Tags: experts, female sexual dysfunction, FSD, guest post, health, medicine, pain, pelvic floor dysfunction, relationships, sex, sexual dysfunction, sexual health, vaginismus
[Dear internet, we have a guest poster today! The following was written by Elaine F. Bayless:
Elaine F. Bayless is an author and pastor who lives in Raleigh, NC. She is currently working on a memoir about her experience with pelvic floor dysfunction. After choosing to have surgery to correct her issues, she is happy to report that most of the dysfunction is resolved. She and her husband are expecting their first child in July of this year. For more information about Elaine’s published work and her writing process, visit her blog http://elainefbayless.blogspot.com]
I am one of the lucky ones. I only saw three gynecologists who ignored my vaginismus. I only wasted 9 months of my marriage in therapy, convinced that my pain was psychological. My husband never forced me into sex, never punished me for my condition. It only took me six years of treatment to finally find resolution in the form of penetration concomitant with orgasm – MY orgasm.
In November 2010, Discover magazine’s column, Vital Signs, discussed an intern who missed the symptom of painful intercourse. When the doctor asked him about this symptom, he admitted that he thought all women found sex painful. This doctor was shocked to discover this attitude in an “educated” person. I’m not shocked.
Women just don’t enjoy sex that much. That’s the pervasive belief in our society. And women who do enjoy sex are often penalized. We aren’t supposed to enjoy it, after all. We are supposed to be enjoyed. We are objects, not subjects. I still remember vividly an encounter in my recent past, when I had multiple orgasms and my husband had none. I was apologetic! But he had no regrets. He simply smiled and said he was glad I enjoyed myself. He’s a true man, someone who understands that sex is a two-way activity, an encounter between two participants, not between a subject and object. How does this belief play into the diagnosis and treatment of dyspareunia? In every way. My own story serves to illustrate it.
I had my first Pap smear at age 18. I was a virgin, but irregular periods plagued me and so I wanted to go on the Pill. The exam was torture, but every year I went back. My gynecologist was unconcerned, blaming me for not relaxing. She never gave me any tips on how to relax, never suggested anything to try to make things less painful, even when I almost passed out from the pain. My gynecological history post college was sporadic. Still a virgin, I went on and off the Pill, only getting a couple of Pap smears. Each time it was excruciating. I didn’t use tampons – too painful. But I kept that a secret. My doctors assumed that I didn’t enjoy insertion because I wouldn’t relax – that it was my fault, not something beyond my control. After all, women don’t enjoy sex, why would they enjoy an exam?
Prior to my marriage, I went to a friend’s gynecologist, highly recommended. I shared with her my pain issues. I asked her specifically to determine whether there were any reason why sex would hurt (I was still a virgin). This was her chance – her opening to discuss dyspareunia with me, to talk about different causes for pain in the vagina. Surely my medical history, my fear of tampons, and my simple reaction to the exam should have clued her in. She told me to relax because there was nothing wrong with me.
Why did this doctor not even mention the possibility of actual physical conditions that could cause pain during intercourse? Why did she assume that after 11 years of pain during vaginal exams I would be able to relax? I guess she figured I would learn how to grin and bear it, like many women do.
Because of her bad advice, I went to see a therapist immediately after my honeymoon, convinced I was mentally screwed up. After all, physically I was fine, right? When my prescription for the Pill ran out, I went to see a new doctor, a nurse-practitioner who specialized in seeing rape victims. I knew she would be sympathetic. She gave me a tranquilizer to take prior to the exam. It did nothing – my blood pressure was through the roof and I winced at the moment of first contact. And that wonderful woman sat back and told me I needed to see a physical therapist.
The discovery that there actually was something physically wrong with me – that I was incapable of relaxing – that was a turning point in my entire life. I had never heard of vaginismus, vulvar vestibulitis, dysparaunia, etc. I didn’t know that walking around with a constant Kegel was abnormal. (To this day I still catch myself in “locked and loaded” position). Finally I was able to clear the self-blame and self-doubt that was tormenting me and my marriage. I had a physical problem!
I still listen to women who have bought into the lie that we don’t enjoy sex. They say that their vaginas are too small. They say that they don’t enjoy orgasm. They continue to engage in sex that is unfulfilling. I was teaching a group of high schoolers about sex and counseled them to stop having intercourse if it hurt. They all looked at me blankly and then asked why. I was horrified.
We are not sexual objects. We are sexual subjects. I am currently pregnant with my first child, a little girl. A girl conceived during pretty fantastic, orgasmic sex. (Sure, it took 6 years, 3 physical therapists, and surgery, but it was WORTH it). And one of the most important things I hope to teach her is that sex feels good. And if it doesn’t feel good, she will have to be her own advocate and work tirelessly to find the cause and the solution. I hope that the world will have changed somewhat by then – that the medical establishment will have a better understanding of sex as something that is designed to be enjoyable. For anyone.
Tags: disability, female sexual dysfunction, Feminism, FSD, guest post, health, intersectionality, media, medicine, pain, sex, sex education, sexual health, vulvar vestibulitis, vulvas, vulvodynia, women of color
This was cross-posted to Womanist Musings.
For the purposes of this post today, I will be focusing on vulvodynia; however keep in mind that there are other causes of chronic pelvic and sexual pain; likewise there are serious sexual problems besides pain which also deserve attention.
Vulvodynia is a syndrome, a collection of symptoms, centered around chronic vulvar pain, lasting longer than 3 to 6 months. Pain (commonly described as burning, stinging, stabbing, rawness and/or irritation,) may occur in the vulvar vestibule, mons, urethral opening, labia, clitoris, or elsewhere in the vulvar area. Not all instances of vulvar pain are vulvodynia, and for some women vulvar pain may resolve on its own.
Vulvodynia does not have one universal cause; some possible causes include injury, sensitivity to vulvar microorganisms (like yeast,) hormonal changes, muscular problems, etc., though for some folks the cause will remain unknown. For some women, vulvar pain is caused by pudendal neuralgia or pudendal nerve entrapment. Everyone is different, so some women experience pain all the time without provocation while others experience pain only when attempting to insert something vaginally. Likewise, for some women, it is still possible to enjoy sexual activity even with vulvodynia, while for others sex will become too painful to engage in. There are a number of treatments available for vulvodynia, but no single cure, so women with vulvar pain may have to burn through multiple doctors and treatments before finding the right one.
