Sex POTS

I'm just going to warn everyone now...this entry is going to be a lot of TMI.
I've debated a lot about it and I think it's an important thing to talk about in case any other POTS patient is out there researching what life with it is like.

We're going to venture into an arena that is extremely private for me: sex and having periods as a POTS patient. I'm going to try and keep in detached and clinical, but the fact is it's still going to be about those two things. (I lumped them together to get them out of the way)
So, you've been warned.
I apologize whole-heartedly for making anyone uncomfortable.
Okay, here we go.
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POTS presents a daily challenge even on the best of days. So many things affect it: moving, postures, the weather, temperatures, pressures, stress, physical exertion...the list goes on and on. Just getting out of bed, showering or using the bathroom can be tough some days.

Even on the best of days, I have a hard time functioning like a normal person.

Being a woman, part of life is having a special visitor once a month...

For a normal woman, that visitor can range from being mildly irritating to being an all out horror show. Before I had POTS, mine were somewhere inbetween the two extremes. I had migraines and bad cramps, but I could function normally. I started taking birth control and it completely regulated my periods and even helped my migraines and cramps. I won't say having it was a pleasure, but it wasn't intolerable.

Now, however is a completely different story. First of all, I had to stop taking birth control. I found that it exacerbated my symptoms and made me very sick. My periods have become highly irregular. (This last go round was 8 weeks in between.) My legs and feet feel heavy and uncooperative, and the pooling of blood in them is worse that normal. They go numb quickly, so I have to have them elevated almost constantly. My whole body trembles, and I'm very weak. I wear out easily. My nausea is almost constant for the entire duration. I have HORRIBLE blood clots- massive, painful ones. My period also lasts for-what feels like-an eternity. Much longer than it used to anyways.
I know, a lot of these things women have every day...but when your body doesn't regulate itself like everyone else's does, it's much worse.

The pain of cramping is much, much worse than it used to be. Pain is a trigger, so my heart rates spike when the pain is worse, which makes my pressures wonky and makes me feel sick and tachycardic. (It's like being stabbed in the ovary, and then having a small heart attack as a result. Painful, then scary, then painful.)

While it's awful, and borderline unbearable, it happens every few weeks and is more-or-less predictable. I mean, I've had my period since I was 14; I know it's not a pleasure cruise. This is just taking that awfulness and making it more intense. Knowing what's coming though makes it a bit more manageable.

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Now sex is a different ball game altogether.

Sex isn't a scheduled event...at least for me it's not. (Maybe for some people it is, but not for me)
Sex is all around a very difficult and, sometimes, uncomfortable thing for someone with POTS.

Normal Scenario: Your 'average' person will be with someone they're interested in, they'll start getting into the things leading up to sex (kissing, etc...whatever it means to you) and that gets their heart rate going. They're body is equipped to handle these changes naturally, so it's smooth sailing for them. They get turned on, they 'do the deed', they (theoretically) enjoy it, then they relax and enjoy post-coital bliss.

For a POTS patient, this isn't the case. The biggest problem with POTS is the fact that the body is dysfunctional at handling blood pressure changes, and compensating for them.

POTS Scenario: You're with someone you're interested in having sex with. Cue foreplay (kissing, etc) *BAM* heart out of whack. BPs out of whack. Arrhythmia sets in. Chest pains...sometimes so bad that it scares you. You feel like you're having a small heart attack and you haven't even done anything yet. This happens every time. Some attacks are worse than others.

Let's assume this is a minor attack. These things happen, but they're tolerable enough that you can get through them. Next your big challenge is: your body is uh...not in the mood. Your heart rate and BP are not well controlled...and to be in the mood, certain areas of your body (male or female) have to have well-controlled, constant, steady blood flow just to make the necessary things happen to be turned on. Have a POTS attack while making out? Chances are even if your mind says 'yes' to sex, your other areas are not prepared or able to. Think 'that must be embarrassing'? Guess what, it is.

It works the other way around too. With POTS, your nerve are affected to so your sensations are also off. So, all those pleasurable zings down your spine when you get kissed just right? Sometimes they happen, sometimes they don't. That feeling of being turned on? Sometimes it happens, and sometimes it doesn't. So your body might be turned on, but you'd never know it.

(Sounding complicated already? Good. It is.)

Okay, let's say it's a perfect scenario...you get turned on, you feel turned on and your POTSyness has been minimal up until this point. Here's the moment of truth: the actual sex part.

POTS is called Postural Orthostatic Tachycardia for a reason. Different postures make it worse.
So...naturally you can see where the problem now lies. Sex requires different positions and postures, even the most basic of them present problems. At best, you lose feelings in hands and feet...at worse, you have a major POTS attack (heart pounding, chest pains, inability to breathe-not the good kind-, limbs going numb, arrhythmia, dizziness, nausea, so on and so forth...) Some positions are better than others. Some are worse. Each person is different.

You have no idea how humiliating it is to be half way through something, and have to stop because your face is ashen, you can't breathe, and your heart is squeezing so painfully you could cry-but I do. You look and feel like you're having a heart attack. You scare the hell out of your partner. Not sexy.

Let's say you've made it through all of that with minor symptoms. (A rare occurrence.)
Now, the afterglow segment. Or, so you'd like to think. I mean, you've made it through all of that so now you should at least be able to relax and enjoy it right?

Unfortunately, no. Right afterward, your BP drops significantly in a normal person. For someone with a normal body, they relax and their BP drops but they've recovered after a minute or two and their bodies can bring them down gently.

For a POTS patient, that significant drop in blood pressure is a big deal. Sometimes, it feels like your heart just fell out of your chest. Coming down afterwards feels like touching down a helicopter in wind shears: jumpy, rough, painful, nauseating. Sometimes there is trembling. Sometimes it's another full out attack.

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Now, for any POTS patient out there reading this: know that it is possible to have sex. It's possible to get through these things, and it's possible to deal with them as best you can. The plain, brutal honesty though is that it could be like everything I've outlined. That is what my sex life is.

I'm lucky to have an incredibly understanding partner, but it crushes me often to not be able to have sex as often we'd like to- we're only in our 20s. It's embarrassing to have my body fail again and again and again. It's hard to never feel likes I want sex even though my body says yes because POTS affects my sensation recognition. It's hard to want sex and have my body be unable or unwilling to want it too. It's downright humiliating to have to stop at any point in the process because you're clammy and pale and feel like you're having a heart attack. It's scary and upsetting to see fear on your partners face while you're having an attack. It's hurtful to see them wanting to help you but being unable to.

It makes me insecure, it hurts, it's upsetting to be unlike everyone else my age in this arena too.
It makes me feel like less of a person because I can't share this with the person I love like everyone else can and does naturally, with minimal thought or effort involved.

To the normal people reading this: The next time you have sex (make love, whatever you call it)... remember how lucky you are, and be grateful for the experience and the ability. You're extremely fortunate.