Vulvar pain in women of color

02/01/2011 at 1:59 pm | Posted in Uncategorized | 2 Comments
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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.

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Book review – The Camera My Mother Gave Me

08/31/2010 at 6:29 pm | Posted in Uncategorized | 3 Comments
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[Trigger warning for rape]

The Camera My Mother Gave Me is both one of the easiest and hardest books I have ever read.

Years ago, shortly before I received a tentative diagnosis of vulvodynia by my main gynecologist, I started looking for support and information about what causes vulvar pain. The Camera My Mother Gave Me is one of the earliest books I read about the topic. At the time, it was one of a very few books available that talked about vulvodynia with any amount of detail. Most of my other sources were scientific & peer reviewed medical journal articles or anecdotes from the internet. What sets The Camera My Mother Gave Me (henceforth I shall refer to it as TCMMGM) apart to this day is that unlike informational resources that talk about treatments, it is a memoir. It’s a first-hand personal recollection of author Susanna Kaysen’s life with vulvodynia over about two years.

Yes, you read that right, the author is Susanna Kaysen – this is the same author made famous for her previous memoir, Girl, Interrupted, which was made famous by Hollywood – though I understand the film distorted the facts in the name of artistic license. However, I have not read Girl, Interrupted and will not be talking about that today. Whether Kaysen’s experience with psychiatry in the 1960s has anything to do with her vulvodynia later in life, I cannot say.

So, TCMMGM is both an easy read and a hard read for me. How is this contradiction possible?

It’s easy because it’s short. It’s only about 150 pages with paragraphs double spaced. If you’re interested in reading it, it probably won’t take more than a few hours to finish; maybe a day or two tops. Kaysen uses everyday language instead of heavy academic jargon, so you don’t necessarily need to be a doctor or be familiar with vulvodynia in order to follow along.

But it’s hard because every time I read it, for all the progress I’ve made and improvements I’ve seen over the years, I am instantly transported right back to square one – that daunting, hopeless, barren place where the walls of pain obscure every available path. It’s hard because when I read it, I remember everything… the questions unanswered, the ignorant doctors, the uncertainty …the pain. I’m in my early 20s again and I don’t know what’s going to happen to me.

Another reason this book is so hard for me because no one understands this book unless they have vulvodynia. Perhaps I’m not giving folks enough credit. Perhaps that’s an exaggeration… but not by much. TCMMGM has received mixed reviews, many of them negative. The negative reviews usually contain some variation of gross-out due to TMI or frustration with Kaysen’s lack of progress in treating her pain medically. It’s TMI and gross because vaginas and vulvas are generally considered vulgar and gross – at least outside of feminist circles – sometimes even within feminist circles, because don’t talk about vaginas too much or else you reduce yourself to a big walking vagina – and thus it’s a shock to read such frank language and descriptions about the vagina. Frightening, too, to have to think about an area that’s supposed to be capable pleasure feeling instead only pain. If readers are frustrated with Kaysen’s lack of progress, that may be because Kaysen herself was frustrated and was deliberately trying to convey that feeling – trying treatments she felt comfortable with, avoiding the ones that she didn’t want but that were nonetheless pushed upon her over and over again. When she opened up about her vagina and all its problems, Kaysen also left herself open to invasive personal questions, “Why didn’t she do this, why didn’t she try that.” If the book feels unresolved at the end, that’s probably because vulvodynia is itself a chronic problem, often with no clear resolution. There are still loose ends by the time the book ends, because in Kaysen’s real life the struggle with vulvodynia was ongoing.

So what’s the book about?

The briefest answer is to say that it’s about Kaysen’s vagina. One day, mysteriously, “Something went wrong with it” (3.) Everything else follows over about a two-year period.

A more comprehensive answer is to say it’s about Kaysen’s experiences during a time when she had to re-evaluate her relationship and sexuality as she navigated the gauntlet of modern medicine in search of answers for her debilitating vulvovaginal pain.

Kaysen began experiencing vaginal pain that “Felt as if somebody had put a cheese grater in it and scraped” (3.) The reasons for this pain are never made 100% clear. We learn that Kaysen had a bartholin’s cyst surgically drained some 20 years earlier, and the pain felt intense at the surgical site – but the pain radiated to other areas of her vulva as well. She was approaching the age at which many women enter menopause (though I could not tell what her age was when the pain started.) Her gynecologist initially misdiagnosed Kaysen with a run-of-the-mill infection and prescribed some treatments that probably didn’t do any help. At some points, Kaysen explores the possibility of psychosomatic causes.

This pain interfered with her everyday activities like “Wearing pants” (8), “Taking a bath” and “Too much driving – it hates that” (146.) She maintains a pain diary, measured on a scale of 0-5, with her pain frequently hovering around a 2 and sometimes spiking above 5. She had good days and bad days.