Who develops vulvar pain? I have seen several sources which present similar estimates as to how many women experience vulvar pain at some point during their life – at least, in the United States. According to one 1991 study, about 15% of 210 patients attending a gynecology clinic met the criteria for a diagnosis of vulvar vestibulitis. According to a 2002 release from the National Institutes of Health, about 16% of over 3,000 survey respondents reported chronic vulvar pain. (More on this figure in a bit.) The raw numbers seem to vary more; this same NIH release estimates that up to 14 million US women will experience vulvodynia at some point during their lives, whereas media coverage such as the Dr. Oz show estimate that there’s about 6 million US women currently living with vulvodynia. One thing all these studies agree on is that chronic vulvar pain, while not experienced by a majority of women, certainly isn’t rare either.
However, for a long time, I thought that women of color developed vulvar pain like vulvodynia less frequently than white women. I believed this, because I saw such statements in books, I saw it in studies, I saw it in the media and I went along with it. I realize now that I was completely and totally wrong. Vulvar and sexual pain does NOT just effect white women and in fact the rates of pelvic pain in white and nonwhite women is similar. But how many people still don’t know about vulvar pain in women of color? How many doctors and gynecologists are, like I was, under the impression that their nonwhite patients rarely experience nameable vulvar pain conditions which have treatment options available?
Here’s why I was wrong and why you too should care about women of color and chronic pelvic pain:
One of the first resources I picked up when I started looking for treatments was Dr. Howard Glazer’s The Vulvodynia Survival Guide, which is all about vulvodynia. Here’s what Glazer’s book said about vulvar pain and women of color…
“For unknown reasons, African-American women as a group are the least likely to report vulvar dysesthesia, or any other type of vulvodynia” (Glazer, 19). And “Again, Caucasian women have vestibultis [a specific, localized type of vulvar pain -K] more than any other racial group (Marinoff and Turner, 1992).” (Glazer, 23).
It goes on. In the late 1990s, early 2000s, Glazer organized a survey of women with vulvodynia though his website, vulvodynia.com, and in his book he reported that 90% of the survey respondents were Caucasian; “Less than 1 percent were of African origin” (33.) Additionally, it’s worth noting here that according to this same survey, participants’ “Socioeconomic status was higher than average; 62% reported incomes greater than $50,000” (33,) and the majority also held “professional, managerial occupations,” and “59% had completed college” (33.) Glazer cautions, “The higher levels of socioeconomic, education, and occupation status is consistent with previous studies. Why? Unfortunately, it’s probably because educated women with access to money for medical care are the most likely to pursue the best, most sophisticated medical treatments (or at least to use the Internet” (33.)
But who is also the most likely group to be in the higher socioeconomic class and have a high level of education, and be in a better financial position to use technology and seek medical care? White people, in the US. Because of this, the design of Glazer’s study itself most likely skewed the results to exclude women of color. However, he went on to state,
Caucasian women reported more vulvar pain than any other ethnic group. African-American wome rarely report these conditions. Researchers aren’t sure why this is true, though it has been commonly observed by many of our colleagues in the International Society for the Study of Vulvovaginal Disease, who practice and teach in various medical settings where women of various races and incomes are seen. Other dark-skinned ethnic groups, such as Indians, do report chronic vulvar pain syndromes (33).
Hmmm, Glazer sure spent a lot of time driving home his point that black women don’t report vulvar pain frequently and that white women do.
But wait, there’s more. The results of an oft-cited but highly controversial, hotly contested study of sexual dysfunction in the US, Sexual Dysfunction in the United States, also stated that black and hispanic women were less likely to report dyspareunia,
The association between race and ethnicity and sexual problems is more variable. Black women tend to have higher rates of low sexual desire and experience less pleasure compared with white women, who are more likely to have sexual pain than black women. Hispanic women, in contrast, consistently report lower rates of sexual problems. (Laumann et al, online).
Additionally, media coverage of vulvar pain frequently reinforces the idea that it’s mostly white women who experience vulvar pain. Stock photos and illustrations that accompany books and articles about vulvar and sexual pain overwhelmingly feature white women. (See for examples, here, here and here – I could easily go on!) The erasure of women of color with pelvic pain and dyspareunia happens on television too, with a few exceptions; for example in 2008 the television show Oprah explicitly reached out to women of color in an e-mail requesting participants willing to talk about vulvar pain. Alas, to this day, although filming has been completed, that episode has not aired on tv. Another exception took place in 2010 on the Dr. Oz program, which ran a segment on vulvodynia. The original 8-minute segment included a guest woman of color who briefly commented on life with the pain condition (unfortunately the second half of this segment has been excised from the online video.)
However, the prevalence of vulvar pain among women of color may have been understated. The study which the NIH release above references is, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia? The abstract contains this critical line: “Contrary to earlier clinical assessments, white and African American women reported similar lifetime prevalences. However, Hispanic women were 80% more likely to experience chronic vulvar pain than were white and African American women” (Harlow and Stewart). Harlow & Stewart’s survey is no fluke; the WebMD article Vulvar Pain isn’t so Rare refers to a University of Michigan study published in the 2004 Journal of Lower Genital Tract Disease, “Although previous reports show the condition is rare among black women, the responses indicated that this is not the case. Black women had similar rates of vulvar pain as women of other races.” (Reed, online).
And as for Dr. Glazer’s claim that women of African descent rarely report pain outside of US settings? Even that has been challenged! In 2005, a study in the Journal of Reproductive Medicine revealed that 22.8% of women attending a general medical clinic in Ghana reported vulvar pain, which was linked to sexual dissatisfaction.
I am certain that effect of emphasizing white women’s reported rates of vulvar pain over that of women of color is silencing to this day. So what’s being done to address this revision in what caregivers should know about vulvodynia? The NVA’s fact sheet on vulvodynia now reflects that nonwhite women are just as likely as white women to develop vulvodynia. The language explicitly shows a change of perspective, from vulvodynia being thought of as primarily a Caucasian women’s issue to much broader. An NVA newsletter, Faces of Vulvodynia, included identifiable women of color like Karen, Yamalis, Amanda, Michele and Emily, who are willing to be interviewed by the media.
