genital pain

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. 

 

Pressure on the Perineum – A Woman’s Bicycle Story

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Sometime ago I read an article in the New York Times about the impact of cycling on one’s nether region. Though the article noted discomfort in the genital area of women, scientists mainly focused on erectile dysfunction. The study cited was even titled “Cutting Off the Nose to Save the Penis,” clearly concentrating on men’s health.

Even so, I began to wonder how pressure on the perineum could impact my own sexual health as a woman, especially when I began to feel numbness and tingling in my genital area. This sensation worried me; like most women, issues regarding my genital sensation and sexual health concern me.

I tried to figure out what had changed that may have increased the pressure on my perineum. It didn’t take long before I determined the culprit for my sore punani: my purse.

It was the same tote bag I had been using to transport my wallet, glasses, and dictionary; but over time it amassed everything I decided I couldn’t do without: Issues of the New Yorker, books, notebooks, iodine (for injuries), occasionally my computer, and more.

I decided that the added burden was probably pushing down on my crotch, causing pressure on the perineum and potentially affecting my sexual health, so it had to go.

After removing the unnecessary weight from my bag, the perineal pressure was significantly reduced, and I noticed the difference right away. I was able to enjoy a comfortable bicycle commute again, without worrying whether the ride was detrimental to my vaginal health.

I have since learned cycling can negatively impact a woman’s sexual health. The New York Times recently posted an article about the impact of cycling on a woman’s sexual health, and reported scientific findings that point to genital desensitization due to frequent bicycle riding.

Female cyclists do not, however, have to stop cycling in order to protect their genital sensitivity. We just have to understand what causes genital desensitization and what we can do to avoid it.

Preventing Pressure on the Perineum

The main reason female cyclists experience vaginal distress is because we are putting too much pressure on the perineum, a part of the body that is not designed to bear weight, and this perineal pressure cuts blood circulation in the genital area.

There are various ways women cyclists can reduce pressure on the perineum and improve their sexual well-being. Women’s bodies and needs vary, so determine what suits your needs best.

  1. Noseless saddle.While I have yet to purchase a noseless saddle, it is next on my to-do list. The noseless saddle is a type of bicycle seat that forces cyclists to carry weight in their sit bones, as opposed to their perineum. We often press our perineum against the “nose” of our bicycle saddle, but with no seat nose, there’s no way to put pressure on the perineum.
  2. Adjust your handlebars. Many cyclists lean forward to reach their low-positioned handlebars, often flattening their backs, so they can ride in an aerodynamic position. Unfortunately, this position causes added pressure on the perineum, which scientists have found can decrease vaginal sensitivity. Luckily, this perineal predicament can be fixed by raising your handlebars.
  3. Adjust your bicycle and your riding position. On a similar note, it is important that your bicycle is adjusted to fit your body size and needs. Your saddle is not designed to take on all of your body’s weight. Instead, your weight should be distributed to various parts of your bike in order to minimize pressure in any one place, like the perineum. For instance, pedaling with the balls of your feet enables your legs to bear the weight of your body better.
  4. Give your perineum a break. If you bike for long distances, your body is bound to get tired and weigh more heavily on your bicycle seat – stifling your perineal area. Stand-up-saddle riding, where you stand up while cycling, completely relieves the pressure from your groin and permits blood flow in your vaginal region.
  5. Reduce the weight. I’ve learned from personal experience that added weight just bears down on the perineal area. In order to minimize the weight you carry on your body, consider saddle bags, or baskets, which place the weight on your bicycle instead. You can also just clear out the clutter in your purse.

Spinning and Pressure on the Perineum

I haven’t taken a spin class, but I’ve been informed that it entails the same perineal pressure, with few adjustments that can be made to the stationary bike to improve comfort. In this situation, women may want to consider padded bicycle shorts to minimize pressure on the perineum.

This story was published previously on Hormones Matter in 2012.