Sex TMI

I am going to tred very carefully here bc I know this could easily break rules. If I do violate any rules I apologize. I do understand my post may be edited or erased. This is something that happened to me today and I thought you guys may want to think about it too.

I am married for almost 9 years but with my husband almost 15. I have been sick since Dec. every time it starts to let up something suddenly gets worse I get a new dx and I'm incapacitated again. My husband takes amazing care of me. We have been able to make love very little this year. He has not complained once. I know he is frustrated but he is being patient. Until tonight I did not realize how huge of a toll my illness has taken.

It was his birthday today. Little things kept upsetting him all day and stressing him out. I would keep using innuendo to make him feel better that he would get lucky tonight. Well right before he went to bed we were discussing something that turned into a discussion about money (really tight right now bc of how little I can work). So he was like just forget it I am going to bed. I knew he felt disappointed in the day so I grabbed him and started to kiss him. I tried to put so much energy into it. He quickly came around. He almost cried. He said to me. I have not felt you were this interest in me in a long time. My husband rarely cries.

I realized I have been so focused on getting to the end that I just assumed he was happy getting the ending and forgetting about the beauty of the process. I feel like such a heel. I can totally see how these feelings of him thinking I am not interested in him has been taking tolls on other facets of our lives. That feeling is one of the worst feelings in the world and I feel awful I made him feel that way. Sorry for the long post

I agree with Bill sweety I dont see anything whatsoever I would edit or delete. Just the opposite, its a very real problem for many CPers. If we find a moment we're actually at our lowest pain levels that thoughts of anything other than pain can creep in then we have to fret over whether the physical strain will cause undue issues afterwards.

For many our meds carry a potential to decrease our actual drive and desire or alter the ability to perform altogether.

Its a natural and necessary piece of any relationship and finding a way to balance the many facets of our pain and health issues and still contribute that necessary element to our relationships is the defining factor of whether that relationship will nurture and grow or wither and die.

Unfortunately methadone is one of those medications that rob users of all desire. Early out in my CP journey I divorced, for multiple reasons, not that but I was 43 at the time. I have had one relationship with my high school sweetheart in the 14 years of CP, 12 on methadone any I decided in all fairness no one deserves to be asked to tolerate all my issues and get little in return.

I've dedicated the life I have to my kids and grandkids, other needy folks from time to time. Had my marriage had a chance that aspect was one that would have to have been consistently worked on.

Remember your spouse, SO,whatever has no issues in that department and still find you desirable. They suffer self esteem issues and feelings of abandonment when you dont reach for them anymore.

Make a conscious effort to do that. A hug or a kiss can go a long way.

Sherrie,

I'm glad that you brought this up. I wasn't sure if I could do so, safely, either.

I have the most incredibly understanding spouse. While he isn't a "care giver" in the sense most of us women tend to be, he does give care by doing absolutely everything he can. If you may recall, we were on the brink of divorce just 2 years ago. It all hinged on my getting that first hip implant.

It wasn't the implant, it was the years leading up to it, I was so consumed with pain, surviving, not living, one pain med to another, and not being there for myself or anyone. I assumed because I was such a wreck, why would he want anything to do with me?

That,...was my mistake. He has kindly tolerated and supported me through those three major, and incapacitating, surgeries, all within a year and a half time. Then the bell rang. When I was ready in June to have my other hip done, he expressed frustration. I "assumed" it was because he was sick and tired of having a spouse who was always sick and tired.

Then he said it: "You get a surgery, you're in rehab, you come home and do rehab,....then you have another surgery,....go back to rehab,.... I miss you. I feel like I just get to see you, you just come home, and you're off again."

THAT was his frustration, more than what wild images I let my mind conjure up, that I was less of a partner because I was in pain and couldn't move well....He missed the feeling of knowing he was desired and wanted, and I made it all about me, me, me.

He taught me to open my mind up and to consider and remember his feelings for the many years we've been married, (how much he's put up with),...and what the final straw was. It was not about sex, it was about being a true partner and feeling those emotions and desire BOTH ways.

A huge light went off above my head at the years I wasted consumed in guilt over not "providing" my partner with attention because I couldn't imagine, in my broken state, that I would be worthy of Love.