Unfortunately vulvodynia remains difficult to diagnose and it doesn’t help that some doctors remain ignorant of its very existence. Even doctors who do know about vulvar pain conditions may not be up do date with all the research. And doctors who are well-trained to address chronic pelvic and genital pain may be too far out of reach for many patients, both in terms of money and geographical distance. Genital and sexual pain received some media attention in 2010 but it still remains very much a taboo subject, and it is the butt of crude jokes surprisingly often. Society, guided by the long tendrils of patriarchy, pushes women to learn how to please men sexually, and so there is also pressure to perform sexual activity – even if it hurts. It shouldn’t have to be that way. And the quality of sex education is highly variable – I recall my own sex education lacked any mention of pain other than what happens when the hymen is broken.
If you or someone you love is experiencing chronic vulvar and/or sexual pain, some resources available online include the NVA in the US or the ISSVD internationally. A short list of some available treatments is available from the Mayo Clinic’s site.
Tags: female sexual dysfunction, FSD, guest post, health, medicine, pain, sexual dysfunction, sexual health, vulvodynia
[Dear internet, we have a guest poster today! Rhiannon was the first guest poster we ever had here on Feminists with Female Sexual Dysfunction. It’s been a little over a year since her first post with us, and she has volunteered to share a follow-up of what’s been happening with her vulvar pain since then. The following account comes with a trigger warning though, for invasive medical procedures and brief mention of self-harm.]
The wisdom – or not – of pursuing medical options
A lot has happened since my last post. I spent most of the year celibate, trying to embrace that as a queer identify, and not really getting there; in September, I began a triad relationship with a man and a woman who were a couple. It has all fallen apart now, but my relationship with the man folded first, and a big part of that was that we couldn’t have sex.
When I told my GP this, she asked whether I was in treatment for the vulvodynia. I said I wasn’t, and explained how grim the treatment options had seemed before. She suggested that I could get a second opinion.
“Can’t hurt,” I said. I was wrong.
Now, going to the gynaecologist to have your vulvodynia examined is always going to be at least a little painful, because the chief symptom is pain and they have to cause a little in order to see where it is. The classic way of doing this is the cotton-bud test – a controlled and relatively gentle touch to the painful area to confirm its location. I know because I’ve had it done several times in the past.
Apparently this consultant hadn’t heard of it.
I had my history taken by a relatively nice registrar, and I thought that if she examined me it would be okay. Once she’d taken my history, though, she said she had to fetch the consultant because she’d never seen this before – fair enough, nobody can know everything – and I should get ready and wait on the bed. A nurse came in and talked me through the need to take my knickers off and pull my skirt up (and cover the tops of my thighs with that silly little piece of paper they always use… what purpose is that supposed to serve?).
The consultant appeared. He was a big black man who didn’t speak directly to me, just found his gloves and went to have a peer and a poke. I am aware that my prejudices could be showing here; I think that I would have found the behaviour rude in a white doctor or a female doctor, or indeed a shorter doctor, but I might not have been as frightened by it.
My Bartholin’s glands are visibly inflamed, and most doctors see that. I don’t think he noticed them, although I had mentioned that specifically when my history was taken by the registrar; he certainly didn’t try and avoid touching them. I have been examined many times, and it’s never comfortable, but this was very painful. It was as painful as penetrative sex is, in fact.
I gasped and cried out, I nearly screamed, and it must have been obvious because the nurse felt the need to hold my hand.
Afterwards, I was shaking and in tears. I was left alone to get dressed again – I managed to calm down by one of my milder self-harming methods. After what seemed like a long wait, the consultant and registrar returned with what appears to be a hurried print-out of some basic information (I suspect I know which website they used).
“I’ve never seen anything like this before,” the consultant told me. “I’m going to have to ask around and see who I can refer you to.” They said that; the referral letter hasn’t arrived a month later, and if the new consultant will be anything like this one I shall have to think twice about going.
They left me alone with the nurse, who checked I was okay and had one last piece of final ironic advice: “Don’t go looking at the internet and scaring yourself.”
I was too shaken to tell her that the internet is the only place I’ve found comfort in facing vulvodynia.
Tags: books, communication, experts, female sexual dysfunction, Feminism, FSD, guest post, language, orgasm, relationships, sex, sexual dysfunction, Sexuality
[Dear internet, we have a guest poster today! This is a post by pro-BDSM activist Clarisse Thorn, who blogs at Pro-Sex Outreach, Open-Minded Feminism.]
I’ve been working on a long article about my experiences with sexual dysfunction. It’s a project that’s been in the making for quite a while, but now that I don’t have so many distractions I’m ramping it up.
This is a complicated and difficult subject for me. I have a satisfying sex life now — I’ve gotten pretty good at communicating with partners, setting boundaries, seeking what I want, and masturbating to orgasm. It took me a long, long time to get here, though, and I had to get through a ton of confused feelings. Not just about coming into my S&M identity, though that was certainly a factor, but also dealing with feelings around the orgasmic dysfunction itself — for example, feelings about how my apparent inability to have orgasms meant that I was broken. (I had and still have some vaginal pain, too. Not every time, not even most times, and nothing overwhelming — but enough that I’ve developed coping mechanisms.)
In order to write this article, I’ve been going through a lot of years-old journal entries. One quotation particularly struck me:
[My boyfriend] comforted me the other night when I broke down and cried. I wept and wept and he said it was okay, you’re not broken, there’s nothing wrong with you. It’s okay, he said, not to want sex. But I do want sex, I’m just sickened and terrified and disgusted by it, and I don’t want to be anymore. I want to be able to watch sex scenes and not be enraged and disgusted, to read sensitive ones and not collapse in tears.
I wasn’t entirely sickened and terrified and disgusted by sex, of course: I often liked it. Loved it, really. Sex usually felt good even before I could have orgasms, even before I’d found S&M, even before I’d parsed out my feelings and learned more about sexual media such as porn. And I’ve talked a lot about how awesome and sex-positive my sex education was.
But I knew I was missing something, something crucial and integral to my sexuality. And I hated the way society seemed to always be informing me how to sexually act: I felt crushed into approaches that obviously weren’t working, weren’t meant for someone like me. It was hard to walk the line between craving sex and being unable to stand it.
Here’s another excerpt from my journal, around the same time:
I really hate reading explicit sex scenes. I didn’t used to hate it as much as I do now, and since I broke down in tears during the last one, I guess it’s pretty obvious why. Jealousy and hurt and hatred of the ideals I feel like they’re trying to forge into me, [one ideal being] that love and sex and particularly orgasm are all irrevocably intertwined, and that by missing out on orgasm I’m missing out on not only an aspect of sex but of love.