The pain interfered with her sex life, to the point where her sex life and her relationship with her own body fundamentally changed. Very early on, Kaysen tells her gynecolgist,“Listen, I said, everything’s getting worse. I’m really having trouble with sex. My vagina hurts all the time now. If I have sex it hurts more, but it never doesn’t hurt” (9). Unfortunately an expanded definition of “Sex” did not adequately address Kaysen’s problems:

“I tried a lubricant named Astroglide that was more glue than glide. My boyfriend and I tried all sorts of varities of sexual activity: very quickly, so it wouldn’t have time to hurt; without moving, just in there; only fingers in there; nothing at all in there, only outside. Whatever we did, it hurt” (10).

She was not even able to enjoy arousal in and of itself, because “Just getting aroused hurts” (55).

When her pain first manifested, Kaysen visited multiple doctors specializing in different fields. She lived in Boston at the time, which is home to some real-life vulvovaginal specialists. She visited her gynecologist, an alternative medicine practitioner, an internist, a vulvovaginal specialist, and a physical therapist. Some of these doctors pass her off to other doctors – notably, when her primary gynecologist was stumped, Kaysen felt that he was “Washing his hands of me! After twenty years” (9). She was tentatively diagnosed with vulvar vestibulitis and tried multiple treatments – conventional western style and alternative – but none of them were right for her. Kaysen was acutely sensitive to side effects, and in some cases the side effects just made things worse. Even physical therapy, a treatment that I had very good luck with, only set her back farther. (Having a crummy physical therapist who ignored her wishes probably didn’t help.) Other treatments, notably surgery, she did not want to try, though the doctors and her boyfriend pushed and pushed.

The doctors left Kaysen with a lot of unanswered questions about vulvar pain…

With her gynecologist:

So what is it? I asked him.
I don’t know, he said

But what is it? I asked him. What’s wrong with me?
I don’t know, he said.
(9).

With the internist:

But why does it hurt all the time? I asked. Why does it hurt when I’m not having sex? When I’m sitting on the sofa?
I don’t know, said Doctor Matthew
(21).

With the vulvar specialist:

Why did this happen? I asked him.
Eh, he said. He shrugged.
What is it, anyhow?
Eh, he said. He returned to the stool and resumed his Q-tip (28).

What’s the matter with me?
You have a sore spot, he said
(30).

WELL THANK YOU, CAPTAIN OBVIOUS!!! A sore spot! Of course! Why didn’t Kaysen think of that?! That explains everything!!!

*headdesk*

It goes on like that in some fashion over the whole book. Just as it continues to go on day after day in real life for still all too many women.

[Trigger warning for rape]


Kaysen’s nameless boyfriend was not sympathetic to her situation or open minded about the kind of sex he wanted. For two years prior to the events described in TCMMGM, Kaysen and her boyfriend had enjoyed a sexual relationship. Her partner had a strong interest in sex – “It was one of the things I had loved most about him” (95), though they never say “I love you” to each other. But when sex hurt, Kaysen began to lose interest in sex. While they stayed together for the first year that she looked for treatment, the boyfriend nagged and coerced Kaysen to have sex with him – even if it meant she was performing against her will. Readers of this blog would probably recognize what Kaysen describes as rape. She didn’t say no, she acquiesced under pressure, but certainly she stopped giving any kind of enthusiastic consent. She spends days after sexual activity coping with the painful after effects. Kaysen herself never uses the word rape to describe what she went through with her boyfriend, even when it caused her to disassociate during the act and left her in physical pain for days afterward. When asked by a biofeedback specialist if she had ever been sexually assaulted, she answers “No,” but when the question is rephrased to “Have you ever had sexual relations against your will,” Kaysen says “Yes” (82). When she recounts the last straw to her friend, Kaysen questions herself, her boyfriend’s actions, her own fear at the time, and what actually happened.

[/TW]

Even after evicting her boyfriend, Kaysen continues to feel pain long-term. It wears her down over an extended period of time. “Low-grade pain is debilitating in a subtle way” (121.) Eventually she loses interest in sex, and this is a painful experience for her, but in a different way. When Kaysen talks about sex and eros, it’s clear to me that prior to these events, she really did enjoy sexuality in her life. For her, it was a source of unpredictability. At one point, after throwing her boyfriend out of the house and struggling to rediscover pleasure from what once felt only plain, she tells a friend, “When eros goes away, life gets dull. It’s as if I’m colorblind. The world is gray” (125.) She eventually decides that the best course of treatment is to stop treatment. Eventually she makes a limited, partial recovery… But by then her relationship with her vagina, vulva and her own sexuality are fundamentally changed. Maybe forever.