Merrida

This can be a very delicate situation, I know how it affected my marriage. Intimacy in a marriage can be an important factor  that helps bind the  relationship together. It is by far not the only thing, but it is one of the things! When it is suddenly gone, or with drawn by one partner, it leaves a void and can be a destructive force in breaking up a marriage, unless the partners talk and communicate openly to each other about it.  I know this is nothing new with most all of us with PC issues. But when a spouse, decides that they don't want to be intimate, any more, whether it be, because of causing them pain, or your spouse, doesn't want to do it because he/she doesn't want to cause YOU more pain! Either way that is a decision that should be made together not by just the one spouse! That piled up on top of other issues, can often be the straw that breaks the camels back, and end the marriage, (even after 35 plus years!)  Either way communication is the most important factor in this, talk with each other find out what your spouse feels, his or her, wants, needs, and desires, and let him or her know what yours are, then compromise, and find a way to express your love for each other in a way that will satisfy both your needs, and not just one. It is that IMPORTANT!

White Beard

I am, somewhat, in the same boat as many.

Either the pain puts me out of the mood, I'll be in the mood(with the pain somewhat managed) but I'll over do it(no pun intended lol) or the medication keeps me from reaching the intended destination.

ETA: 24(about to be 25) wife is about to be 29.

I totally understand. Since I'm not able to exercise, I'm almost at the biggest I've ever been and I don't feel as sexy as I once did. If we can get this under control I really want to start exercising. My bf takes excellent care of me and unless I have a kidney stone, sex usually helps me feel better but I know that it probably bothers him that its pretty rushed and done under covers or in a t shirt because I don't want him to see me naked. And I know.men don't feel the same way that we women do about our bodies and clearly he still finds me sexy but I don't find me sexy.

I'm glad you brought this up... There are so few people that I would ever discuss this with or bring up to. Its nice to know I'm not alone but I'm sorry that all of you are going through it too.

I'm 35 and he's 33... So he's a younger man. We went to high school together and we've been together for four years (with a small break during that time) and I am really subconscious about my body right now. :-( On average we make love 3-4 times a week but I won't even step into the room without something that covers most of my body.

(Edited to add our ages and the last paragraph)

Nothing kills the mood more than throwing a hip out in the middle of doing the deed :(

I just wanted to say thank you for starting this thread...I think it's a subject that tends to get skipped over because of the sensitive nature of the material...but I for one have found it really helpful, encouraging, and it's refreshing to be able to talk about it with people who really do understand. So thank you thank you thank you!

hi all

 I can relate to this I was married for 23 yrs and in pain the whole time my wife met me in hospital recovering from my injuries . now im not saying the my pain was the only reason we got divorced but it certainly played a big part in it .having sex was painfull for me and so over time the intimacy dropped away .in the end she left and I was not only shattered cause I was about too lose my house but the stress really effected my pain levels .

I didn't get to see my daughter for 8 yrs  .

but I met a wonderfull lady who just accepts me as I am we have been together 10 yrs now and married july just gone sex still hurts me a lot but we work around it and make it work for us she is 7 yrs younger than me . I suppose as ive gotten older I see things differently than I did when I was younger and sex doesn't mean as much to me as it used to but intimacy does . all it takes is a cuddle or watching a movie together holding hand and feel like your loved  it all helps .

its a touchy subject but im glad someone raised it "no pun intended" your not alone many of us are in the same boat .

cheers dean

Jpjr50,
We are also combating societies ideals as a desirable, sexy woman. We as women need to feel sexy ourselves and our partners can't really deliver that feeling (though it does help a lot). It's one of those things that one we look in the mirror and see ourselves as a hideous bundle of scars, fat ect we implode and we feel awful looking at what we are and remembering what we used to look like.

A lot of medications cause weight gain, our chronic pain inhibits our ability to work out making us feel unable to combat the weight gain. I know as a man you will never understand fully what goes through a woman's mind.

My medications just curb the pain at my L4-L5 and l5s1(bone on bone) if I want to have any relations with my husband I have to double up my Percocet and scrimp else where. I don't want to have to do that but I an still in between pain management doctors so I don't and won't have any true management for a long while and then I well have to have a spinal fusion from l4 all the way to my pelvis. Which will cause a host of new problems. It's not as simple as you make it sound. As much as I would love to have it that easy each of us has a unique host of issues.

I would rather have chronic pain anywhere else besides my lower spine so I could push through the pain and enjoy being intimate with my husband. I know it's slightly easier to be intimate when you don't have a bone on bone at the spot your spine meets the pelvis. My husband also isn't one to cuddle, hold hands, as well as other simple intimate gestures because of all his deployments, ptsd ect.

