Too Put It Bluntly.. Can We Have Sex?

[Maisie87]

personal question..

I've been wondering if it's safe for POTS patients to sex- I don't know if it's too much for the body..

I know some of us, like myself, are so weak we can barely brush our teeth.. . so having sex is out of the question.

I asked my doctor about it and he kept saying, "all you need to be worrying about is getting better".. yea hello! I know. I'm just curious.

Just wondering if any of your doctors have commented on this at all..

Maisie

[kayjay]

I have never asked but I can tell you that I tend to vomit. I feel very sorry for my husband. but it does make me sick. I don't think it is any more harmful than any other activity. Just don't do it standing up

[Maisie87]

wow im sorry, I wonder why..

haha. not standing up- noted. thanks

[firewatcher]

To quote my neurologist (heavy Indian accent required:) "Take your Klonopin if you anticipate having intercourse."

To quote my OB/GYN (no accent:) "Sex stirs up a whole lot'a catecholamines...if you do it right."

I only have POTS issues if I um, achieve, um...

Then it creates a big spike in my headache and tremors. If you have MCAD or mast cell issues, it will also cause a flush that is directly proportional to the intensity of the... um...

[Notgivinup]

To quote my neurologist (heavy Indian accent required:) "Take your Klonopin if you anticipate having intercourse."

To quote my OB/GYN (no accent:) "Sex stirs up a whole lot'a catecholamines...if you do it right."

I only have POTS issues if I um, achieve, um...

Then it creates a big spike in my headache and tremors. If you have MCAD or mast cell issues, it will also cause a flush that is directly proportional to the intensity of the... um...

Interesting. I'll have to take note of that. Lately, well, for a long time now I haven't had the desire for sex at all. My poor husband.

[delphicdragon]

PROBABLY TMI!!!

I'm the opposite. Orgasms help my POTS and can even short-circuit the adrenaline rushes. The relaxation afterward seems to be most beneficial. Worst thing that happens is my hips and/or sternum dislocate, but that's the EDS not the POTS. The boyfriend has gotten used to that.

Sara

[lifesaver]

My husband is no longer interested in relations---long story. But when I was active, sex made me feel better---it just took a long time till I could move my legs and get on my feet--I was weak as a kitten. Think all the blood went to--well, you know. lol

I find some occasional self-help to be a good thing for me, all those endorphins released do a lot for me and I have a day or so where I feel better.

Becky

[Chaos]

Thanks for the blunt question. I'm glad for the info and opinions!

Personally I find my tremors get really bad at times during "the act" and I frequently can't fall asleep afterwards. Even with a "successful encounter", I still am jittery and keyed up like crazy. Glad my husband is so understanding. And, who needs sleep anyway?

[ladyt]

hi..

It depends for me.. It can have a pain reliving effect for me (but somethimes i gett more pain becuse of it so). And at night it either makes me sleepy ore quite the oppesite so...

But i prefer quikes and litle forplay now.. i gess my partner should be happy about that, the no forplay thing...

I am very position limited so that is a bitt boring. i have fainted during sex, its not a turn on I gess a litle limited is better than non at all... But i miss being a bitt more active in the act....

[firewatcher]

" Lately, well, for a long time now I haven't had the desire for sex at all. My poor husband. "

I (we) went for several YEARS this way. My endocrinologist did a weekly hormone screening over a month and found that my sex hormones (lh, fsh, Estradiol and Testosterone) were "barely adequate." My OB/GYN put me on hormone replacement therapy and BING! (I swear it was like a switch!) "Hi'Ya Honey! Glad you're home, what'cha doin' tonight?" My OB/GYN got home-baked goodies and a big THANK YOU! He is my husband's favorite doctor now.

[EarthMother]

I had another holter test done in 08 and decided I would keep a DETAILED diary on a separate sheet(s!) of paper to attach to my record. I made sure to do EVERYTHING during that 24 hours that I wanted data on like situps or other floor work , walking up stairs, using the loo, taking a shower and yes Sex too! I even glanced at the clock after organism so I could make a detailed note after cuddling in the afterglow. For me, it gave me the piece of mind I wanted ... and i'm sure a lot of funny jokes for the lab techs who read my holter diary!

We all seem to be different in this regard. For me, yes it is possible to have amazing sex in the midst of POTS. Now "amazing" may well look different now in my late 40's than it did in my early 20's. I don't do it standing in the shower or like I am in a triathalon any more.

For me and my husband it is a VERY SLOW pas de deux. If I don't have the energy to spend an hour laying in bed with gentle touches and graceful waves of movement ... then I'll make better plans for another night to secure that time.

