Sex & Endometriosis: 4 Quotes That Will Teach You Everything Women Go Through

sex and endometriosis

Sex and endometriosis.

Honestly, I hadn’t thought of it because my wife (founder, Shawnda McNeal) has always been quiet about it. Plus, throughout our 13 years together, I’ve always tried to let her take the lead on the whole sex thing. I just never felt right nudging her into it in any scenario.

But, there I was combing the comments of an article I wrote called 4 Huge Mistakes I Made During My Wife’s Endo Battle and I saw the comment.

“…this is great, but I wish he would’ve tackled the elephant in the room…SEX…”

Interesting.

The sex issue in question wasn’t necessarily one of my mistakes.

Or so I thought. Turns out, it totally was.

Mistaken in that I had been massively out of tune with my wife and totally missed some of her advances. I hadn’t noticed those moments when she had mustered up all her strength, mentally and physically, and readied herself to connect with me. 

And I’m not speaking for all men, but for me – being out of tune with my wife was the overarching issue in many areas of our life. Not just with endo.

With that, I polled our Facebook page to find out what women wanted us all to know about sex and endometriosis. Read below and please share, share, share. These women were extremely brave to share this. Let’s make sure all the eyes in the world get to see it.

Sex and Endometriosis: 4 Quotes To Teach You Everything

I’ll take you through four real quotes from real women that I pulled from our Facebook page. Each one gave me permission to re-publish. I’ve done my best to summarize the central point of each, while also providing some explanation for the partners of the world.

Oh, and bonus – if you have Pinterest pages, feel free to pin those quotes, k?

Feeling Left Like A Failure

pain during sex

Carly was one of the first responses. Her full comment is directly below. She does a great job summing up the overarching feeling of sex and endometriosis. Most women want sex just as much as any of us…the fact that the pleasure from sex is replaced by pain often times leaves women feeling like a failure.

We’ll get more into the pain below, but do not focus on that for now. In the quote below, focus on what she is feeling.

Carly’s full quote:

Endometriosis and Sex don’t go together. You’re left feeling like a failure when all you want to do is have sex but your body is fighting a war inside. Tears stream down your face as you try to pretend that is doesn’t hurt. Being able to feel good having sex is what makes me feel like a woman. Having that pleasure taken away and replaced with pain is a feeling that can’t quite be put into words.

The Rejection Hurts More Than The Endo

endometriosis sex pain rejection

As a man supporting a woman with endometriosis, this one threw me completely for a loop. “What are we supposed to do then?” I thought.

So, I asked Shawnda if she’s experienced this with me and without hesitation she answered “YES…”

“What do I do then?” I asked.

“If I’m making the effort to have sex with you…then do it…It means I’m at a point mentally where I’d rather deal with the pain and connect with my husband.” she said.

That’s when I learned that I had indeed missed the bus on this one.

Tresa’s full quote below:

“You were in a lot of pain today. I don’t think it’s a good idea.” I hear this a lot. I know he doesn’t want me to hurt any more and he’s just trying to take care of me but the rejection almost hurts more than the endo.”

She Feels Absolutely Worthless

endometriosis-sex-pain-feelings

As men, what I think most of us don’t realize is that women, they really love sex too.

For different reasons maybe, but they do.

What Marisol is saying here is that she absolutely wants more than anything to have sex with her husband, but with the pressure of trying to conceive, the pain, the bloated belly, the scars – she doesn’t feel sexy.

And it’s frustrating, because she wants more than anything to feel sexy.

Speaking for the guys here, we typically don’t understand the feeling sexy part. We don’t need to feel sexy for sexy time.

For our ladies though, it’s all about the feels. It’s so much about the feels that, like I illustrated above, sometimes she’ll opt to have sex with us just because she wants to feel closer to us.

But, when she doesn’t feel sexy. That changes everything.

Her full quote below:

“It’s an emotional roller coaster indeed with Endometriosis & sex. As a wife i feel so worthless at times when I’m in pain and can’t give my husband attention he deserves. I don’t feel sexy enough for him with my bloated belly and surgery scars. In addition, trying to conceived for last 3 yrs doesn’t help when you are in pain only adding more stress. It’s frustrating go be intimate and sexy with your loved ine when you feel fatigued & in pain”

Sex With Endometriosis Feels Like Being Stabbed

endometriosis pain during sex

Then, there’s that pain. I didn’t lead off with the pain, because the point I wanted to make with this article is that this issue is SO multi-dimensional. It’s not just about the pain.

But, the pain is real and it is terrible. We shouldn’t ever forget about the pain.

I picked out the comment below because the imagery, you just can’t shake it. To a lot of the women we’ve heard from, having sex with endometriosis feeling like being stabbed and the pain can stay with you for days.