Please don't make blanket statements. We each are unique. The fact that we are identifying problems here is a step in the right direction. Women need help to identify our problems and then work together to solve them. Most men have a sudden breakthrough idea and they are good.

Anyway I am going to crash (try to)
Morgan

I understand the logic behind the importance of not neglecting your s/o. I really do. But if it's at the expense of hurting yourself, you have nothing left to offer to take care of either of you. It has to be a 2-way street with communication.

Morgan's comment about L5/S1 for example, that area is on of the trigger areas in the spine with a lot of innervation. Just like L4/L5...damage that and you can lose control of your bladder and bowels, perhaps permanently. I love my spouse, but I also don't feel he or I need to be concerned with my having accidents in bed or changing diapers.

We have to protect ourselves first and foremost. If we don't, especially IN LIEU of "taking care" of our spouse, we're both miserable. If it's the end result you're focused on, there's always self-satisfaction.

Hubby has been with me through two hip replacements and my entire lumbar spine fused....if you think for one minute having those surgeries "fixed" me so I can now move about freely, in bed or elsewhere, you're sorely misinformed. I am fortunate to have a spouse who has watched our marriage deteriorate before I bit the bullet to get surgical intervention, and BECAUSE he's watched me TRY, and try to improvise and see me get better and better, even with set backs,....the fact I'm doing SOMETHING means more to him.

We have gone two months without sex after my back surgery. It bothered ME more than it bothered him. He was just happy to have me back (not curled up in balls of pain ignoring my "self" and my family), he said, "Just take care of your SELF,...we'll get there."

And we do. He's healthy as a horse and that bugger, he gets better with age,...and no, I'm not the athlete I was when we met. It eats away at my self esteem. Add in our age difference, and for a woman, that can crumble self-worth.

It's not as simple as mechanics.

Gotta walk a mile in someone else's shoes to "get it."


Merrida

EDIT:  Thank you Peter and Mods for letting this thread develop and evolve.  I think many of us keep this very important issue to ourselves where it can fester.  I appreciate this forum allowing us to share.

Post Edited (Merrida) : 9/4/2013 9:31:00 AM (GMT-6)

That's true. It can happen to anyone... Even you. Even if you think you are doing everything to keep him or her happy she can decide that living with someone in pain is not for her and leave you. I think we all fear that our friends, family and other relationships are going to be at sake when we suffer with our conditions because its taken so much from us already.

I ended up meeting with my PM Dr. and Neurosurgeon and bringing up this subject that does effect us all. I asked them what would actually "harm or damage" me further as opposed to what would possibly just hurt a bit more.

To me, pain can be dealt with and actually the endorphin release counteracts a lot of it for me. But any pain that happens is something totally worth it to me!

I mean, with chronic pain, this is our lives and we can either choose to stay in a protective bubble and never do anything that we love to do anymore, or go out and enjoy life within the boundaries or caring for ourselves physically and not injuring ourselves further.

But even with 3 neck fusions and having active herniations in the lumbar and cervical spine, I would never trade time having sex. I think I was just born with a bit more testosterone than the average female as it's something that I've never put on hold except the few weeks after a fusion...LOL

The other aspect is taking care of our mental and physical health with daily exercise which helps us feel better and also releases endorphins, and then feeding out bodies with healthy food. If we don't do these things then we aren't going to feel like doing much of anything. Feeling listless and sluggish is not going to "get someone in the mood."

My Drs. have said that people can accidentally get into the mode of being scared about harming themselves when having sex so they associate pain=sex so this becomes a self fulfilling prophecy.

It's the same if someone is not feeling good about their body...instead of just trying to focus on the here and now as being sexy is more mental that translates into the physical. Your partner is not focuses on any perceived flaws that you have, they just want to be close to you..

The key is working with your partner and if a position hurts, then try something different. There are many ways to keep ourselves and our partners satisfied and happy and getting creative can be fun for everyone! LOL

I get the endorphin rush too, SB. So many women I know with endo have issues with sex because of increased pain or bleeding after the deed and I'm the exception. I feel no pain during sex, not even the constant nagging pain that I have any other time. If it were up to me, we'd have sex everyday and twice on Sunday but he has a bad knee (from a baskeball enjury) so I have to reign myself in. But I've never considered leaving him because he can't have sex as often as I'd like to. He means the world to me... I have never felt so content just being around a person like I am with him. My soul is happy even when we are just laying next to each other watching TV. But I digress on my mushiness.

We joke that between his knee and my pelvic pain, we are the Special Olympics of love making. LoL