I don't feel any better worse the next day by way of POTS after a night of love making ... but when my body is at its worst and the pain and agitation are high sexual touching provides an amazing contrast to how good I can feel inside of this dysfunctional body.

For me, its also an important bonding time with my spouse. Most days I feel completely worthless with very little value added to his life ... so the fact that I am still able to rock his world warms my heart.

Intimacy and sexual expression contain a wide range of possibility. If POTS has taught us anything it is creative adaptation.

[Sophia3]

ditto Earth Mother. You save me lots of writing.

especially on the 'creative part'. if you are married or in relationships, creativity is needed to keep all happy & healthy imo.

There is always 'a way to get things done' !! w/o causing a flare. The end.

[janiedelite]

For me, its also an important bonding time with my spouse. Most days I feel completely worthless with very little value added to his life ... so the fact that I am still able to rock his world warms my heart.

Yes! I do feel so inadequate in how I provide for our little family any more, but I find it of utmost importance to maintain this bond.

Firewatcher, thank you for reminding me to ask my GYN about my amazingly low levels of sex drive. I've always blamed it on the persistent fatigue and pain, but it would be great if there was a hormonal fix. Although, with my recent cardiac issues my docs won't prescribe me any type of hormones right now anyway...

We'discussed this in previous posts, but I also struggle with feeling constantly "over stimulated" down "there." I'm not sure if it's related to the small fiber neuropathy burning that I experience in my extremities. I do find that I'm fully able to enjoy sex once I'm fully rested (I mean REALLY feeling good and relaxed).

[bjt22]

If I'm not in active pain or too nauseous, sex is pretty good. As someone else said upthread, it's not as if I'm still trying to prove that I can do it like a 20 year old. Frankly, my husband wouldn't be up for such performances, either, so it's all right. Interestingly, because of of the various blood pooling, I think I'm even more orgasmic than I was when I was younger. Now, as someone else said, I'm not getting up afterwards and doing much....but come on, who really needs to get up and run around after the act, anyway??? I often can tell the next day....I'll be more symptomatic, but you know what? Too bad. I've given up too much already. I have to have some sense of normalacy in my life. My husband used to fear that he would literally kill me, but after all of these years, I haven't died from it. We're well enough in tune with each other that he knows without my saying whether I need it to be a slower, more easy event or whether we might be a bit more active. There have been occasions when we've had to stop mid-act, and I always feel horribly guilty, but my husband is very understanding. There was the one infamous occasion when I did actually pass out for what was probably a minute, but we just laugh that one off...husband keeps insisting that he probably bored me into passing out, while I keep assuring him that it was probably quite the opposite!

I have found that having a glass of wine before hand helps keep me more comfortable, and yes, increases the level of desire. Keeps me from getting the angina pains and and probably helps me to not mind some of the other symptoms so much.

[Maxine]

We have been able to have great Sex for 10 years since I crashed with my POTS. The first year took me about 3 of 4 months before I even wanted to be touched because my sympathetic servous system was in constant overdrive. When things clamed down with that, the sex began again, and it hasn't stopped.

I do have to rest----usually lying down for at least a half hour after the big "O". It does take a lot out of me, but for the most part it's as great as it was before my POTS in not more so-------------the big "O" I mean--- .

bjt22------I do think the blood pooling makes things even better. That's what viagra does-----that's why they tell men not to take nitro with it as it can cause a dangerous BP drop. Who would know that some of us can actually benefit with our own "viagra effect"------------but without the viagra.

There have been times when the big O is more difficult to reach when my spine pain is at it's worst-----but I do get there. Thankfully this isn't often.

All in all I do pretty darn good for being my body being the mess it is.

Maxine :0)

[MightyMouse]

I've been told by several of my docs that it's perfectly safe for me... however, I have absolutely zero desire, compounded by nearly constant nausea and then there's the pain that waxes and wanes but never goes away. I've thought perhaps I should see an endocrinologist, but I'm so reluctant to go to yet another doctor.

Nina

[Stace915]

Since we are on the topic.... I have never mentioned this to my doctor, well because I didn't think my GYN would have the answer and I am not comfortable talking to my cardiologist about it. I have fainted a few times during sex, which of course is awful but luckily its been a while since that happened. However lately I have noticed that after the, what are calling it.. "big O" the lower half of my face goes numb, well not really numb I guess it get tingly/numb. It wears off after an hour or two but its really odd feeling.. it freaks me out a little. Does anyone else get this? I wonder if it is related to POTS or EDS, I know a lot of people talk about neuropathy but I honestly don't know what it means...is this connected?