But mostly I guess the discomfort does come from not wanting to read the intimate details of another’s sex life … and the jealousy for the orgasm, still there, too deep to banish. Christ, it’s fucking ridiculous. I shouldn’t be this miserable about this. It’s so fucking unimportant in the grand scheme of things. — but the tears that startled me in my eyes as I typed tell me just how unimportant it really is to me, I guess.
I started reading some sort of book on having orgasms and wept all through the first chapter because it was so miserably true. And because it was so miserably true I feel as though I ought to read the rest of the book, just give it a chance and go with it, and maybe make it that way, but it hurt so much and I’m so scared that it won’t work, and then I’ll be really unhappy. (A reaction the book even outlined, by the way. Yes, it’s about as true as it gets — the only thing I’ve ever found seems to understand how I really feel about this.)
The book that struck me so much is the monumental For Yourself, by Lonnie Barbach. It’s a famous book. I searched it out at the San Francisco library recently, and spent an afternoon sitting around the Mission branch, trying to locate the passages that once touched me so much. A few quotations:
Do you sometimes feel that you would be happier if sex were eliminated from your intimate relationships altogether? If so, possibly you feel abnormal in this regard, or like a misfit or not whole as a woman. Or, perhaps you just feel that you are missing something everyone else has enjoyed, a part of life that you’d like to have be a part of yours, too. You probably feel as if you are one of only a few women who have this problem. But the truth is that you are far from alone. (page xiii)
A real fear that can keep some women from doing anything to solve their sexual problems is the fear of failure. When Harriet joined the group, she didn’t believe she could become orgasmic. She said, “If I tried, I’d only fail, and then I’d be really miserable.” … Harriet eventually did defy her fears, as did all the other women mentioned. It takes time and effort to counteract these fears. It means saying “I’m afraid” and yet pushing beyond. (page 14)
Is it because you’re embarrassed to ask for what you want at a particular time; afraid your partner will refuse, get angry, or feel emasculated? (page 15)
Empathetic and accurate so far. (As it happens, the only lover I ever directly asked for help during this orgasm-discovery process refused and got angry, which just goes to show that being afraid he might react that way was not all in my head.) Merely confronting so much understanding was hard to face.
But, although I read it a long time ago, I think I’ve figured out what it was that made me unable to read further: the way Chapter 1 ends is a bit much. The last page of For Yourself‘s first chapter contains this:
You have to assume responsibility and be somewhat assertive. Our culture has taught us that a woman should depend on a man to take care of her, which means she can blame him for any mistakes. It’s nice to be driven around in a car, but it’s also nice to be able to drive yourself so you can go where you want to, when you want to. But to do that, you’d have to assume some responsibility.
Well, okay. Except that how do you assume responsibility for something if you have no idea where to even begin? If you know something’s missing but you’re not sure what it is? If you’re sure your partner will be frustrated and resentful when you ask for help?
Orgasm involves us surrendering to what we’re feeling, and really rolling with it, even if and when it feels very emotionally precarious. It’s control we’re letting go of, really, and that’s harder for some folks than others.
I’ve been an off-and-on sex & gender geek throughout my life, so I already knew these things intellectually. I’d already absorbed these ideas: that I must both take responsibility for my sexuality, and lose control in order to enjoy it. I think even then I knew that both of these ideas are actually good advice. But the problem is that they’re often put in patronizing and less-than-helpful ways. For example, “It’s nice to be driven around in a car, but it’s also nice to be able to drive yourself so you can go where you want to, when you want to. But to do that, you’d have to assume some responsibility.” Condescending as hell! To me, those words implied that I was making myself into a helpless child. Pulling a wounded-bird act and forcing other people to take care of me. I couldn’t stand the idea that I was doing that!
I am frustrated by the insensitive guilt trips that often happen, even (especially?) in feminist and sex-positive circles, where people will sometimes act as if these things are simple, as if it is oh-so-easy to stand up and take on one’s own sexuality and Just Deal With It. Especially when you’re in a situation where you know for a fact that some men you have sex with will resent you if you’re honest about not having orgasms, and yet you don’t know how to have orgasms and aren’t sure how to start on the journey. What then?
Some women end up faking in those contexts (I didn’t very often, back in the day, but once or twice I did). Of course, some feminists and sex-positive writers are especially unhappy about this:
I’m sure I’ll offend some choice feminist who thinks that it’s unfair to criticize women who make the totally autonomous choice to flatter a man with a fake orgasm instead of working towards a real one, but I’m taking a stand on this one. It’s un-feminist to fake, ladies!
I don’t advocate faking orgasms, and I actually also don’t advocate dating a man who gets angry and resentful when a female partner asks him to pitch in. (Oh my God, sometimes I have nightmares that I’m back in that relationship, and it’s been years.) At the same time, the idea that screaming “It’s un-feminist to fake!” will fix the problem is ridiculous. It’s the kind of idea that will just make feminists (like, say, myself many years ago) feel even worse about trying to figure out our relationships while not having orgasms. I see, so now not only am I failing to be responsible, I’m also un-feminist? Awesome.
This is not easy. It’s actually really hard. I get that people have to want to work on their sexuality, in order to do it — obviously I get that. But telling people that they’re being weak or self-centered or un-feminist because they aren’t sure how to do it? Or are actively pressured out of it?
Tags: communication, disability, endometriosis, female sexual dysfunction, FSD, guest post, health, language, pain, sex, sexual dysfunction, sexual health
[Dear internet, we have a guest poster today! The following was written by brigid, who wrote me a moving e-mail a few days ago.]
Hi, my name is brigid and I asked K a few days ago if I could do a guest post for feminists with fsd. This is the first time that I have really spoke openly about my pain, ever. I mean it’s not like no one knows that there is something wrong. If the chants of frigid brigid that I dealt with since middle school are any indication a certain ex of mine was blatantly honest with the entirety of the boys locker room that there was something wrong.
So, what exactly is it that is “wrong” with me? My fsd is caused by a condition called endometriosis. Endometriosis is a condition which results in the tissue that lines the inside of one’s uterus to grow on the outside of the uterus, and the surrounding tissues. This can cause the tissues to become inflamed which can result in pain in the surrounding tissues, leading down into the vagina. I also have a condition called allen-master syndrome. This means that my uterus is hypermobile and will tilt at strange angles which creates problems for my cervix, further resulting in pain. So I am basically in pain all the time. It feels like someone is continually stabbing a hot poker into my uterus via my vagina.
