“Bolts of electricity shoot around my abdomen and pelvis and down my leg as I lie on the pillow-topped hotel mattress, attempting in vain to remain silent. My husband’s arm, heavy from sleep, is draped over my aching body. I turn to look at him as he snores softly, blissfully unaware. No one told me the wedding night the night I dreamed about, would end with unbearable pain. Is this normal? Should it have felt like shards of glass stabbing me while moved inside me? I try not to let him hear me crying as I close my eyes and try to ignore the sharp electric-like currents terrorizing my body…
There is no one to speak to. I am the sole occupant of a vast and desolate island on which my innermost secrets cannot be shared, not even with my husband. Who to speak to? What to say? What to do when the event that should bring pulsating all-encompassing passion brings only excruciating pain instead? Who to tell when the one act that should create ecstasy and bliss causes pure agony? I should adore the sense of unity I feel with my husband when we are together, treasure each second that my body fuses with his. But, instead, all I feel is the white-hot sear of pain when he enters me, the blackness of despair when I know that I cannot share my pain with him and the blushing red of embarrassment when he knows I am not being honest…
How can I share the feelings of torture that overwhelm my body when he is inside of me? How can I let him know that he, my beloved husband, is the cause of my misery? How can I share with him that his body alone creates immense wretchedness in mine. I will never do that to him. I will never make him aware that he is the source of the agony that rocks my body through and through. Instead, I will live with this agonizing, heart-wrenching secret of mine. This secret that isolates me, that creates a fissure so large between me and my husband that I wonder if we will survive as one. And I will continue to allow my body to be exposed to the beatings and abuse that are, in reality, tender loving touch.”
Sound familiar anyone? Can you relate? Do you know what this girl means when she describes the pure agony that consumes her as she tries to have sex with her partner? Or the emotional turmoil she experiences as she tries to hide the pain from her partner? Well my friends, that girl is me, writing in my journal for the first year of my marriage.
You see, for many women with endometriosis, myself included, sex is not the erotic, passionate and pleasurable experience that we all wish it to be. In fact, according to a recent study in Italy, more than half of women with endometriosis experience dyspareunia, or genital pain associated with sex. Two types of dyspareunia exist. The first type, called superficial dyspareunia, is when the pain is felt at the opening of the vagina, and the lower part of the vagina. This pain is usually felt during the act of penetration and can easily be diminished by ceasing penetration. The second type, called deep dyspareunia, is felt deeper in the pelvis and thighs and can last for hours or even days. Women who have endometriosis, specifically recto-vaginal endometriosis and endometriosis on the cul-de-sac experience this type. There are many medical causes for dyspareunia other than endometriosis, such as vulvodynia, vulvar vestibulitis and interstitial cystitis. While this condition has historically been defined as a psychological issue, more recent treatment approaches lean towards the theory that dyspareunia is a combination of both physical and psychological causes. (More on dyspareunia theories).
In women with endometriosis, physical pain during sex is due to the presence of lesions found all over our insides, specifically behind the vagina and in the lower parts of the uterus. Having anything inside of us pushing or stretching those growths causes sheer agony, also described as burning, stabbing or deeply aching pain. It is intolerable, enough to make us scream, cry, or even throw up. This pain can start as early as the beginning of penetration and last up to 24-48 hours later. Women with endometriosis who have had a hysterectomy or who are going through hormonal treatments may experience pain due to vaginal dryness as well.
Dyspareunia has also been connected with more negative emotional attitudes towards sexuality as a whole. Studies have found that complaints of pain with sex are associated with low physical and emotional satisfaction, as well as decreased general happiness. Depression and anxiety were found more often in women with dyspareunia than control subjects.
Experiencing dyspareunia causes a loneliness inside of us that is worse than the most agonizing pain. Aside from simply not being able to connect sexually with people that we care about, we often feel compelled to hide our feelings from our loved ones so as not to hurt them. We would rather harm ourselves than tell our partners that they are hurting us. Keeping that a secret from them isolates us terribly, and fills us with a guilt that eats at our hearts. We are also consumed with incredibly strong guilt stemming from our inability to allow our partners the pleasure we know they deserve.
Fear of rejection is also a large part of the emotional pain associated with sex. We worry that our pain will cause our partners to reject us, whether because they have sexual needs that are lacking, or because they don’t want to cause us any harm. Ironically, many of us have experienced the strange situation in which we find ourselves begging our partners to have sex with us even though we know we will suffer. Aside from the pain experienced by those of us actually suffering with this disease, it is also important to mention the emotional anguish that our partners who don’t have endometriosis go through. They too have feelings of rejection when we refuse to have sex, and can sometimes feel insecure about the relationship. Unfortunately, their need to be loved and love another is sometimes inadvertently ignored.
Due to endometriosis-associated dyspareunia, sex is often a dreaded nightmare fraught with worry. We worry that we’ll have unbearable pain if we choose to have sex and that we will offend our partners if we choose not to have sex. We worry that when we do want to have sex our partners will refuse for fear of hurting us. Instead of bringing us closer to our partners, sex puts a strain on the relationship that is hard to overcome.
This post was published previously on Hormones Matter in January 2013.
So this is causing me to not even want to b touched at all in like an emotionless mister when it comes to intimacy my husband c’mon lay here naked and I don’t even look at him at all
Thank you for sharing this.