Demara’s full quote below:

“To blatantly put it, SEX feels like you are being stabbed with a knife. Just like a stab wound, the pain doesn’t just go away. The pain can stay with you for days and you feel completely scarred. Something that is suppose to bring you pleasure brings you unbearable pain. You feel like less of a women as you battle with yourself. You want to be intimate with the one you love, but your mind tells you NO”

As Men, What Do We Do?

Honestly, I’m still a little lost with it. I think I get it – I’m trying to get it.

On one hand, you know she’s in so much pain, that when you feel her advances towards you, you just can’t imagine having sex and putting her through more pain.

So, you say “It’s alright, honey…”

Then, she feels rejected.

Double fail. What can you do?

Fine Tune Your Intuition and Communicate

I think the answer is, you have to continue to fine-tune your feeling and intuition to become as one with her as you possibly can. As husbands and partners, we should be doing this anyway – but it is especially important now.

And look, it doesn’t have to be a guessing game either. I’m not saying you have to be all Captain Psychic Pants.

If you feel confused, flat out ask her, “Are you sure you want to do this? I want to more than anything, but I don’t want to hurt you.”

If she really does, she’ll tell you.

And if she DOES tell you, it means she’s waged the war in her head and she’s ready. Go with it and revel in the moment of connecting with your partner.

Do You Have Any Advice on Sex and Endometriosis? As a man or partner in a relationship, maybe you have something to say too? 

If so, please leave a comment. The goal is to get us all talking about this…outloud, together.

Top image: denisdenis, flickr cc

Comments

  1. Jessica D says

    Endo and sex dating chapter. I’ve had endo my entire adult life developing symptoms in early puberty like many others. I didn’t know that the guy I was with those first few years of being sexually active was actually making things so much worse because of blaming me for the pain. It wasn’t until I had a caring & empathic partner I realized that even with endo, at that stage, sex could be enjoyable. That was a long time ago and my endo advanced so much so that any sexual activity is beyond painful now. Worst yet I’m single and have been for several years, because of endo. I am trying the dating scene again now and trying to change my opinions on my self worth as a mate. It is just hard because intimacy and sex had always been integrated into part of what I think of as a healthy relationship and if I can’t then I feel like I’m damaged, like I’m not going to find that loving relationship.

    • says

      Such a struggle, Jessica, thanks for sharing that.

      We’re all working together to figure this out…I’ve no doubt we’ll all get there one day. Please, stay in touch and let us know if you ever need an ear or want to share your story for others.

  2. Jody says

    As a husband it has been really hard on me as well. I feel rejected. I know it’s not her fault that sex is painful. It’s just hardbebecause our relationship is suffering because of it. It’s been five years since we’ve had sex. That alone has put a strain on things. It’s not just about the sex though. We barely make contact any more because I always manage to touch her were she hurts. Then that just separates us more. We find ourselves sitting on opposite sides of the couch which feels like opposite sides of the world. She has had surgery twice but the endometriosis came back with a vengeance. We were trying to have a child when we found out she had endo from the fertility doctor. That was the same doctor that preformed the two surgeries. She found a specialist in Atlanta. Now she’s going to have a hysterectomy. Hopefully that’ll fix this pain that is constantly eating at her every minute of every day. Maybe we can pick up the pieces afterwardspick up the pieces afterwards. I’m still standing by her for what it’s worth. I don’t really know how to reach out to her without making it look like I’m being insensitive.

    • says

      Thanks for sharing that, Jody. That is the exact dilemma I was trying to refer to a the end of the article there.

      Even though I say that I “think” the answer is in refining our intuition and being more open about our feelings, I KNOW first-hand that it ain’t that easy at all.

      For us, the hysterectomy did help relieve enough of the pain that we’ve been able to start getting back together again…even though it isn’t a cure, it’s definitely been an improvement.

      Would love to share perspective from the partner’s sometime if you’d be willing to allow me to republish your comment in an article…I think it’s really important to get both sides talking.