Any and all kinds of sexual activity, even those that most people would say are not inherently sexual, result in increase of pain. Any kind of signal firing to my vulva and vagina causes the pain to increase. That means that things like kissing, cuddling, outercourse etc are all off limits to me. Each and every time I try any of those things I end up in agony which doesn’t go away for days and sometimes weeks on end. And don’t even think about masturbation and intercourse. I can’t even touch my vulva most days.
That brings me to the point of my post. A lot of support groups, both on and off the web do not want to recognize women with conditions such as endo as legitimate cases of fsd. We don’t have vulvodynia, vulvular vestibulitis, or vaginismus so we couldn’t possibly go through the same things as women with those conditions. I’m here to change that misconception. The term that K uses for this kind of thinking is the fsd hierarchy. I like that terminology. Because that’s basically what it is when other women with fsd say that their level of pain and suffering is more significant. No one person’s pain is more significant than any others. The levels of pain may be different. The things that one may be able to accomplish with treatment based on the individual and the condition at hand may be different, but we all have something in common. A problem which we can’t talk about. A problem which society tries to pretend doesn’t exist. A problem which for some of us consumes are lives and makes them hard to live. This is something we all have in common. Sexual activity is painful for us. That is something that should bring us together. Turn us into a united front. One which says that we will be treated with respect. One which demands research into ways to better manage our problems. One which supports each woman and encourages her to educate herself about these problems. One which encourages our partners to educate themselves about this. One which will allow all those affected to get an accurate diagnosis and a doctor who knows what they are doing instead of dismissing the pain as “something some women deal with”. I don’t think that that is too much to ask for. We should be striving to break down these barriers. We are all suffering from our problems with our sex lives. Some have it worse than others. Some choose to still have intercourse even though it is painful for them (I admit that I fall into the I have intercourse for more reasons than just it feels good camp) Some choose to be completely celibate, but regardless on your individual decisions, you still suffer from fsd. Our society tries to silence us. By playing the hierarchal game we are allowing them to get away with it. The only way that we as a whole are going to make things better for ourselves is if we talk about it, and encourage others to talk about it as well. By silencing other women who suffer from FSD just because it doesn’t fall under one individual’s narrow view of what fsd is and how it works, we are hurting every woman who needs help. We as a community need to share and embrace our differences. This will allow us to learn more about others and as a direct result about ourselves. So I encourage you today to reach out to another woman with a different type of fsd and talk to her. Share in a mutal discussion about the challenges of your conditions. I think you will be surprised to see how much overlap there really is between us all.
Tags: doctors, experts, female sexual dysfunction, Feminism, FSD, guest post, health, medicine, pain, sexual dysfunction, sexual health, vulvar vestibulitis, vulvodynia
Dear internet, we have a guest poster today! The following was written by Simone, who blogs over at Notes for a Feminist Rebellion.
I’m a twenty-something aspiring mathematician, who roams the internet under the name of Simone Lovelace. I am Jewish, bicurious, and whiter than the day is long. I’m in a long-distance relationship with a wonderful man, and I have female sexual dysfunction.
I’ve had dyspareunia (pain with vaginal penetration) since I first became sexually active. Over the years, I’ve tried a number of do-it-yourself treatments. I’ve gone through gallons of lube, tried increasingly bizarre positions, and switched to all-cotton panties. Nothing worked. Finally, this spring, I decided to see a doctor.
Since then, I’ve visited several medical professional in two U.S. states. I still don’t have a diagnosis, and the treatments I’ve tried have been useless. Right now, I’m not too concerned about this. Dealing with FSD is a process. If it takes me a while to find the right treatment, then c’est la vie.
One of the things that has surprised me most in my FSD journey is the range of attitudes I’ve experienced from my doctors. These have run the gamut from compassionate and respectful to judgmental and mildly sadistic.
Finding a supportive doctor can be a crucial step in managing FSD. On the one hand, dealing with a judgmental doctor can be incredibly painful. On the other, a compassionate doctor can be invaluable—particularly for someone with a condition as complex and personal as FSD.
When I first sought help for my FSD, I was finishing college in southern California, and the on-campus clinic was my only real option. I called up Student Health Services, and got an appointment with a woman I’ll call Dr. H.. Unfortunately, as it turned out, working with Dr. H. was more traumatic than helpful.
Dr. H. was judgmental about my sexual choices, and inconsiderate of my feelings. During my first appointment, I told her about my symptoms, and gave her an outline of my sexual history. Since I was menstruating, Dr. H. couldn’t give me a physical exam that day, but that didn’t stop her from speculating about possible diagnoses. There are a number of conditions that cause dyspareunia, most of which are quite treatable. Some are sexually transmitted diseases, but many are not. Dr. H., however, mentioned only two possibilities.
“Well,” she said, “That could be herpes, or HPV. I’ll have to run some tests.”
I was shaken. It was as though I’d come in with a headache, and been told, “Well, it could be cancer.” An untreatable STD was my personal worst case scenario. I wasn’t worried for myself, so much as terrified that I might have given my boyfriend an incurable infection. We’d always played it safe, but my protection had failed me before. Despite using condoms with every partner, I had gotten a case of chlamydia in the past year.
It’s possible that Dr. H. was simply ignorant of the many conditions that cause dyspareunia, all except HPV and herpes. However, it seems implausible that a doctor would be unaware, for example, that insufficient lubrication causes sexual pain. To me, it’s far more likely that her bizarre behavior was the result of bias.
In retrospect, I’m pretty sure Dr. H. disapproved of my sexual choices. Most likely, she saw me as irresponsible and promiscuous—a “slut.” In American culture, we have an unfortunate tendency to view STD’s as punishment for deviant sexual behavior. Perhaps it was Dr. H.’s whorephobia that lead her to focus on the possibility of that I might have an STD, and ignore other options. And perhaps it was the same prejudice that prompted her to be so cavalier about what, for me, could have been a devastating diagnosis of herpes or HPV.
When I was about to leave, Dr. H. asked me about my positive chlamydia test. I told her that I wasn’t sure how it had happened, but that I’d taken antibiotics, which had cured the infection. Dr. H. responded with a few words of wisdom.
“Given your history,” she said, “the most important thing is that you minimize your number of sexual partners, and practice safe sex.”
