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Post by KSA on Aug 31, 2011 19:59:17 GMT -5
I have been apprehensive to share that I am afraid of sex. Pelvic exams hurt so bad and I do not consider by life as a sex object anymore. NO libido at all. I hope this is not tmi but I feel nothing when it comes to sex and I used to flirt all the time with my husband and everyone harmless flirting now I am just blah. The pain turns me off. I don't even miss it is the worst part.
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Post by Karen on Aug 31, 2011 22:02:04 GMT -5
Aw, Keri, I'm so sorry you feel like you lost that part of you! I know there's a little vixen in there just waiting for the rest of your body to heal. I know the fear of sex all too well and it sucks.
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Post by Heather on Sept 1, 2011 2:00:40 GMT -5
Trust me, I know how that is. I haven't said anything to Sam about it, but for a couple months now I feel unable to enjoy myself. Even when I orgasm it's like the volume's turned down. I don't want it, have no libido, and even if it doesn't hurt I don't actually enjoy it. I just do it. I've been off of all synthetic drugs for a few months now, so it's gotta be long term side effects from Lupron.
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Post by JC on Sept 1, 2011 18:36:53 GMT -5
I'm sorry girls. That's really awful.
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Post by deborah1 on Feb 3, 2013 10:14:34 GMT -5
Six years ago, before I was diagnosed with endo, my sex life was going to hell. My husband and I had always had a great connection there, and at first, I didn't know why I was hurting every damn time! I started to pull away, tell him I was too tired, pretend to be asleep, wait till he was asleep before going to bed, etc. he has always had a very high libido, very high, and couldn't understand why I was pulling away. He was hurt, thought I was cheating, and we started to fight all the time. I thougt he was just being an ass, but it was only recently that he told me how hurt and scared he was at that time. He didn't know how to deal with it, and neither did I. I would give in just to shut him up, and be in pain for days afterward. It got to the point that I didn't want any physical contact because I was always scared he would want more. We went through some really bad days. Doesn't help that when something bothers me, I clam up and stew. Thank god for me, it got a little better in the sense that sometimes, it didn't hurt so bad. After I was diagnosed, he understood a little better and was very patient. After each lap, ( i had four), we would have a period of time that we both enjoyed it again. We found that certain positions were worse than others, and I learned to tell him when to go slow or speed up,lol. After showing him a video of what endo does, he became even more patient. All I had to say was I was flaring and he would just hug me. Now, I have another lap scheduled. But was the hardest for me was becoming more verbal with him. Not whining about my pain all the time, but just a word or two on my good and bad days to give him an idea of how I was feeling. He has become VERY good at foreplay to get me warmed up which helps immensely, and I learned to open my mouth. Bj's and hj's are sometimes a good back up, because one thing I've learned is to recognize his needs too. I actually tried to picture our life if he was always sick and how I would feel to always be shot down when I was feeling frisky. I took it for granted that whenever I wanted it, he would oblige. I don't know if I would have been as patient as he was....
I still have good and bad days. But we are coming upon our tenth wedding anniversary and i have learned a few things.
1. Compromise 2. Try to put myself in his place sometimes 3. Don't ever stop hugging and kissing 4. Compromise,lol 5. Get as much sex as possible on your good days! 6. Cuddle on the bad ones 7. Open up with eachother. 8. Appreciate
It is really hard sometimes. The stress this disease causes me and my loved ones is infuriating! But I can't imagine doing this alone and my heart goes out to those women that feel alone.
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Post by butterfly80 on Feb 5, 2013 15:41:42 GMT -5
wow ladies thank you all for sharing here. although I am very hesitent to post here on this I am going to as I too would like to share and be open as finally once again feel not alone in this pain. I am not currently seeing anyone (which can make avoiding sex easier). The last guy i was with, just before Christmas, was all about trying numerous sex positions.. I swear in one night i had more sex positions with him than i ever experienced overall lol. Would have been great if i was not in so much pain. Our relationship, if that is what you would even call it, was only about sex. He was not a guy who was about forplay, sure he gave a little but he was quick to just want to get inside me. The sex hurts A LOT, i also have been told by my family Dr that i have a very low cervix so for years thought it was that that was making sex hurt, but that didn't explain why i hurt for days after or hurt even if i was with someone and we just fooled around without sex. On occassion I was lucky enough to not have a condom and would opt out of the sex, however there was also times when i still gave in as I always felt it is my duty to give sex as that is what I am suppoe to do I know the difference of that though really i do but have had sex on times when i did not want it just as felt i had to. So not only can i not enjoy sex anymore i can not enjoy just same good ol' fun either as i still get horrible pain. I have been pushing men away for a long time and would only be involved in sex and then move on, you know one night stands but now i find i am even pushing that away and avoding that as sex should be fun not painful. I remember when i did enjoy it, long ago. But not anymore. The pushing men away was related to other reasons though...But Now that i am working on that and being so open to re-introducing men into my life and being sexually active again I an hit with PAIN(went nearly three years without being involved with anyone sexually in any way what so ever) . And this pain has been going on for sometime now..very long as i look back on it. I use to think it was maybe becasue of positioning or my low cervix or if i never orgasmed so didnt release or if i did orgasam figured it was becasue my body contracted or the guy was big or he was rough or went too deep,..and i never talked about this with anyone as was too embarassed. But as i look back this pain has been with me longer than i realize.. I use to love oral sex, loved reciving more than giving though lol, but even that i end up in pain now for days after. Again good I am single as i can avoid sex and being intimate/touched but at the same time i want to have fun . But if i begin to flirt with a guy my mind immediatley goes to the pain of being "with" him and then I just avoid avoid avoid. Hope sharing all this was ok....now to see if i have the courage in me to hit "post reply"...... *had to make an edit....sorry...hope that is ok!
