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Post by Heather on Nov 2, 2010 1:17:30 GMT -5
My worst symptom is dyspareunia. Couple that with a lack of libido (whether from Pristiq or something else, I don't know) and we really don't have sex often. My husband has to remind me when he wants it. He doesn't understand that I just don't think about it because I don't crave it. I know he is not trying to be obnoxious or pushy, but sometimes he does annoy me.
Anyway, I wanted to start a thread about ways that we "cope" with not being able to be close to our SO's. This may get touchy--I know that some things I have done are absolutely horrible, and I'm really opening up by telling yall this, because I've never told this to anyone. I've gone through all the stages of loss, I've had my depression relapse in a big way, I've sat up wondering if the reason I get so exhausted after work is because of endo, and trying not to blame more stuff on it than it has already claimed.
Probably the worst thing I have done out of my frustration is the online affairs. Sam and I used to play World of Warcraft--he still does, I quit a year ago. I ended up having quite a few online boyfriends through the game. I guess it made me feel needed, wanted to be able to have sex without pain (cyber). I can't believe I'm even admitting this. I don't even know if I would have stopped, but I had a dream that Sam died in a plane crash right before he was about to go on a business trip.
My dreams come true a lot--usually 2-3 years afterward. I was hysterical. I could barely let go of him when I dropped him at the airport. I didn't tell him about my dream until he got back, because there was really nothing he could do anyway. In the same week, my sister's friend died (and I knew the girl), I ran out of my antidepressant, I broke up with my online boyfriend. It was just a really horrible week, and I spent the whole time Sam was gone worrying about whether or not he would come back. That dream made me realize how horribly lost I would be without him.
Our marriage has suffered a lot because of this damned disease, but we have miraculously managed to get through it. I still have pain with sex, and I don't think we can ever have a normal relationship, but at least now it's a healthy one. I am still very in love with him, and so grateful for everything he does for me. He understands that I have diseases that demand my attention, he takes care of me when I need him to, he takes care of himself when I need him to, and he even takes care of our animals when I'm too sick to do it. He makes the majority of the money in our household (I'm a waitress, he's an engineer), so he takes care of us all financially as well.
So let's hear your story about how endo has effected your sexual and emotional relationships. You can't have done anything worse than what I did, but certainly, if you are embarrassed, you don't have to share.
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Post by JC on Nov 2, 2010 13:12:30 GMT -5
Hey, I'm glad you came out and admitted things that you aren't proud of. Sometimes admitting it makes you feel more accountable for your actions and in turn, help you make better decisions.
The painful sex was my worst symptom too. What was different with my situation is that I have a very high sex drive so the fact that endo slapped me in the face and took away something very special to me, it was extremely depressing. Then to add on top of that, my husband was NOT understanding at all and I would even go as far to say he was down right insulting to me. So not only was my body failing me, but my husband was hurting my feelings in the process. I can not begin to describe how low I felt. I tried and tried and tried to have sex all with the same excruciating pain and the frustration and anger directed at me from my husband. Even when I was afraid of the pain enough to avoid trying to have sex, I would still do my best to please my husband even in the face of more and more anger and insults flung at me. Eventually I begged my husband to go with me to a doctor's appointment in hopes that my doctor could explain to him what this disease is like for me. I remember crying in the doctor's office telling him that this painful sex thing was ruining my marriage. He just held my hand and told me he was sorry and he would do his best to help me. This is when I went onto the nuva ring. The nuva ring has literally saved my ass. I still feel pain in some positions but at least I can do most things again like we used to! In my husband's defense, I know I've painted him out to be this total jerk (which he was), but since then he has made very positive changes to his life and addressed some of the anger problems he has. We have been in marriage counseling for some time now and it has helped tremendously. I still feel the need to address the way he treated me back when I was at my worst, but since we have had way more pressing issues to work through, it hasn't come up yet.
So I can understand the online relationship flings you've had in the sense that you feel so isolated and unloved when you can't be intimate with your spouse. I can see how this could fill that empty void. It's a terribly lonely and horrible feeling. I guess the only way to fully resolve this the "right" way is to have your husband understand how this is. If he can't be understanding then this situation will never get better. At least, that's how I feel. How would he feel if suddenly he was stuck with erectile dysfunction and you were not very understanding about it? Would he feel "loved?" Understood? Cared for? Intimate? um, no. It's no different for us. It's humilating, it's embarrassing, it's frustrating, and it's depressing. He NEEDS to know how this feels. Maybe if you put it to him like that it will help? It didn't help me by telling my husband this, but maybe it will help you in your situation?
I can't begin to tell you how much this issue speaks to me because this was, by far, the main issue I've had with this disease.
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Post by hellsbells on Nov 2, 2010 16:51:48 GMT -5
Hiya, thankyou for sharing! I'm a very non-judgemental person, so don't worry about anything, we're all pretty open and open minded around here! One thing I would say though, is I've been caught up in many affairs, some started online/text etc and the can lead somewhere, so just be careful in that respect. Sounds like you wouldn't really bu up for that anyway! Jenaya has said everything else I would say. Have you asked him how he's feeling? It might be a way to open up a conversation without putting him on the defensive. Good luck honey xx
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Post by Rulena on Nov 2, 2010 20:43:10 GMT -5
Wow I totally feel the same way and face the same issues with my husband. Although he is very understanding, it just seems like he really, truly does not understand. Otherwise, he wouldn't continue to ask me if I don't like sex or am not attracted to him. It's hard to have a sex drive when you know that sex is going to be so freaking painful. I would SO love to go back to the days when this was not an issue. If only life was so easy...
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Post by Karen on Nov 2, 2010 20:51:55 GMT -5
Well, in my case, I had some pain after sex (though not bad) before I even knew about endo. It was more of a heavy dull pain/spasms the day or two after, could never figure it out. When the daily pain got to be really bad, I was single and didn't want to even THINK about someone getting near me, and I was so miserable at the time that it would have been absolutely impossible to date. I had a few romps with a few men once I started feeling a bit better, but never would let things go too far, always found a reason to stop before actual penetration. I knew I needed to get over the hump so to speak, but was terrified. It wasn't until I went to pelvic PT that I started thinking I could try having sex again. Even though my treatment is done for now, she still approved 2 more sessions for me to get in if I find sex is painful, so it's nice to know I can go in and get a bit more work done if there are still some trouble spots. Funny thing - even SHE was telling me I needed to have sex! Ha ha ha. My dry spell lasted 25 months. Yup, over two years... Anyway, I finally got over the hump. It involved very large quantities of booze and a very frisky partner with a short recovery time. Ha! Not ideal but... Not only did I try many many positions, but I broke a personal record! Had some pelvic throbbing (not the good kind) afterward and some tenderness at my cervix for a few days, but nothing excruciating. It's funny, but that experience now makes me a bit more comfortable to seek out a real relationship. I've dated here and there, and I wanted to date, but I felt like I was stuck when it came to sex. I just wasn't sure how it would go, and I didn't want to meet someone great and then find out that sex sucked. But now I feel a bit more confident about dating, like I'm more comfortable with myself. I'm still nervous that sex will suck at some point, or I'll spot at an inopportune time, but at least I have a baseline of what it can be like when my endo is being managed and that's not so scary anymore. I tried telling a potential new gyn (she was awful, never saw her again) that the pain I was in was making me avoid sex and she could have cared less. It's a part of endo that a lot of people don't know how to address. And that just sucks!