Kaysen’s language may be plain and easy to understand, but it’s not without criticism. She uses frequently the word “Vagina” even though a more accurate word is “vulva.” Or maybe it is accurate for her to describe her pain as vaginal, since with vulvodynia the pain can radiate and spread beyond the vulva. In practice, when the pain feels like it’s everywhere, it can be very hard to pinpoint. One social construction argument against female sexual dysfunction as a valid diagnosis is that women with sexual problems may not be educated enough to understand their own anatomy; however Kaysen demonstrates that she is aware of her own anatomical structures and function.

Overall though, I would hope that readers accept Kaysen’s idiosyncrasies and simplified language. She uses other inaccurate terms, most likely as deliberately as she chooses to forgo with quotation marks when recalling conversations. She refers to her doctors as the “Vulvologist” and the “Biofeedbackologist” instead of as “The vulvar specialist” and “the physical therapist.” But when you’re encountering these specialists for the first time, perhaps not knowing such fields even existed before, what else are you supposed to call them??? The title of the book itself is an error. The title is based on Kaysen’s memory of a scene in a movie, with some artistic license exercised. (According to this interview with Kaysen about TCMMGM, technically the title of the book should be The Camera My Father Gave Me.) She receives materials from the “National Vulvodynia and Vestibulitis Association” instead of National Vulvodynia Association. And so on…

But this is her story in her words. I hope we can forgive her for taking liberties with some of the language – though it does have some disableist moments that are questionable and perhaps not so flexible.

I don’t know if Kaysen ever found relief for her pain in the years since TCMMGM came out, though it seems unlikely. Around 2003, the following was written about her on Salon.com:

Though she lives in the Boston area, the doctor capital of the world, Kaysen never found a workable medical treatment. Today, Kaysen hasn’t so much lost or won her battle; rather, she’s signed a treaty, with massive concessions. “Celibacy is a great cure!” she said wryly in a recent phone conversation. “I wasn’t interested in having sex again. The only thing I was interested in was not having pain. Pain eclipses desire.”

So who might be interested in reading TCMMGM? Who might benefit from exposure to such a taboo subject and who should approach the book with caution?

If the reviews online are any indication, many readers will be disappointed and frustrated with the book, but a few will strongly emphasize with what Kaysen went through. I am one of those people, and would like to see more people read and attempt to understand Kaysen’s situation. The frustration that so many reviewers are left with may be exactly what readers most need to feel, to better understand the frustration that still too many patients with vulvodynia have to deal with when running the gauntlet of modern medicine in search of adequate treatment.
The book is a memoir of one woman’s experiences with what is probably vulvodynia, and therefore it should not be taken as an advice or how-to book. This is all stuff that happened to Kaysen. It’s not necessarily going to happen to you. Some readers with a history of vulvar pain may find the book depressing because at so many points, things appear hopeless. Others take comfort knowing that they are not alone. It’s been a few years since the TCMMGM came out too, so there have been some advances in treatment since Kaysen conducted her own research and treatments. Your mileage may vary.
TCMMGM is short and small, but it’s not light fare. Although it has moments of dark self-deprecating humor, it’s not something to read if you want to feel good (except perhaps through schadenfreude.) It’s kind of a downer, to be honest. Because Kaysen describes a rape and post-rape scene with frank language, the book may be triggering to those with a history of sexual assault.
TCMMGM is available online from several retailers and it is available in E-Book format for Kindle. If you’re still interested after reading all this, then may I suggest that you make a purchase through the NVA’s book list, since they have a referral program set up for financial support.

As with all reviews conducted at Feminists with Female Sexual Dysfunction so far, I had to pay for TCMMGM with my own money, and I receive no compensation for posting a review of it.

The Dr. Oz vulvodynia video link

01/13/2010 at 6:50 pm | Posted in Uncategorized | Leave a comment
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Just a quick update to the vulvodynia on TV related posts: Dr. Oz’s website finally uploaded the video about vulvodynia, so if you’re still searching for it and winding up here, follow this link, it’s what you’re looking for.

If you’re still interested in reading my summary & analysis of the video & an article accompanying it, that’s still over on this blog. I have also added the video link there. Thank you.

Chaser Image – Candy that sort of looks like a vulva

12/09/2009 at 8:14 pm | Posted in Uncategorized | 5 Comments
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Let’s lighten the mood a bit – I found these pieces of candy that sort of look like vulvas. Or maybe I’m just projecting my own thoughts onto them. I’m not censoring the images because these were sold as-is in little see-through boxes at a candy store, so if it’s good enough for the candy shop it’s good enough for me.

