why AVMs bleed when they do. He said as an example that he’d never had an aneurysm patient bleed while asleep, whereas he has had AVM patients bleed while literally lying on a sofa. So his advice was that there was no evidence against sport, sex or anything else in particular (actually I think he said don’t do any deep diving!).
As for your totally understandable anxiety, many people with AVMs can live a normal life and enjoy a good quality of life. You make good points about general stress levels and benefits of sex etc. My own experience was that while I continued running, having sex etc, maintained low resting blood pressure, but I did adjust my LIFESTYLE to minimise stress. Worked less, relaxed more.
As Richard says we’re not doctors, but what many doctors have told me is to live my life and enjoy it, and don’t smoke (I didn’t anyway). There is plenty of evidence linking smoking to neurovascular accidents, but I don’t see any evidence linking sex with bleeding AVMs. The other thing I would say is to listen to your body. Don’t push yourself too much in any field right now, or try breaking any records!
Good luck
Jonny

2 Likes
13

Thanks for the comment :3 I’ve been trying to chill myself more when it comes to thinkimg having sex is gonna cause a rupture.

My neuros had told me there is no risk of doing it(as long as it’s not in a hardcore savage way lmao) and that just let me go with it. Haven’t had any problem with sexual activity or other things like stretching, walking several miles, etc. Actually the only serious sympton I ever had was seizures and that cuz I used to smoke A LOT of pot even after being diagnosed(by a nurse, didn’t talk to a neuro after I got sober). Stopped and life has being pretty normal ig

I will probably go down on face to face sw as there is always the stress of hooking up with people you don’t know and std’s. But for the rest I think it’s alright.

I’m also trying to eat healtier, drink my 1.5L of water a day, and learning how to relax. Been taking spironolactone for some months so that helps reduce bp and psychiatrist recently prescribed me clonazepam and BOY I’M FEELING GREAT. At least it makes me sleep better, stop overthinking and relax.

What kind of sports do u say u practiced appart from running?

1 Like
14

Such a slippery slope,

There’s just no one right answer at all - I still lift very heavy when I work out & did before my rupture.

My BP stays stable, so I dunno - I know we don’t want to stop living

Just hood for the best & “try” your best - all we can do

All this sex talk tho, hmmmm - LoL. . . I remember, when I got back from icu & still couldn’t fully walk. But, I got back at it - :joy: