POTS and intimacy

[Dizzy Dame]

Hi guys,

First I wanted to say that I'm sort of embarrassed posting this topic, but I've also been too shy to ask my doctors and I NEED answers.

I was wondering if intimacy is possible for any of you?

I haven't been able to be intimate with my boyfriend since I fell ill... and it's really starting to wear on the relationship.

Any advice?

slightly embarrassed,

Lauren

[dizzygirl]

hi..

Um I wanted to reply to your topic..

I too have been too embarrassed to discuss "intamacy" issues and syncope w/my doc.. for obvious reasons...

Um.. I dont know this is a hard one..I think that it is going to depend on you and what you can handle..

On a personal note..the intamacy department in my relatioship has gone down the crapper since I started getting really sick...and um.. when there is intamacy..I tend to pass out cold.. my system/body just sometimes cant handle all the excitement!! LOL its a real turn off....

Um since we are on this topic.. do any of you have labido problems?

Lauren..I understand what you are going through.. I wish I had some magic answers.. I know that once illness stricks that it just causes problems all the way around.. and is very hard on relationships... maybe you can sit down w/ your other half and talk to him about your concerns.. you know keep the lines of communication open...

if you want to talk more PM me Ok..

[morgan617]

From my understanding and from many previous posts, this is a problem for many of us. And nothing to be embarrassed about.

Intimacy is very difficult for me. It makes me really ill, physically. Fortunately, I have been blessed with a wonderfully understanding spouse. I think it just follows that when we feel like crap, our libido does too. especially for women, I think it doesn't become the first thing on our list of priorities, much to the frustration of many of our partners.

But it is a fact of life, when we feel bad, we don't want to make love, and when it sets off all the things that make us feel bad, it's not something we look forward to.

I tell my husband men will, as a rule, not even care if the woman lies there half dead and he agrees that unfortunately, most men would fit into that criteria.

I feel if your significant other can not "get" how difficult it is, and it's not a personal thing, (You want to do it, it's just not worth feeling that bad, and you don't want to feel that bad) then talking with a therapist might help. For some people, this is a really huge issue, for others, they come to terms with it more easily. I'm not sure there are any real answers. But there should be love and support on both sides. morgan

[Dizzy Dame]

Thanks Morgan,

My boyfriend has been really understanding so far. I just worry I guess.

This may sound wierd, but I think it's affected me more than him. He's a DJ and a large night club in Honolulu, and I get so insecure knowing he's out surrounded all of those beautiful girls at the club and I'm at home drinking gatorade and obsessively taking my bp. (gosh, it sounds even more pathetic on paper )

I know I can trust him, I just feel sooooo inadequate sometimes, and that's made me sort of insecure.

It's good to know I'm not alone in this though.

Thanks again,

Lauren

[Sophia3]

Hi

Yes, I have had my share of problems with sexual response...It's frustrating to have sex go from being one of the top 10 in the priority department to top 100.> After little things like standing, walking, eating! lol...sheesh...this part of the illness has made me feel really old. We always want to show love when we can but not if it makes your heart rate zoom or room spin.

Here is a site that expains the autonomic connection...and it mentions the 'psychological' aspects (I don't think that means us, OUR is definitely ANS related) AND it mentions how head injuries affect the sex drive.

This is a site that may have way more info than you needed to know but it's an interesting page to read through.

http://serendip.brynmawr.edu/bb/neuro/neur...eb1/lwelsh.html

[DancingLight]

Lauren,

Kudos to you for posting on a difficult subject.

This topic has come up before, but doesn't always get a lot of responses...I myself, so far, haven't been very brave about. (Which is terribly embarrassing b/c I used to LOVE sex education and was very active in health/sex education on my campus and even worked at a family planning clinic! yikes!) It's so much easier to teach OTHER people than for me to talk about my OWN experiences on this topic!

I am really grateful morgan replied to this topic...b/c she is always able to approach subjects like this soooo incredibly honestly and validate us...

Recently I got one of my Library for the Blind catalogs and they had a new book on tape about sexuality and disability...I will see what it was called if I can find it. I was kind of wanting to listen to it sometime and then post if I thought it would be helpful to others here...

The whole issue of sex and sexuality makes me feel very inadequate...like 'less of a woman.' It is a really tough one. Will somone even want to be with me? And how do I even begin dating again (if I'm ever NOT housebound!) and explain the sex stuff???? My friends are all getting married, having babies and having LOTS of sex! I feel so far apart from that...

I wish I had better answers...I just wanted you to know that you are not alone. When I first got sick seven years ago, I was still in a serious relationship with a man and I just felt tooooo darn sick to do anything...so I understand you on that part. You are not that only one who has these concerns, questions, etc...

It sounds like you and your boyfriend are able to communicate and keep things open...and that is the best that we can ask for.

My boyfriend at the time was not able to be so patient...and got pushy and frustrated....

Thanks for bringing up this topic and being honest...I know it is really hard (as you can see, I haven't really disclosed much myself here...but it's a step that I responded to this topic at all! )

Emily

[melly4]

This is a difficult area for me. I'm impressed by how brave everyone has been to respond to the topic, and for Lauren to post it. My husband and I had a very active sex life (I have four kids to prove it!) before I got sick. Now, I feel either too tired to bother or feel as if I'm going to pass out, even when lying flat!! And my husband hasn't been the most understanding at all times, which really bugs me since he's a nurse. It has been really hard on the marriage. He threatened to leave last weekend because he said he's tired of dealing with illness. I know he's surrounded by sick people all day, but I'm his wife!! Whatever happened to "in sickness and in health"? And our 13-yr-old was just diagnosed with POTS!!

I'm really happy for you who have supportive significant others. Hang on to them!!

Sorry to add my sad tale.

Melly

[dizzygirl]

Melly.. I am so sorry about your situation.. that is just sad..

i admire those of you on this board who have significant others to love and support you.. no matter how hard it gets.. that is wonderful!

Dancinglight said....

"The whole issue of sex and sexuality makes me feel very inadequate...like 'less of a woman.' It is a really tough one. Will somone even want to be with me? And how do I even begin dating again (if I'm ever NOT housebound!) and explain the sex stuff???? My friends are all getting married, having babies and having LOTS of sex! I feel so far apart from that..."

wow does that really hit home with me.. I was just telling a friend of mine the other day.. after finding out that another friend was having a another baby.. that it really saddens me that I am not married and that I dont have any children.. and marriage is not in my future at least not any time soon anyways.. ..But anyways. I spoil all my friends kids to death.. and before I got really sick .. I always had a house full of little kids running around my house.. now I just get to talk to those little darlings on the phone every now and then.. its not the same..

sorry went off on a tangent there..

But I can understand and empathize with alot of what is being said on this post..

Too bad we cant like genetically engineer the perfect man.. to have all the qualities that we desire most.. I would like a man about 6' 3' 200lbs.. and Buff!! strong and muscular!! LOL who has more on him mind then a romp in the sack.. and can appreciate the finer moments in life..

ok i am rambling now... LOL

[Ernie]

Hi,

I have the opposite problem. I have very high sex drive. I don't know if it's related to the high adrenaline but it is one of our family trait!

[Dizzy Dame]

Linda: That is awful! Just because you're sick doesn't mean that you're any less of a person! That really t-d me to hear your man's been saying that stuff to you.

Melly: I'm sorry to hear things have been rough between you and your husband. Hopefully it will get better.

Emily: You're such a kind and well-spoken person, I'm sure you'll meet someone.

[morgan617]

Okay girls, we are meant to be cherished!!!!!! Would you treat your partners the way they are treating you? If the answer is yes, then I guess you are meant for each other, but if it's a resounding no as I expect it is, what the heck are you doing to yourselves?????

Sex is great, but it's the first thing as a rule to burn out. Then, if you are with an abusive man, and mental abuse is abuse, and he can't get his viagra, all you've got is no sex and abuse. You are special, unique and deserve better. If you think it will be too lonely, then you haven't grasped that it's even more lonely to be with someone and feel alone.

Every day I thank God that I have my husband. But he is not my first one. I had one just like the above described. And was never so sad in my life. He/she/whoever can not make you feel worthless unless you let them and aren't you going through enough already?

My 24 year old son is positive he's going to die a virgin, because "girls only want guys that treat them like blank" Please change that attitude that nice guys have.

Em, he's out there looking for you, and for the rest of you, you are strong and beautiful. Sick, but strong and beautiful, show the world...

Lauren, realize how lucky you are and trust him till he gives you a reason not to. He obviously cares about you a great deal. If you set him up for failure, he will. There may be pretty girls at the club, but he's coming home to you....

mommorganisalldonelecturing

[LisaColumbus]

I just wanted to say thank you for bringing this subject up. It's nice to know that I'm not a freak! I just assumed my non-existent sex drive was just me, I didn't realize there could actually be a reason for it. I told hubby about it tonight, it actually made him feel better knowing that it's not because I dont find him attractive

Thanks again

[DancingLight]

oh morgan,

you are always right on! that was such a great post....AND made me see the morgan i love so much peeking through! that makes me very happy.

i was thinking about this thread a lot today, and dizzygirl's post and melly's post...and just hating what melly's husband said...and also so upset for dizzygirl...

and i thought about how i was with a guy when i first got sick...i ended up being the one to break it off...and i do NOT regret it.

yes, i am single and wonder if i will find someone...but i also agree wholeheartedly with what you said--you literally took the words out of my mouth--i did not want to be 'lonely together'...that was worse than being 'alone'--my life is soooo full in so many wonderful ways and i have amazing friends. i have been able to truly become ME over that past few years and that is a wonderful gift...

now, i realize that for melly and others this is a bit more complicated with kids and financially--i was in a position that made the whoel thing a lot easier...so, i cannot speak for everyone, obviously...just myself...i know it's much more complicated with marriage, kids, etc...i was just dating someone and was only 22...

thanks morgan and lauren....you're the best. i'm really praying that my 30's are going to be my healing decade...and marriage will come in time. until then, i will enjoy what i DO have in my life...

well, i'm off to crawl into my 'ol queen size bed and make asher cuddle with me...

i'm such a bed hog, i don't know how i'll ever share anyways!

love, em

[DSM3KIDZ]

I'm in the same boat.no sex drive. Luckily I have a wonderful husband who also has no sex drive. Before I got sick I always wondered what was wrong with him. He never really needed sex. Yeah he liked it but wasn't the typical needy man. Once I got sick I actually appreciated this so I didn't feel pressured or guilty. Recently he saw an doctor and the normal testosterone is 300-1200 (something like that) and his one month was 220 and the next 50.

That ***** for a 28 yr old man. And now I feel bad that I used to nag him, I just never thought it could be a medical problem. My self esteem was shot for all these years so at least I now know it's not me.

Anyways he's having trouble getting treatment and when he does I hope he doesn't get a crazy sex drive because I don't want to disappoint the one who's been the most understanding and supportive through this illness.

Hang in their ladies.

dayna

[Dizzy Dame]

DSM,

That's funny that you mention your husband having a lower sex drive. My boyfriend now has never been a typical "horny male". Even when we were first dating, he never wanted to make love more than once a week. I think he could function happily on only once-a-month (although after six months of illness, even HE's getting restless).

I should have him see a doctor. If his testosterone is messed up, it may need to be addressed. (Although I may eat those words later if he suddenly becomes an animal...he he).

I'm really glad I posted on this. I feel so much better knowing I'm in the same boat with you guys. (although I wish it didn't have to be this way for any of us)

- Lauren

[melly4]

Morgan, thank you for the lecture. I did ask my husband the night he got so frustrated if he thought I would leave HIM if he was in an accident ( which can easily happen driving around here!!) and was unable to function sexually and was totally dependent on ME for a change. I think it made him rethink things a little bit. I told him he better be careful, just because I can't work right now. I'm waiting on disability, but I hope I'll be able to go back to work with help from the right doctor. I had a wonderful career when I met my husband and didn't depend on anyone for anything. I hate being in this position of needing someone to take care of me. I've always been the caregiver. That's why I got into healthcare. That's why I had children.

My husband has turned around (for now, anyway). He's getting me a dog I want so I won't be lonely when he's at work at night. Maybe he feels guilty for blowing up. But your post made me realize that I don't deserve the "sick wife bashing". I'm strong enough and resourceful enough to not let myself or my children be subject to his tantrums again.

And to you other ladies in the same boat, unite!! Don't stand for it. Remind your horny companions that the tables could turn in a moment's notice.

Thanks, everyone, for the support. I was really embarrassed to post what happened the other weekend, but needed to vent. Now, I know I'm not alone, not that I wish this on anyone.

Melly

[hopeful-girl]

I agree awesome post. And WOW you got it right Morgan. I used this term before. I'd rather be alone and loney than with some one and loney. That is just WAY more miserable ;-).

Melly don't let him bring you down. You have to be strong for you. In the end ythe person you always have to live with is your self. I know no matter how much we would love to get away from our selves we never can. Don't let him over whelm you. You are a beautiful person and deserve the best ;-)

My husband and I have other problems we are working on. But when it comes to sex. I am the one who always had the stronger sex drive. And the sad thing is. I still have a strong sex drive and I yearn for it. But I abstain (SP) from it because for me I get to sick feeling either during or after. Ya during my heart rate gets up and I have to concentrate on just relaxing. But it is afterwards that knocks me on my but and I always end up puking. I straight out told him about 3 months ago. That we had to change our sex pattern if we were going to have any. There can be NO more wam bam thank you mam quickies. That is to much for me. So we have been experimenting. What we are trying to do is concentrate on very mellow relaxing 4play. Candles, massage and very light 4play. Just really tyring to keep it at a very mellow level. It really does work. But I do not always climax and I still end up throwing up afterwards. But for me it is worth it ;-). I look at it this way. If we take it easy and make it like Kama sutra fun and relaxing it is totally worth the couple hours down time. Because it makes me feel closer to my husband and I do not want to loose that bond. How ever I am also lucky he handles all this really well. It is tough on him at times because I can be mean and cranky and have my moments. Buthey so can he.

And the most important thing is communication. That is what we are working on threw counceling.

[Poohbear]

Good topic.....it's nice to know we aren't alone in these issues!

Personally, I don't think my "drive" is much different that that of my friends. I'm 37 and many of my friends have babies and toddlers and they talk about their libido being up and down (depending on how tired they are, where they are in their cycle, etc etc). This is something that definately changes for many people as they age and sometimes imbalanced hormones are to blame. It makes sense that the less energy you have the less likely you will want to be intimate.

I do find where I am different than my "healthy" friends is how awful I feel during and after.

It's a tough thing. I feel similar to Em. I am single, have (at least for now) lost my ability to meet new people and date. I get so sad sometimes and I feel that even if I somehow met Mr. Right that I would not be worth having. I feel like I have too many needs (cooking, cleaning, laundry etc) and I would feel guilty marrying someone and having so much of the burden of taking care of the house and affairs . The flip side of that though is I know if I met someone I loved and the table was turned I would still want to marry that person. (I know my self worth needs a lot of work )

Anyhow, as lonely as I get sometimes I still know and understand (through watching some friends in bad marriages) that I would rather be alone than in a bad relationship.

To those of you who are already married, I can only imagine. I think it's important to seek counseling because this illness does affect everyone in the family. It's natural that spouses would sometimes feel angry, resentful, upset to see us so sick and struggle with many issues. They need someone to vent to as well and to have the help to try to find ways to adjust.

Of course they are going to get tired of dealing with it...just like we do. BUT, it is NOT OKAY for them to treat you bad or take their feelings out on you. Sometimes a therapist can really help in these areas.

[taylortotmom]

First, to echo Morgan- it's better to be alone than to wish that you were. Now, onto the sex. Libido is definetly affected in me partly due to a hysterectomy I had. My estrogen is much lower than it was and I'm not sure if I have any testosterone so I'm not hormonolly turned on- you know? However, I can give a little advice on the subject. One thing that helps is to let my husband know that nighttime IS NOT the righttime for making love despite what Jennifer Warnes says. I am too tired and do not get enough sleep as it is with having to get up early to get the kids off to school. So.... thankfully, my husband's schedule usually gets at least one day off during the week and that is "the day" you know. Not just for sex but for reconnecting. Our kids are in school and that is "our time". Daytime sex is much better because I'm not exhausted and it adds an element of change as well. I have to be very careful about getting up right after the act or else my body goes nuts. Heart rate and temp need to stabilize before I move. And you know the way I look at is if I die making love with my husband at least I will die with a smile. Okay, TMI. But... back to the original point- where there is a will there is a way you just have to be a little more creative. Go hug your honies!

Carmen

[morgan617]

Geez, here I thought it would be the silent treatment for being so bossy. It comes out of love though, I promise. We are hard enough on ourselves, without getting it from doctors, spouses, friends, significant others and I could go on and on. I can't believe a single one of us would choose this way of life.

Thanks for not being mad, and being the total romantic I am, there is someone for everyone, sometimes they just take their sweet darn time getting there.... knowseverythingandmorgan

[hopeful-girl]

To Carmen:

I LOVE your statement at the end:

And you know the way I look at is if I die making love with my husband at least I will die with a smile. Okay, TMI. But... back to the original point- where there is a will there is a way you just have to be a little more creative. Go hug your honies!