      Thanks a million for sharing. Don’t hesitate to reach out if you need an ear: dave [at] braave [dot] org

  3. kristen says

    getting my hormones balanced (finally, I’m in year 34 with my battle) has made a world of difference. The orgasm endorphins make the initial pain worth it now. I highly recommend chaste supplements. I was taking two a day which stopped my periods and 95 percent of my symptoms. I am stage IV, have had 8 surgeries including a re-sectioning of my bowels and blessed with in vitro twins. giving birth put my symptoms into remission for about 5 years (gradually intensifying) My twins are 20 now and my symptoms were full blown. I finally went to an alternative doctor. Using this supplement has done more for me than allllll the narcotics, surgeries, birth control pills, false menopause etc.
    I am cutting back to one a day starting today to see if i feel just as good…http://wholehealthchicago.com/464/chasteberry/
    I wish someone had told me about this years ago

  4. Roger says

    Wow it’s so nice to here a man talking about what a lot if other men are thinking. Very interesting reading and a lot of it is bang on
    Roger

  5. Ashley says

    Something that wasn’t mentioned that should also be address is the fact of position. From personal experience be prepared to do the same thing most of the time. When I and some of my friends find a way that is less painful we run with that. And by less pain I mean it still hurts but maybe not as bad as ska different position would. That is hard for some to understand.

  6. Sallie says

    painful sex is one of the cardinal symptoms of endometriosis. However, it is treatable. Excision surgery combined with pelvic physical therapy can help. Using the pelvic PT to mobilize the soft tissue, fascia and muscles can make sex go from painful to enjoyable.

  7. G?Lay says

    My husband is so in tune with me if I am in pain and he knows we cuddle in bed sometimes just holding each other and knowing his there is enough for both of us and on the days when I want too regardless of the time be it 2am as soon as I have a handle on my pain and despite my bloated belly and scars I still dress up for him but more for me as I wont allow endo to take away my feminism and I still light candles , wear perfume so that I feel sexy and I will gently wake him up and we get intimate. If penetration hurts he will finish me off with his mouth and I will do to him likewise or use my hands. I use bioidentical hormones and natural herbs and alternative meds to handle my pain. I have had 11 operations to date.

  8. Chris says

    I’m dating a woman with endo. I struggle with committing fully to her because I’m fraught with worry. I worry that I cause her pain. I worry that we won’t be able to have kids, and about all the time, money, and heartache that could be spent trying and failing. I worry that any kids we did have would have the same condition. I worry that we won’t be able to experience many of the things we want to because she won’t be able. I worry that this will eat at her and worsen her already present depression. Most of all I worry that I would end up resenting her, this woman who completes me so well, simply because of a condition she can’t do anything about. Then I feel guilt. Guilt for being so selfish as to actually be annoyed or irritated with her when she can no longer mask her symptoms and finally lashes out in pain, shame, and helplessness. Guilt for my insensitive remarks when her suffering mildly inconveniences me and I’m too weak to have patience with her. Guilt for the fact that she can’t feel comfortable venting to me because I’ve become tired of hearing it. And worst of all, guilt for even considering leaving her over this. For wanting to bail on her because I don’t know if I’m strong enough to support her. I’m ashamed. I consider myself a good man, a loyal man, and I feel terrible just for thinking these things. I know what it is to experience a broken heart, and I can’t do that to her. To us. Not over this. Yet these doubts remain. I don’t know what to do. I’m stuck between love and comfort, between loyalty and cowardice. Thanks for listening.

    • says

      Chris…that was amazing. I could not have put it better myself…THANK YOU for sharing that, someone like me is going to read that and feel not so alone. There is a ton of value in that. Hang in there, bub. Reach out to me if you ever need an ear.

  9. Celeste says

    I was diagnosed in 2007 and when I look back now I realize a lot of my past relationships failed due to sex, well the lack there of. And as Chris states in his article, yes women love sex too. I love it, but those days, weeks, months, when the pain is too much – I loath it. And I think that creates a lot of confusion for the man that I am with during that time. And my relationships thus fail. Couples need more support to help them understand, talk, and deal with this disease together. We tend to lose communication when it comes to our sex lives.

    We never discuss sex, at great deal, as something that endometrosis really effects. And I am so happy to have found this piece. I always talked about my other issues (bloating, pain, fatigue, mental health) but hid my sex life distress. However, after reading this, I have decided to stop hiding it – so thank you, Dave.

    Also, I think we (women) tend to forget that endo also effect the men in our lives. After reading Chris’s comment, I don’t know if I ever really considered what the man in my life must be dealing with too. So thank you Chris for shining some light – it was so honest and hit home.

    • says

      Celeste, that pretty much settles it for me. I was thinking of doing a follow up with some quotes from men/partners…so the ladies could get a peak into their minds too.

      Most of us doing speak up out of guilt…but two-way communication is so crucial.

      Thank you for taking the time to share and please stay in touch, ok?

      • Celeste says

        Dave, I think that would be such a great idea. Maybe even ask the guys how was it brought to their attention? My biggest anxiety in dating, is the “what if it gets serious – so how do I tell him” conversation I have repeatedly with myself. I worry no guy will want to take the time if he knew I was fighting a battle and at times, kinda broken. Any insight from the men on how they found out, best approach, would be a nice peak inside their minds.