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Post by pretty on Nov 2, 2010 22:16:05 GMT -5
I love this thread. What a great idea. Me and my husband have other more pressing issues in this same vein, and it's been like a secondary issue due to the others.... I will say that before I knew about the endo, we didn't have the active sex life that I wanted, more due to my husband's health issues than my own; he has a broken back and swears it has not just affected his libido but feels he has some sort of erectile issue as well. He also swears to a completely horny youth and has told me about 3 abortions (with a past girlfriend). Its as if he wants to prove his past virility...sweet. anyhow, I have made great strides in learning to be close to this man over the last two years, as like many women I have measured my worth as a woman by my sexual powers over and with men, and I've never had a relationship until this one that wasn't based in some way on my sexual being or my sexual persona if that makes sense. there's always been this underlying 'understanding' that I was a sexy, sexy thang and that he (whoever I was with) wanted me bad. So it's been really challenging for me to re-define myself with a man who really does love me for my 'outside' persona not my 'sex kitten' bedroom persona.... yeah. I've done a lot of changing. My husband is very deep seeming to me. I feel somewhat shallow around him at times. I feel very often that I'm putting on a show and that he would prefer me to be 'real' and more honest and less 'thinky'. I think this is part of my very deep attraction to this man. He is a young man dealing with what to him is an old man's body that doesn't respond like he wants. I have also had a LOT of issues with my own body perceptions of myself and since puberty, I've had a lot of trouble staying 'with' my body or even 'in' my body. I even have felt that endo was my wake-up call from my body, saying HEY IM RIGHT HERE, FEEL ME! We have now got a level of intimacy that I am very comfortable with. I have recently begun offering him a lot more non-sex sex; oral sex, etc, and we are getting somewhere. He is not under pressure to please me (we have a few months off, per doctors orders) or bring me to orgasm, and he's finally able to 'direct' me to please him more. I'm really liking that. He and I are both sort of usually very non-verbal when we are physical and I am loving the sound of his voice when he tells me how to do it.... I'm also now getting better at telling him the things I love about him without needing him to reciprocate in kind. I would say we are more intimate and closer than we were when 1) we had just got married and trying to have a baby or 2) when sex was less painful for me and I was pushing for it to 'regain' or find some kind of power there, like I did before marriage. All in all, strange as it seems, discovering my infertility took the pressure off us as a couple to conceive and I think opened the door to intimacy and friendship in a different way. Of course I am an incurable optimist and would find a silver lining in a pot of sh!t.... but yeah. I know what you have shared is a big deal and just wanted to give y'all some props for that....
It's really true that when dealing with physical afflictions, there are experiences and feelings and 'past sh!t' that come up that MUST be processed and picked apart so that healing can occur. Big applause here. awesome thread. thanks.
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Post by JC on Nov 3, 2010 6:10:44 GMT -5
Pretty, how wonderful for you to be so understanding and try different things. I wish that men would treat us like this but for some reason, sexual dysfunction for women isn't taken seriously. Karen when you said that a lot of people don't know how to address this issue, it's so true. It's extremely frustrating that the world comes to a man's aid for his sexual problems but a woman basically get told that nobody cares. I'm so sick of it.
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Post by pretty on Nov 3, 2010 12:01:04 GMT -5
I'm not always understanding in fact often I'm a horrible bitch. Yesterday was a clear day but today..... we'll see. God all this trouble. It can really wear you down. Hang in there everyone!
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Post by Tara on Nov 3, 2010 16:00:55 GMT -5
Thanks for starting this thread, I was wondering about an anti-horny thread for this very thing. I have no sex drive to speak of, it doesn`t ever cross my mind, and my husband has always left it up to me to initiate it, so now we really don`t have alot of sex, maybe if lucky once a month. It hurts during sex, as well as I have abdominal pain all of the next day. But my husband has found another outlet for his time, he goes to the casino. So as long as he sticks to the rules of his going out, then I at least don`t feel guilty anymore. I do worry what the long time ramifications will be for not providing sex anymore. I have spoken with my husband in regards to him having to ask for it since it doesn`t enter my mind, but he doesn`t feel comfortable asking for it, even though in all of our 17 years together (9 married) I have never turned him down. As for what I have done to avoid the issue, it is nothing because it never enters my mind that I am missing something, so we just don`t do it.