So my girlfriend had endometriosis and needless to say her sex drive is gone and starting to take a toll on our relationship. I’m in love with this girl and even with all of it i plan on marrying her next year. What are some natural things we can do to cut down pain and increase her libido?
Sorry has endometriosis not had*
Hi Matt. my boyfriend and I have been together 10 years and the entire time I have been dealing with endo and IC which caused painful sex and tearing. Here’s what you and your girlfriend can do:
Go see a pelvic floor physiotherapist! It’s a special therapist specifically for this area. Many women are scared of it because they think it will be like going to the gyno, but it’s not at all. They give women lots of privacy and basically do internal massage of the muscles that cause the pain. They also teach the women exercises they can do, and if the guy is willing they will show you what YOU can do. it’s a little weird at first, but we actually had better success when my boyfriend would do the massage than when I did it. They also teach women how to use dilators which start of really small (as small as a pencil) and used to stretch inside. They’re like a dildo but much harder. They go up in size and as a woman gets comfortable with one she moves to the next. I know it sounds crazy and weird but I swear this stuff really helps.
there are a few vaginal inserts that soothe the sore parts, keep things lubricated, and prevent tearing. Repagyn is the best and all natural but may not be available in your country. if that’s the case look for a vitamin e vaginal suppository. they’re perfectly safe, natural, and help a lot.
lastly, something you guys can do to help sex is ask for a prescription of lidocane cream (sometimes called xylocane) she can use it like a lube inside (not outside) and you would need to use a condom. It numbs the inside of the vagina so the muscles don’t spasm and her body can stretch naturally. My boyfriend and I still use this trick whenever I regress back into my symptoms again.
My boyfriend and I have lasted 10 years (we plan to get married eventually hahaha) and for me this will never 100% go away because it’s the result of two illnesses. but we’ve managed a normal and happy sex life by doing these things.
Great article. My wife and I have been dealing with this for a couple years now. It is emotionally draining and puts a lot of unwanted strain on our relationship.
One thing that another article could touch on or point out is that there are other alternatives to be intimate with your partner such as oral sex or mutual masterbation…etc. Mixing up the type of intimacy can help reduce the psychological and physical pain while reducing the strain on the relationship stemming from painful intercourse.
Thank you for sharing!! Has anyone been able to identify any natural remedies.. or does anyone have any tips or suggestions to improve the pain associated with endometriosis!!?
Thank you so much !!!!
My partner has Endometriosis and we are also looking for a remedy medically for her pain during intercouce if any one can help with advise please
Read this. Leslie does great work in this area. http://www.hormonesmatter.com/why-does-it-hurt-when-i-have-sex-sexual-pain/
Thank you Sonia and Erica! I hope that my story was able to help you realize you are not alone in your struggles. I wish you both the very best in your relationships!
An amazingly open, honest and true representation of sex with Endometriosis. Myself and many other women I’m sure know exactly what these words mean wholeheartedly.
These words could have come from my hand. I live with this and although my husband is really understand he will never understand and our relationship is always something that is being fraught due to this illness . If only there was a magic wand xx
I could not have explained it better myself. I am so torn not being able to please my partner like I want to. Especially when symptoms were not present until about a year and a half into our relationship. Quite a shift in how we operate… Makes me sad and I am personally on a journey to eat and drink as pure as possible to purify my body and mind. I refuse to allow this condition to rob me of such essential beauty and love.
Beautifully written, as always Rachel. Sex isn’t exactly impossible, but with all the challenges sex presents it may as well be called impossible. The emotional side of it, as you describe, can be heartbreaking. Thanks for tackling this topic. 🙂
I have had endometrosis lasered once…I managed to get one year PAIN FREE…the biggest lesions were behind my bladder and near my cervix. I don’t know sex without pain but have managed to work around it. I expect pain in certain positions (missionary for sure) High doses of Vit D3 seems to have eased some symptoms, especially painful periods. (I take 10,000iu a day per doc recommend) 48 yrs old, 34 yrs of painful sex and still hanging in there 6+ times a week.
Mairin, I am so sorry that you too suffer! It is so important that we who deal with this issue are able to share it with the world and give a voice to those who find it hard to speak of it. Feel free to be in touch with me if you need a listening ear. And feel free to read my blog, endofromtheheart.blogspot.com where I try to put into words other issue that we deal with…
Philippa, you are most welcome. I wish for your sake you did not relate to the topic but I am glad to be able to put it in words for you. I hope you are better as well!
thank you so much for putting my pain into words!!
I understand now that it’s the lesions that rip & tear & the twisting of the organs & skin inside & out that causes SO MUCH PAIN,& to tell it to your partner & for them to understand there is nothing they can do is heart breaking,Men just want to fix things for their loved ones,that’s how they show their love & care….it is a horrible physical & emotional disease we have & one day I hope for a cure,in the mean time talking about it openly & getting it out in the public arena is a blessing in disguise! ,thank you so much ! xxx
Thank you for writing about this topic. It certainly doesn’t get talked about enough considering how common it is with endo. I could definitely relate to your article. I hope things are better for you now.
Lisa, thank you so much for your kind words! I hope that through my writing, other women will feel like they can open up about this subject.
Thank you for sharing your story! It is beautifully written and I am so sorry for your pain! Your journal entry is especially poignant. Your story is valuable and I appreciate your willingness to share it.