Now, safe sex is a good thing. And I don’t think it’s unreasonable to advise someone whose STD status is uncertain to be abstinent. But judging from Dr. H.’s phrasing, she seemed to think I was barebacking with a new man every night. I had already told her that I was in a monogamous relationship, and that I always used protection. Being accused of promiscuity didn’t phase me; what bothered me was being accused of infidelity, and called a liar to boot.
As her comments indicate, Dr. H. used my “history” as an excuse for making wild assumptions about my lifestyle and my physical health. This sort behavior is both immoral and dangerous. A doctor who is busy passing judgement on her patients’ personal lives is in no position to provide quality medical care.
In addition to being judgmental, Dr. H. was indifferent to my pain. She never showed sympathy, even when I was in obvious distress. During our second appointment, she gave me a pelvic exam. Naturally, I found this very painful, and I whimpered a little. At this, Dr. H. asked if the pain was similar to what I felt during sex. When I told her it was, her response was simply “Oh.”
After the exam, Dr. H. told me that everything was normal, and I was free to go. When I asked if there was anything more she could do, Dr. H. responded that painful intercourse was just an issue “some girls have.” She then suggested that my problem could be psychological, and that I might need anti-anxiety medication.
Dr. H.’s claim that dyspareunia was simply a problem “some girls have” was both ignorant and hurtful. It was irresponsible to suggest that I give up hope, just because the exam had turned up nothing. At the very least, she could have told me there was nothing she could do, and referred me to a local gynecologist.
When she dismissed dyspareunia as something “some girls have,” Dr. H. was implicitly refusing to treat the pain itself. There are numerous techniques for managing vulvar pain, from acupuncture to topical anesthetics. But Dr. H. wasn’t interested in treating my symptoms. Vaginal pain, in and of itself, didn’t strike her a something that warranted her attention.
Finally, Dr. H.’s comment about my pain being psychological was absurd. While FSD may have a psychological component, it is rarely a purely psychological problem. Dr. H. had no reason to assume that my pain was of psychological origin, or to recommend psychotropic drugs.
That appointment was the last I saw of Dr. H.. My STD tests, incidentally, came back negative.
I’d like to say that my experience with Dr. H. was a fluke, but I’ve heard similar stories from other women with FSD. It seems that many of us face the sort of problems I encountered with Dr. H.. American culture has highly repressive views about women’s sexuality, so perhaps it’s not surprising that women with FSD have a hard time obtaining medical care. Many doctors are simply uninformed about FSD; others are actively dismissive of women’s sexual issues. Too often, women with FSD must contend with doctors who judge us for our sexual choices; dismiss our problems as unimportant; or tell us that it’s all in our heads.
If at First You Don’t Succeed…
After graduation, I went home to Boston for the summer. There, I paid a visit to my usual healthcare provider, a physician assistant whom I’ll call Carol. In terms of treating my FSD, Carol was not very helpful. For starters, she didn’t give me a diagnosis. By this point, I had done a fair amount of research, and become convinced that I had vulvodynia, a vulvar pain disorder of unknown cause. In particular, my symptoms correspond to a subtype of vulvodynia called vestibulitis. While Carol did mention vulvodynia as a possibility, she made it clear that she knew little about the condition.
Although she wasn’t sure exactly what was wrong, Carol did prescribe some treatments. She gave me a set of vaginal dilators, which I’ve been using daily for the past few weeks, and an anesthetic cream to make dilation less painful. So far, these have proven essentially worthless. The cream burned badly on contact, and any subsequent numbing effect wore off too quickly to be useful. I soon decided I was better off dilating with it. Moreover, I’m skeptical of the dilation treatment itself. I don’t have muscle spasm or vaginal tightness, so why would I need to dilate?
I’m not too bothered by Carol’s inability to instantaneously cure my FSD. Carol is a P.A., not a specialist in vulvar pain disorders, and I didn’t expect her to give me a miracle cure. What I want to stress about Carol is that she was incredibly kind and respectful. During my visit, she was actively supportive in several key ways.
She was careful not to jump to conclusions. Carol took a detailed history, asked numerous questions, and gave me a physical exam. Only then did she begin suggesting possible diagnoses and presenting treatment options. This sort of diligence can be invaluable in any non-emergency medical situation. It’s particularly crucial in treating a complex, multi-factorial condition like FSD.
She took what I said seriously. Carol was never dismissive of my concerns, and she did not treat me with suspicion. Our conversation felt like an exchange, not like an interrogation.
Carol trusted me, even when I said things that didn’t fit the stereotypes about women with FSD. When she asked if I had any negative attitudes toward sex, I responded that I didn’t think that was an issue. I was comfortable with my sexuality, had no moral qualms about intercourse, and enjoyed non-penetrative sex. Carol took my answer at face value and moved on. I cannot overstate how much I appreciated that simple act of respect.
She was open and non-judgmental about sex. Strangely enough, there are still doctors who still blush at the word “vagina.” Carol, on other hand, seemed perfectly comfortable discussing my sexual anatomy.
In addition, Carol avoided expressing any judgement–positive or negative–about my sexual behavior. She showed no disapproval when I recounted my sexual history, and she did not praise me for using condoms. Her focus was always on easing my pain, not on policing my behavior.
Discussing ones sex life with a medical professional can feel embarrassing or demeaning. Due to Carol’s respectful attitude, I was comfortable engaging her in a frank, detailed discussion of my FSD.
She acknowledged that my FSD was a real issue. To Dr. H., my pain only mattered if it pointed to an underlying disease. Carol, however, understood that my pain was a problem in and of itself. She was warmly sympathetic when I told her my story, and proactive about trying to find me a good treatment. I’m not too optimistic about the treatments Carol prescribed for me. Nonetheless, her willingness to recommend treatment options sent a powerful message that she cared about my pain, and was invested in helping me heal.
In a perfect world, all medical professionals would be as genuine, thoughtful, and compassionate as Carol was to me. Sadly, many fail to do so. Sometimes, women with FSD may need to accept disrespectful behavior from doctors, just to get the medical care we need. But I think it’s important to hold our doctors to a high standard whenever possible. It’s important to remember that when we seek medical care, we deserve kindness and respect.
With that, I’d like to open up the discussion to you. Have you seen a doctor for your FSD? Was it a positive experience? Why or why not? What words of advice, encouragement, or warning would you give to women seeking treatment for FSD?