WOO-HOO and RIGHT ON!! Hey what better way to go LOL

My husband and I just talked about this post and we had a great conversation. I even learned some thing from him. He does not like to aproach me on sex because heknows I do not feel well and he does not like to make me feel any sicker so it makes him feel guilty and bad. AWWWW I did not know that! I told him look I am sick any ways so why not do things that give me pleasure even if the outcome is not always the greatest becasue see in the long run it keeps me so I feel like I have not lost every thing I enjoy and it helps keep me out of depression and feeling like I want to just give up.

Mwaaaaa to all of you!

Corina (hopeful-girl)

[DancingLight]

Poohbear,

What you wrote really spoke to me...that is very similar to how I feel...

Morgan,

Nope, no silent treatment for you...I didn't find your post bossy at all...I thought it was heartfelt and honest and empowering. But, then again, I have two parents who have 'bossiness' down pretty well...so maybe I missed that you were being bossy? he-he.

I know we were talking about sex mostly here, but I was wondering too if any of you just didn't feel sexy or attractive? It is hard for me to feel pretty or sexy anymore...I LOOK like absolute crappola and feel like crappola. And, I feel like I've just become an 'object' for the docs? I'm just a bundle of gross bodily functions? Diarrhea and puking and red bumps and all these goofy things.

And, if for a moment I feel sexy, I think, what a joke...it's like teasing myself with something I can't have or the man I think is sexy can't have...

Does this make one bit of sense?

I really hear Poohbear on the issue of finding someone who would want to 'take so much on'...

Okay guys, I know this sounds so down in the dumps...sorry...this is certainly a 'weak spot' for me.

In every other way in my life, I honestly feel more full in my heart and soul than I ever have.

And, I KNOW that marriage isn't everything. I'm much more at peace about that.

I grew up with two sociologists, so I am often TOO much ofr a realist on this stuff!

Really though, it is hard and we need to let ourselves realize how much society makes it hard for us in this area...we are bombarded with images of sexy women with gorgeous bodies who seem to have endless sex drive and endless access to satisfying that sex drive.

We are also taught that marriage and children will complete us...and it took me a while to really learn that I am complete NOW. Yes, I want to be married and have children, but I won't spend my time feeling like b/c that isn't a reality I can't be happy. I have a cousin who is almost 40 and she thinks that things will magically be perfect if she could just 'find a husband and have kids'...

More than anything, I want some quality of life and my health...

Okay, this turned into quite a post...oops...

I think I'll go watch Desperate Housewives...except those women do make me feel a bit inadequate with their perfect bodies and all!

Lauren, thanks again for bringing up this topic and to all of you who were honest and also who were able to speak to your partners about this...that is really amazing!

Emily

[Dizzy Dame]

Emily,

If we were in victorian times we would be the sexiest creatures... thin, pale and swoony

[Ernie]

Hi Emily,

When I am not in my wheelchair I feel like a woman who has a sexual life. I am overweight and men look at me with sexual desires. I used to be surprised because I thought that men only liked slim women but I have learned that some men like chubbier women.

Anyway, when I have just fainted (for at least 3-5 hours) I don't feel like a sexual human being but when I get to my normal self again I have high sex drive. I feel like a teenager constantly discovering puberty. I would often like to have a lower sex drive because I hate thinking about sex so much.

I was surprised this summer also to discover that even in my wheelchair some men were looking at me as a sexual women. I was very pleased and it made me feel better.

Well enough about my sex life!

[Sophia3]

Ernie,

I would LOVE to have your problem! LOL. I was always a woman who ranked sex up there with food, water, exercise, roof over head, money to pay bills!!

And I believe weight has nothing to do with it. Being or feeling sexy is 'an attitude', I sadly, wish I had back. I have noticed that with some men I have met. They can even be WAY overweight but are still appealing as all get out.

Also a friend of mine and her twin sister have high sex drives and said it is a "family curse". Everybody on their fathers side had it as well!!

Gosh, I can't imagine TALKING to my late father about s-e-x, let alone talking about my libido with him!! Or even my mom!!

Heck, I often don't even THINK about it anymore so it really makes me feel like an old lady. Years ago my endo gave me testosterone via a compound pharmacy and it helped. A LOT. Even though my "free testosterone" was low normal, we gave it a try. It did help.

I am no longer in any long term relationship but still, it would be nice to have "it" go through my mind once in awhile.