recto-vaginal endometriosis

Love Hurts – Sex with Endometriosis

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 “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. 

 

Reflections on Becoming a Woman

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Endometriosis Symptoms began with Menstruation

I remember that day perfectly.  I was eleven, in the sixth grade, 4’8 with brown frizzy hair – in the midst of that awkward transition from girl to woman.  It was the first time that my Dad had taken me to the doctor (the pediatrician to be exact).  My dad – a sympathetic and caring man – quite naturally hated seeing his daughter in so much unsubstantiated pain. Usually both he and my mother would accompany me to the doctor, but today that responsibility was left solely to him.   As we sat in the examination room, him in a plastic chair and me on the examination table – feet dangling off the side, I remember hoping not for an answer but for validation, validation that my pain was real.

When I was ten I started getting these mysterious ‘stomach aches’ they’d come and go and with each one I’d go to the nurse and the nurse would tell me I had to stop avoiding recess, or gym, or whatever activity I decided to skip that day.  To be somewhat fair, I would usually go to the nurse during gym.  My doctor sent to the gastroenterologist several times, with no luck.  The gastroenterologist suggested that maybe I was lactose intolerant and that I should take lactaid.  No tests were ever run – I was told; “take lactaid and if it helps, your problem is solved.”  My problem wasn’t solved but I still took the lactaid hoping that eventually it would work.

So there I was – at the doctor, missing yet another day of school, with my Dad in his suit, missing yet another hour of work.  The door opened and in walked my pediatrician, disapprovingly muttering my name at the sight of me yet again, in her office.  We went through the steps, her feelings my abdomen, asking me about my eating and bathroom habits, the works… Except this time she seemed more exasperated than usual “Jordan” she said emphatically “You are like the little girl who cried wolf, there is no reason for you to be in this much pain.  If you keep ‘crying wolf’ one day you might actually be very sick and no one will believe you.  Don’t make me send you for a sonogram!”

How I wish I wasn’t 11 years old at the time and absolutely petrified of a sonogram; which I assumed to be some gigantic needle that would be placed through my forehead or some other awful place. Needless to say, I never got that sonogram until about a year later, when I rushed into emergency surgery for a problem that a sonogram could have picked up a year earlier.

Endometriosis

The average endometriosis diagnosis takes 7 years; fortunately, mine only took 2 ½.  The day I found out I needed surgery I had an appointment with an endocrinologist to discuss why I was so short.  I was born with a Ventral Septal Defect (VSD) – a hole in my heart- which took longer to close than expected.  For some reason, unbeknownst to my doctors, I failed to thrive as a child.  I was mentally advanced but physically I was in the 1st and 3rd percentiles respectively for height and weight.  I was very small.

I had gotten my period for the first time 6 months prior to that appointment. My period would come every 7 days and last for about 11 days.  When I did have my period, I would be incapacitated for the first several days, writhing in pain, unable to move from fetal position. My doctor told me “Welcome to being a woman, you must have a very low pain tolerance; it should get better within a year.”  Well, it didn’t. So there, at the endocrinologist, I laid on the examination table, curled up in more pain than usual. I was sweating and barely coherent.  My mom stood there wiping my forehead with a cold paper towel. The doctor walked in took one look at me and her face contorted with horror.  “What’s wrong” she exclaimed as she made her way over to examine me.  As she made her way towards me I jumped up and ran across the room, barely making it to throw up in the sink. My mom followed after me; “she has her period” she nonchalantly conveyed to the doctor, since this had become the normal routine in my house. My doctor took another look at me, shook her head at the insistence that I had been lead to believe this much pain was normal and called for an orderly to escort me to the emergency room.

Uterine Didelphys: Two Uteri

Less than three hours and one morphine shot later, I was being prepped for surgery.  Turns out my periods were so out of sync because I have uterine didelphys – two uteri (aka the plural of uterus). One of my uteri, was blocked and so when I would get my period, the blood wouldn’t drain, rather it would collect in my uterus. Every time I got my period my uterus would contract and try to push out the 6 months worth of blood that had collected in my uterus – to hold all of this blood and uterine matter my uterus had filled to what was analogized as the equivalent of being 3 months pregnant.  They removed the blockage and told me that was it, the pain would be over.

Except the pain wasn’t over and six months later, I was back in the hospital for exploratory surgery to try and find the cause of my pain.  After an hour long procedure, it was discovered that I had mild endometriosis.  My surgeon told me they removed all of the endometriosis and that was it, the pain would be over.

Except, the pain wasn’t over and still isn’t.  There is no cure for endometriosis. While surgery has alleviated some of my pain, it has not cured the disease.   I am 21 now; I have had 5 surgeries for what is now stage IV, recto-vaginal endometriosis that is working its way up towards my liver.  Altogether I have had 15 surgeries – 9 for my eyes and one to remove a cyst unrelated to my endometriosis. I know pain better than I know my best friend but not once have I let pain get in the way of my life.  I went to prom with a 103 degree fever, half delirious from morphine, with my clutch overly stuffed with pads and tampons. In addition to my endometriosis, I have a lot of auto-immune and digestive issues.  I am highly sensitive to yeast, I have thyroid disease, glaucoma, and I suffer from migraines.

I have a secret though, a secret for dealing with my pain.  Even though on paper, I might not be healthy; I live my life as if I were healthy.  I decided that I wasn’t going to let myself (or rather my body) stop me from doing the things I love to do.  Some days that is harder than others but it is all about positive thinking and motivation.  Your body is your temple; you need to take care of it.  I am a vegetarian, I do yoga and I try to love my body, even when it doesn’t love me back.  My rough road to womanhood has taught me strength and has given me the ability to stand up for myself and what I know to be right; and for that I am thankful.