Tags: disability, female sexual dysfunction, Feminism, FSD, guest post, heteronormativity, interstitial cystitis, medicine, pain, relationships, sex, Sexuality, vulvar vestibulitis, vulvodynia
[Dear internet, we have a guest poster today! The following was written by Flora, who provides her own introduction:]
Hi, I’m Flora. I am honored to be a guest blogger here, coming at the issue from a background of having multiple disabilities, which has ultimately resulted in my viewing my FSD as being like any other disability. My views are strongly informed by the social model of disability, rather than by a medical-model approach. (Please remember that the social model of disability doesn’t mean that no one needs medical help, or that many disabilities don’t cause genuine impairment– it’s just that society regards some problems as “normal” and makes allowances for them, prioritizes medical treatment for them, and those problems are therefore less disabling. In any case, what the medical model of disability means, in the language of the disability rights movement, is viewing a disabled patient as a collection of defects and malfunctioning body parts, not as a whole person. Being in contact with this attitude was not good at all for my mental state. I avoided seeking treatment for a long time because the medical tendency to reduce full human lives to collections of symptoms and dysfunctions was so terrifying and dehumanizing.)
I should also mention that an effect of another one of my disabilities is hypergraphia, so fair warning: expect long posts from me. I’ll try my best to not throw in too many extraneous words just for the sake of writing, though.
And, oh yeah… sometimes, I’m angry. Hopefully, everyone reading this should be familiar with the “argument from tone” fallacy. I have a big block of PTSD-related issues to plow through in trying to empower myself and get effective treatment, and I’ve been frustrated by the medical profession and the mental health profession, especially the latter, when trying to talk about this stuff. I’m chipping away at it, very slowly, but long story short, I have a right to be angry about social and medical attitudes towards FSD, female sexuality, disability, and emotional distress, and I can’t always turn my frustration into something you could say at a tea party. It’s not about you, unless you’re a person who actively uses your privilege to perpetuate those attitudes.
I’m not going to go into a lot of detail about when and how I first discovered I had FSD, for now. (I have vulvar vestibulitis and interstitial cystitis, which developed at the same time and which I thought were one condition for years; they seem to tie in with a few other things I experience, which seem to all relate in one way or another to oversensitized nerves sending pain and injury signals when there is no injury. I probably have vaginismus too, although I think that’s inevitable when nearly every single experience of any type of penetration has been painful.) I was 17 and it was a traumatic time in my life for other reasons, and the bare facts of what happened symptom-wise, stripped away from everything else that was going on emotionally at the time, probably sound a lot like many other women’s.
Basically, things that were “supposed” to feel good or at least neutral were painful, and I was feeling every time I urinated like I had a low-grade UTI that never fully went away. My gynecologist couldn’t find any infection, and my family wouldn’t talk about it with me. I found a description in a book (this was over ten years ago) of vestibulitis, and thought “hey, that sounds like what I’m experiencing,” but I couldn’t find any resources specifically about it. I was afraid to look for them out of fear that I’d end up being told it was all my fault and that there was no hope for me. So I spent years avoiding any kind of relationships, and pretending, whenever I could, that it didn’t exist, although, of course, that didn’t make it go away.
But that’s as much of my personal history as I’m willing to talk about for now, other than to say that pain should always be taken seriously and not blown off. What I wanted to talk about was the role of heteronormativity in the diagnosis and treatment of FSD– whose pain is considered valid and why. Like a lot of people in the world, I’m not heterosexual. I guess the best label to describe my attractions would be “pansexual,” but all of my most emotionally intense relationships have been with women. This apparently changes some people’s attitudes towards whether I need or deserve treatment for my pain. It shouldn’t, but it does. So my first post here is about heteronormativity in FSD treatment.
So… heteronormativity is hard to define, but it encompasses a lot of things. Some of the things I can think of that it includes are: assuming that everyone is heterosexual by default until proven otherwise, that heterosexuality is the most normal and natural means of human sexual and relational expression and superior to non-heterosexual expressions, that sex means heterosexual sex and specifically intercourse, and that heterosexual relationships and sex are more loving, meaningful, purposeful, fulfilling, and gratifying than non-heterosexual relationships and sex. And structuring all sexual and relationship advice around this assumption, all medical guidelines, all erotic material, all sexual toys and devices, all views of the path your relationships, sexuality, and life should take.
It also, in my opinion, includes some other assumptions that leave even certain types of heterosexual relationships out in the cold: the assumption, for instance, that everyone is monogamous and that monogamy is natural/superior for everyone, and that all couples are cisgendered and that being cisgendered is superior and the only natural means of expression.
Anyway, that definition out of the way…
The vast majority of the medical profession is very heteronormative. If you are a woman, you are assumed to have a relationship with a man. If you don’t have one, you are assumed to want one. If you have one, you are assumed to be having intercourse, or to want to have intercourse eventually (waiting till you’re married etc). If you say you are sexually active, you are assumed to be having intercourse. And that even if you do other things besides intercourse, you still see intercourse as the “highlight,” as the only real important sex act.
As an example, here’s a questionnaire. There’s a large section on sexual pain. Great– that’s something that’s bothering most of us, right? There are a grand total of thirty questions you can only answer if you’ve had intercourse in the past six months. Very detailed questions about the onset, type, location, etc, of pain. Of the questions you get to answer if you haven’t had intercourse, a high number of them are things like “When did you last have intercourse? How often was your partner’s penis able to enter your vagina? How long have you been able to tolerate thrusting? How often did you experience pain due to intercourse? Are you now or have you ever been a member of the Communist party?” (Sorry. I… use humor to make this stuff more bearable for me, a lot.) And why all the questions about “penile penetration” and “your partner’s erection”? What if your partner doesn’t HAVE a penis to begin with? Then you don’t deserve as much help, apparently– even if you want penetration of some type.
Is anyone seeing the problem with this yet? A woman in a heterosexual relationship in which she’s at least attempted intercourse is automatically going to appear to have “more symptoms” by the test’s measure of it than a woman who has just the same number of symptoms and the same amount of pain, or more, but isn’t in a heterosexual relationship in which she’s attempted intercourse. And will therefore be regarded as more in need of treatment, as automatically deserving of a higher priority, than a woman in a same-sex or asexual relationship, or one who has never had a relationship or attempted intercourse before, regardless of sexual orientation.