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Post by Karen on Nov 3, 2010 17:58:36 GMT -5
It's really true that when dealing with physical afflictions, there are experiences and feelings and 'past sh!t' that come up that MUST be processed and picked apart so that healing can occur. VERY good point, I completely agree. I know it was mentioned in another thread, but to me, it kind of seemed like endo was my punishment. I grew up with a very strict mother with very specific views on sex (she told me she didn't enjoy it, didn't understand what the big deal was, that if I were to have sex out of wedlock she hoped I'd get pregnant so I understood the consequences of it, etc.) that really scarred me for a long time. So, by the time I had my first encounter, it was not a good experience AT ALL (blacked out, vomiting, I'm quite convinced I was drugged as I've NEVER blacked out before or since) and I still to this day struggle with calling it date rape, though it fits the description to a T. So then I dealt with that by screwing enough a$$holes in an attempt to try to get some control over that experience, and trying to shake my mom's views that she tried so hard to instill in me. I thought I did a pretty good job of f*cking all that out of my system, and then endo reared it's ugly head. Honestly, for me, it brought alllll that stuff back up, and was likely part of the reason I stayed away from the penis for so long! It was just too much to deal with, it felt like punishment. I feel like it's just ONE more thing to add to my shameful sex experiences, you know? But, I'm making headway. My sex drive is coming back after many years of barely being on the radar (thanks to testosterone cream - and though I'm single I'm still taking it so I don't lose my motivation to find me some lovin'!). I'm working through the other stuff in therapy, and doing my best to feel sexy with the body I have these days. It's better than last year, but not as good as years prior. Body image and attractiveness all plays in there, too! So, yes, good thread! I think we all have a lot that could stand to be picked apart so we can process it all and set it aside once and for all. Not easy at all, but if each of us make even a little bit of headway, imagine how much happier we'd be if we'd all be shagged properly with little to no pain?
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Post by katlit on Nov 15, 2010 22:09:40 GMT -5
I was just about to make a new thread about this topic but i saw this and i was gald that I'm not alone. I planned a romatic weekend away with my man and we ended up arguring all the time because he wanted sex and i wanted to wait before bed because after sex, sometimes i can't even sit down. hes been so great through this. I think its just catching up with us. he wants it all the time but the factor of me being in so much pain means i don't want it. I feel so guilty that hes missing out on things and i'm real scared hes going to cheat because why would he want to stay with me if we can't do things every normal couple do. as everyone has said, its not just the phyiscal pain either, everytime we have sex, i feel worse because i'm so sore, i feel guilty and i dont feel like a girl! does any1 have any advice or can help because i don't know what to do? i don't want to lose my relationship with my man but i think it could go that far.
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Post by hellsbells on Nov 16, 2010 12:59:55 GMT -5
Fun lubricants, mouths and fingers. Maybe forget about penetration for a while and go for some good old foreplay? But plenty of it!
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Post by Karen on Nov 16, 2010 13:05:19 GMT -5
There's a whole thread on ways around pain & sex! Lots of ideas. I think it's a sticky thread in the pain & advice area.
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Post by pretty on Nov 16, 2010 16:55:25 GMT -5
this is rough. I myself think about it all the time. I don't want the spark to go out of my marriage. Yes men love sex. I have started just getting next to my man a lot more, touching him, checking in with him. He seems to like it, but it's so not me (not close and clingy type) that it's throwing him off a bit.... so far we've been wait and see-ing if the endo pain is better after my recent surgery. I think it's just one of those side effects of endo that are horrible but don't get a lot of public attention because frankly the daily pain of endo is so horrific, that sex and painful sex kind of seem.... trivial? when you are looking at so much pain NOT brought on by sex.... I'll stop here because it's the wrong thread, but please post if you find anything at all that helps you be intimate... good luck. P
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Post by cherry on Nov 16, 2010 17:00:21 GMT -5
I see where you're coming from with the sex pain being so secondary, but I also think it's so emotionally painful for us to confront and talk about, and sex, the actual details, are still so touchy to discuss in day to day life too... it's horribly isolating to have to cope with. I can be grateful in one way that I'm not having sex atm so I don't have to worry about this. I think this worries me more than infertility. I am open to adoption, surrogacy, hell 12 months ago fostering kids was my big dream. But with sex, and lacking that because it hurts too much. I don't know what I would do. It honestly terrifies me.
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