[Maxine]

My face doesn't go numb, but my legs get really weak sometimes. My face went numb just after Thanksgiving when we went to see the Lights Before Christmas at the Zoo. I was trying to walk the same pace as everyone else, and I started to feel really bad. My adrenaline surged, heart raced, and my face went numb. Scared to heck out of me. I'm wondering if it has something to do with a sudden release of adrenaline----(AKA---norepinephrine).

http://en.wikipedia.org/wiki/Norepinephrine

I just think it's one of those odd things that goes with POTS. Sometimes I feels like POTS is a dumping ground to balme everything on, and wonder if this could get in the way of a diagnosis of something else going wrong with my body.

Maxine :0)

[Stace915]

That seems logical, it scared me the first time but now I know it wears off so I try to not freak out and like you said I have started to say oh it must be from POTS, everything I ever mention to the doctor they tel me it is part of the autonomic nervous system yadda yadda so I guess I have just started to assume that any new symptoms are also just part of the autonomic dysfunction!

[Janey]

To be utterly honest:

It completely depends. There are occasions where I feel totally fine (as long as I have a glass of water afterwards!) and other occasions where I've been in so much pain down one side of my body that I can't move!

Another factor is that I feel nauseated when I start moving around, and as the time I have sex is usually in the evening (I couldn't even contemplate it in the morning) after having a meal and going to bed, my food is not completely digested, so any form of movement/exercise causes it to come back up again.

The WORST thing comes when I can't get lubricated "down there" even if I'm ready for it in my head and my energy is up to it. I blame that on POTS too... Anyone else think it's to do with POTS?

Janey

[smiles]

Sex--what a beautiful thing. Before or after dysautonomia! It's just different now. My husband of 27 years has adapted and i have accepted my limitations. We have learned to be creative as someone else said.

Obviously if I'm in a flare up or having a non functioning day it is out of the question. On my better days or even my 1/2 good days I'm up for it. I crave the intimacy and will deal with the aftermath of potential exhaustion. My husband is so accepting of my limitations and glad to get what ever I can give him. I am actually the initiator usually. Sex is shorter now than it used to be to prevent exhaustion. I had a catheter for a few times and we even learned how to do it with a catheter----very carefully. lol. (I taped the catheter to my leg in several places so it was out of the way.) I have occasionally gotten brain over stimulation or overload and had to slow down or just let him finish pretty quickly. It was still worth it. Sex is always worth it to me. Part of it may be for me that I can prove to myself that I can still in some way be who I was before and enjoy some of the things I used to enjoy. New positions have helped too. I want to please my husband and love of my life and he wants to please me so we make it work. Our creativity brings increased communication which also helps us as a couple. I love sex. It is a natural expression of our love for each other and I am so grateful that I can still have it as part of my life. It makes me feel important still. It release good hormones my body likes. We text each other intimacies meant just for each other. I am one of the lucky ones who has a man who is committed to standing (or laying,lol) beside me thru thick or thin, in sickness or in health. I rejoice in the man God gave me. Sex is an expression of that and worth any reprocution I may have to pay for afterword.

Smiling Smiles

[firewatcher]

Janey,

I hear you! I complained for six years and always got: "Well what do you expect, you just __________(had a baby, aren't sleeping, had Mono, etc.) It didn't matter how "ready" I was or how much lubrication we used, I would end up in pain and bleeding. We had "mercy sex" for years. Since going on HRT, it's like I'm a newlywed again. My husband said that I'm back to the woman he married. To be painfully honest, it had gotten to the point where I was so highly dysfunctional, that I could not even please myself. I had no drive or ability at all.

This is NOT a mood thing, or a psychological thing; its a dysautonomia thing! If you were a man and had the same complaints it would indicate a "serious problem!" but unfortunately since female sexuality is still so unknown (chemical, hormonal and psychological) it is always a "mental" thing for us.

Hormones have helped me, but its not a one thing cures all fix. Don't accept the "in your head" diagnosis! If I had not had such a dramatic shift in my mood and ability, I would have accepted that. I'm very glad I didn't. Good luck!

[Guest tearose]

What is sex?

Okay, so it just is not that important.

[tinkerbella]

SO Where can I find a new man at this stage of the game? I'm soooooooooooooo lonely I could cry!

[firewatcher]

What is sex?

Okay, so it just is not that important.

Sex is that area on all those medical forms you fill out that you check: []male []female.

It determines whether the nice doctor that you see says: "turn your head and cough" or "skootch down and relax."