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Post by Heather on Feb 6, 2013 22:19:19 GMT -5
omg you guys, I can't believe my little pouring-my-heart-out confession thread is still going strong! It brings a tear to my eyes.
Deborah, thank you so much for sharing what you have learned. I have to admit, I have never tried to put myself in his shoes. I am so bad at that. You make a good point though.
Butterfly, please don't feel awkward! I know that's easier said than done. All of us feel a little weird when we first start to talk openly about sex. Even me (and I've made an endo blog which my mom and other family members read, eep!). It can help so much though, when you finally decide to relate experiences with other women who are going through the same thing as you.
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Post by butterfly80 on Feb 7, 2013 6:04:30 GMT -5
You started a great thread here Indeed!! I still feel a little uneasy about sharing such personal detail but felt honestly I needed to do it. I debated deleting the post but didn't feel right doing that either. Talking openly about the pain and personal struggle of sex is hard as it is much easier to talk about sex with people when their is enjoyment in it. I have told a couple friends that sex hurts is a symptom I have but leave it at that. And do not divulge further. I have mentioned more to my Dr and know when isee the gyn I will definitely tell her the pain I feel with the sex, orgasm, being touched, etc. it all triggers a pain response that lay for days at a higher than regular level. I say regular as pain is always there on some level but then there are days the pain level increases. so thanks for this blog !! I feel much better after sharing even after reading your response. I just wish I could go back to sex being good and touch being good. But as I said at least I am single so am able to avoid it more than others who are in a relationship especially married...hang in there, I would think understanding would be key to struggling with this in a relationship P.S. Deborah those 8 things you listed are great
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brtb
New Member
Posts: 23
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Post by brtb on Feb 25, 2013 10:38:04 GMT -5
I'm so glad I found this thread. I had a lap one year ago (Stage IV endo, fused organs, endometriomas, etc). Overall, I feel great. However, within the last month I'm getting pain during sex, along with some other rawness and irritation.
I feel like DH doesn't get it. He nags me for sex. We have sex multiple times week (sometimes more than once a day). I suck it up and do whatever to shut him up. I'm really getting annoyed that he nags me and it makes me want it even less, which makes the pain worse.
I really don't know how to cope. We've been married for 15 years, I'm 36, no kids. Back in the day we used to go at it like rabbits, but I just don't have the desire.
I don't know how to deal with him.
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Post by charlie29 on Feb 25, 2013 17:51:58 GMT -5
BRTB: In reading your post, I completely relate but moreso with my ex. I was dry all the time and it hurt and I just couldnt do it anymore. Avoidance was my best friend. What I have learned though is communication is SO IMPORTANT. He doesnt know how you are feeling or why you may withdraw from him unless you tell him. He needs to know about the pain and he needs to be openminded in understanding the disease. Also, that it's not an excuse that you are using to not have sex. It is your reality..
How much does he know about the disease? How it impacts you daily? He may just need to be told that this disease causes pain during sex and for some time afterwards.
Deborah: Your post nearly made me cry in reading your 8 things to remember.
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Post by nibletz on Mar 2, 2013 15:48:06 GMT -5
ive always been hesitant to post on the sex subject just feel embarrased and shy and stupid....but i wanna thank you all for sharing and its helped me feel more relaxed about it and i realise others go through it too even though i thuoght maybe some did its easier when shared....
me and hubby have this issue i go through times i want it so much but scared as it hurts and he not always into foreplay and i need to be fully aroused and 'wet' and sometimes he goes in and done before am pleased which sounds mad but hurts my entire vaginal area....i love sex and love with hubby however i know he cant always do it how we love as it hurts and sometimes he has to stop as i end up crying coz of pain and dont show him as feel bad and want him to enjoy it ill be honest i love pleasing him orally and he knows it lol and i do compromise if i cant have sex coz of pains or moods or tiredness i please him other ways but i just feel guilty sometimes like i wish i could do more and be normal and i have sometimes took tramacet plus oramorph so we can 'enjoy' each other.....
good thing is he knows about endo and fibro too so does get it but gets frustrated too which i understand
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Post by botino on Oct 19, 2013 10:59:17 GMT -5
I was diagnosed this summer with endo. Me and my boyfriend have been together for about a year and we really love each other. The past couple of months i was in pain during sex and we had to stop a few times. And now i am on visanne, i have a light period constantly, no major pain, but we still can't have sex due to the blood. He is being very very supportive, he says that he doesn't mind and he never pushed me to have sex. But i feel so guilty. When we met i didn't have endo, and now sometimes i'm thinking of just breaking up so that he can have a normal life. I feel terrible....
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Post by omaklackey on Oct 19, 2013 12:57:45 GMT -5
I just want to bring in one comment on this... Last year when I went back to Mosbrucker one of my biggest complaints was the sex. Turns out it had EVERYTHING to do with my hormones. She said the vaginal vault had atrophied. It made sex so painful and no amount of lubrication seemed to help. I briefly had my hormones really level when I went on a bioidentical combo patch (estrogen and progesterone) but I developed an allergy to the adhesive (stupid stuff doesn't come off without major scrubbing which makes my skin very angry). So now my hormones are all out of whack again (no ovaries) and I can't get my new HRT's to a level that's doing anything for me so sex has become very painful again. It made me wonder... how many of us that are having issues with painful sex have hormone issues? Ovaries that aren't working right because of cysts, birth control pills, etc. Its something to wonder about. I initially thought the pain was caused by endo in the cul de sac area but when I fixed my hormones the pain went away unless the hubby went super deep. I hope I get it sorted out again soon. I had libido and no pain. It was awfully nice while it lasted.
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