        And trust me, I will stay in touch.

        • DD says

          I am Chris’ girlfriend. I let him know the third night we were just talking. It was one of those conversations where as adults we just laid it all out there. He is the most amazing man I could be with. We share the worries. I have been in relationships before him where the guys said they were ok with my endo, but I knew otherwise. We have talked about these worries and feelings before. I tend to over express my feelings or hold everything in till he goes to sleep then lose control of my emotions and let myself feel all the pain. There is no inbetween. The depression is strong at times and other times a silent battle I keep to myself till I break. I know the strain this has on our relationship so I try my hardest on bad days to still do couple things and go out and be social for him and myself. Compromise I guess is the best word. I am glad he shared with you guys. I have never been prouder of someone. Sharing feelings is hard. Especially worries and doubts. I see now how much he cares and it brought me to happy tears.

  10. Dawn says

    Thank you for this article and for being such a caring and understanding partner to your wife! As someone who is in my second marriage, I can say without a doubt that that caring and understanding go a LONG way in helping women through the pain and ensuing mental block. I used to feel like a failure in that department in my previous marriage. There was always so much pressure on me to keep up with the supposed “normal” amount of activity and when I couldn’t, the blame was placed on me. This began long before the pain from endo kicked in as well, but once it did, it was a recipe for disaster. It was made clear that if I couldn’t keep up with the “norm,” I would be replaced (and at one point in my first marriage, I was replaced for a few months while I fought to “win” my then husband back with daily sex.) I obviously did not have much self-worth and felt like the problem was all mine. I thought I needed to go on medication to raise my libido, to be stronger to fight the wall that my heart and mind were putting up (now I realize for good reason), to be more open minded with things that made me very uncomfortable, etc. Now, I am remarried to a man who truly loves me down to my soul and sex is an expression of that love, not an expectation that I’m supposed to live up to. When the pain gets too bad, or the PTSD-like walls come up, my husband holds me close and tells me I am perfect just the way I am and that making love extends far beyond intercourse. Then something amazing happened that I never thought possible. I began to actually *enjoy* sex. It became something for me AND my husband…together. When my needs, fears and pain mattered, and I felt less like an object that needed to keep up with performance, I began to experience a freedom I had never felt before and that freedom allowed me to focus on my needs and wants. And knowing that I am safe and loved, even if my body never allowed for another day of actual intercourse, my walls came crashing down. I have felt things I have never felt before. Yes, the pain still interferes, but with pain medication and alternatives to actual intercourse when the pain meds aren’t helping enough, we have a very “normal” (real normal as opposed to fantasy normal in my previous marriage) and amazingly fulfilling sex life. I never knew it could be this good. I finally see that there is nothing wrong with me aside from the pain this disease brings and that the problem in my first marriage was not me, or my libido. I didn’t need some sort of female Viagra. I needed love, respect and understabding. So men who want more sex and are pressuring your wives into it…you are doing it wrong! Actually cherish, listen to, and respect your wife and her needs and you just might find that there’s no need to pressure her.

  11. Wendi says

    “If she tells you she’s ready, then it means she’s waged the war in her head and she’s ready” I couldn’t have said it better. It really and truely is just that..a war.
    Someone said its like a knife when having sex and it is, I went through years of telling Drs it’s like a hot knife and being fobbed off as “its all your head” before diagnoses. I was 17 when I met my husband and 22 when Endo hit so I never had to have “that” talk with him when first dating and can only imagine how hard it would be. We married knowing there maybe no children and I did give him the opportunity to go before the wedding because I felt he deserved better than me. We are 43 now and have been dealing with this for all that time and now a diagnoses of Andenomyosis as well. Three children, two miscarriages and two surgeries later it’s still a struggle. Surgeries have made my pain more bearable physically for sex but mentally the scars run deep and my bodies reaction to the possibility of more pain doesnt help. If I’m honest there are times when I fully expected my husband to leave but he hasn’t.. And I love him even more because of his support. I try not to moan too much to him, and a lot goes unspoken but he knows and supports me as best he can. It’s like living with any illness really we just need support and love, but we need intimacy on many levels not just sexual because sometimes thats beyond our ability. Sometimes we need to hear ” I know we aren’t going to have sex but I just want to hold your hand, sit next to you on he couch and cuddle” no demands or expectations because sometimes an off handed normal comment or joke about expecting sex can be perceived as a putdown by a woman whose struggling with guilt about not being a “normal wife”. It’s a a rough ride for everyone full of hormones, tears, pain, frustrations, and losses but a man who stands by and supports a partner through this hell will be loved beyond normal love.