It would have been just as easy to replace many of the references to intercourse with references to vaginal penetration of any kind, not necessarily by penis– heck, the first things I experienced my symptoms with were fingers and tampons. The one time I was ever in a relationship with a man involving any kind of regular sexual activity, I knew intercourse was already out of the question, because finger penetration was already much too painful for me most of the time.There’s also a kind of covert heterosexism lurking in the idea that somehow, a woman can’t already have an awareness of her own FSD symptoms and know exactly what parts hurt the most before being “enlightened” to it by penile penetration making her go OW. It might also tie into the sexist/heteronormative idea that women are unaware of their own sexuality or lack sexuality until they’re the target of a man’s sexual attention, but in any case, it’s bogus. I did not need a man sticking his dick in me to be aware of the location and severity of my own pain, and I resent the idea that heterosexuality adds extra “credibility” to my pain that I don’t get otherwise, because I can’t check off any of the many tickyboxes about intercourse on a list of symptoms (and thus appear to be showing “more symptoms.” You want to see “more symptoms?” Do a pelvic exam and watch me yelp in pain, no penises required.)
Then again, the way symptom surveys will automatically prioritize you more if you’re heterosexual may stem directly from the unspoken assumption among many doctors and therapists that the only reasons women ever seek out treatment for vulvodynia are so they can have intercourse, or have babies. During my one semi-long-term heterosexual relationship, I tried to explain to a (male) therapist that I was experiencing pain every time my partner or I tried to put anything in my vagina, even something small. He asked me if I was having intercourse with my male partner, and I said no. His response (paraphrased) was, basically, “Well, why is it a problem, then?”
And this seems to be way too typical, from what I’ve seen and heard elsewhere. That a woman who isn’t in a heterosexual relationship, or any relationship at all, or isn’t planning on having children in the near future, somehow has “no reason” to want to not experience excruciating pain every time she puts something in her vagina, or even rubs the skin around it too much. How about, she might want to use penetrative toys in a relationship with another woman, or during masturbation? How about, she might want to be able to use tampons? How about, she might want to not have to worry, or at least worry less, about wearing certain kinds of clothing, or sitting in the wrong position, or what type of fabric her underwear is made of, or what kind of detergent it’s washed in? How about she might not want to be in pain any more?
You’d think the last one would be the most obvious of all. Would anyone’s attitude change if I flipped the question around when they asked me “why do you want treatment for this?” What would they say if I asked them, instead, “Why do you believe I want to be in pain?” Put the onus on them to answer, to account for why they believe I should be all right with pain as my default– not on me for why I should want to at least feel less of it!
Then again, for all I know, the assumption that I should be expected to put up with the pain might be an extension of sexist/heteronormative ideas, too. Naughty woman, getting into a relationship with another woman? Wanting to put things into your vagina for your own pleasure, not a man’s? Well, you deserve the pain, then! The only thing that should ever go into a vagina is a penis, attached to a man, in a committed monogamous relationship! It belongs to men, not to you! And the only time women should ever have sex with other women is where men can get off to it! It’s no wonder your vagina broke, since you weren’t using it properly, didn’t you read the instruction manual?
(Obviously, I’m being facetious, but it’s actually not too far off from what I was told by my mother– her reaction was basically “Why are you putting things in there in the first place? You put things in there, that’s why it hurts! It’ll stop hurting if you leave it alone and don’t touch it!” She had some issues, yes.)
The amount of misogyny that still runs rampant in the fields of gynecology, obstetrics, and urology, though– sometimes obvious, sometimes subtle– is very disturbing. I probably don’t need to give specific examples. If you’re reading this, chances are you probably have either personally experienced it or known someone who has.
And chronic pain problems in patients of any gender (but more often with women, generally speaking) tend to be blown off and pooh-poohed by a lot of people who will try to convince you that you are just experiencing “normal little pains” that are within the reasonable range of what most people expect to have to put up with in the course of their life, and you, you’re just being a spoiled brat with an entitlement complex, thinking you’re entitled to a pain-free life in a way other people aren’t. Except that most people with pain issues of any kind, by the time they get around to actually having the nerve to ask a doctor about it, have already experienced a lot more pain than most people ever expect to have to put up with as any kind of routine thing, and have probably already been told repeatedly (most likely by people who don’t know much of anything at all about how pain works or how it’s measured) that their pain is normal or just caused by some kind of stress or overexertion, so they should just put up and shut up and stop whining.
I was recently trying to write something about how male promiscuity is perceived, versus female promiscuity, and realizing that it was difficult for me to say anything from my own experience. It’s something I have talked with other people about, with friends, about the idea that only monogamous relationships can be healthy ones, and about slut-shaming and fear of rape making it more difficult for women to have multiple partners or open relationships. The thing is, while I can understand all of this on an abstract level, and have wondered abstractly about whether I want to be monogamous or not, it’s not something I want to experiment with now– explaining to one partner “no, you really can’t touch me here, no matter how much you or your other partners liked it, it really hurts” is hard enough, let alone several partners. I’ve had a few opportunities to experiment with responsible casual sex, but I’ve never acted on them, because I didn’t want to negotiate the explanations, because I was ashamed, because I felt (at the time) that my body was inadequate, because it wouldn’t stop causing me pain. Why would someone settle for me when they could find someone who didn’t have FSD?
I don’t have the sex life I want. I haven’t ever been able to have anything close. And the thing is, the one I want isn’t some porn-movie ideal in which everyone always has explosive simultaneous orgasms from intercourse. It’s got a healthy acknowledgment of the fact that even between normally passionate couples, sex just doesn’t always work out. It can even deal with things like requiring lots of advance notice for penetration of any kind. And I’m afraid that the only way for me to get adequate treatment will be to lie about myself, about my relationships, about what I want, because I am afraid that doctors will not take me seriously when I say “I want treatment”– even if it’s just about wanting to experience less pain!— unless they believe that I have a relationship with a man, who has a penis (no relationships with trans men, everyone knows they’re not REAL men!), and that what I want out of the treatment is for him to be able to put his penis in my vagina so that I’ll feel like a Real Woman ™, the end. Oh, and maybe have babies someday too. That those are the only possible “right” answers.
I’ve heard people say that if men got vulvodynia, it would be taken seriously, and this is probably true, but for both men and women, heterosexuality is still definitely privileged when it comes to who gets taken seriously about sexual dysfunction and who doesn’t, among doctors who even acknowledge it exists.