These are maple syrup candies, so they’re basically pure sugar. If you’re on any kind of restrictive diet (low-oxlate, anti-yeast, etc.) these probably won’t fit in. The lighter and less detailed of the two pieces is blended with cane sugar. The darker & more frilly piece is pure maple sugar. They both taste sweet and have a texture like dissolving sand.

And here they are together.

Am I seeing something that isn’t there? I was about to eat these two and went, “Waaait a minute… what am I looking at here?” The other pieces of candy looked like snowflakes and random yet symmetrical designs.

Guest Post – My Experiences with Vulvodynia

12/01/2009 at 7:20 pm | Posted in Uncategorized | 8 Comments
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[Dear internet, we have our first guest poster! The following was written by Rhiannon, who has volunteered the following background information: “I’m a white middle-class cis-gendered presently able-bodied Kinsey 2.” She lives in the United Kingdom and is studying for her Master’s degree. She can be reached at rhiannon (dot) book (no space) geek (at) gmail (dot) com.]

My Experiences with Vulvodynia

It was January of my second year at university. I’d got reasonable grades the previous semester, despite a bout of tendinitis in my writing arm; I wanted to get my life sorted out a bit. I’d been dating a [Edit Aug 2010] male-born cis man for a bit over a year. I was also tired, after many years, of menstrual periods so heavy that sometimes I’d be immobilised by cramps for two or three days. Sometimes the pain was so bad that I vomited.

“See a nurse about the contraceptive pill!” advertised my GP’s surgery, so I saw a nurse. She took my blood pressure and prescribed a common form of the pill.

I spent the next month bursting into tears every five minutes. I wanted sex emotionally, but my body wasn’t interested and it started to hurt.

When I went back to the nurse, she did change my prescription, but also suggested that being a bit hormonal was normal and that all I needed was some lube.

To cut a long story short, I spent a long while trying different forms of the Pill, and also trying to work out why sex, which had never been a problem before (at least not since my first time, about a year prior to this point), was suddenly so painful. After a while, I took to examining myself very closely, and eventually discovered a sore looking red spot.

At first I thought it must be herpes – my partner at the time occasionally got cold sores, and although I’d never had one on my mouth or anywhere else, and we’d not really experimented with oral sex, I thought that was the only thing it could be.

I took it to the doctor, who couldn’t explain it and suggested we took some swabs in case of infection – the swabs, of course, came from deep inside the vagina, since nobody believes that vulvas have problems.

The tests came back negative. I found another matching sore spot on the other side – the site of what, I would later learn, was my other Bartholin’s gland. My GP referred me to a specialist.

The specialist’s assistant examined me, and suggested that I might have thrush (I didn’t; I’ve had thrush before, I know what it’s like, and I also know what my normal discharge looks like. This would have been quicker if I’d been listened to.) Despite the fact that I’d already been tested for an infection, I was sent home with an antibiotic cream and instructions to come back if the problem persisted.

It persisted. I went back.

We tried hormone creams, which didn’t work; and lidocaine gels, which work as topical treatments if I want to have sex (though it’s deeply annoying, since I need twenty minutes’ warning of any penetration event), but doesn’t work as a long-term numbing.

The twin soreness of my Bartholin’s glands remained. I was offered steroid or Botox injections into the site of pain, surgery, or physiotherapy. Being averse to invasive methods, I opted for physiotherapy.

(It was also suggested that I try coming off the pill. I did, had two months of worse-than-ever period pain, and went onto the POP. I now take a double dose of Cervazette, a practice which very few GPs have heard of, but works for me – it not only clears up the periods, but also the PMT.)

I saw a very kind physiotherapist three or four times in total; she concluded that my muscles were quite strong anyway, I concluded that doing any kind of exercise twice a day was more distressing than any pain (there’s another long story here, about the word ‘exercise’, my childhood experiences with PE lessons and my teenage mishaps and illnesses, and the male-centred physiotherapist I saw about my arm the previous winter), and we parted having agreed that she couldn’t help.

(As an aside, she claimed that she mostly saw young women with the problem, and not middle aged women. She concluded that it mostly resolved itself; I concluded that if you had it, you’ve give up sex, and that middle aged women were more likely to have accepted it and/or not regard it as abnormal and not be seeking treatment. She also claimed that many women found the pain lessened when their partner – always assumed to be male – didn’t wear a condom; I found that it was worse if he didn’t. This suggests that the difference is largely psychological in at least some cases.)

The only other non-invasive treatment I was offered was massage or dilation. The theory here is that if (and this seems to be unproven so far) the problem is caused by an overgrowth of nerves in the area, then it might be helped or cured by convincing the nerves that touch shouldn’t equal pain, i.e. overstimulating them until they give up.

(I’m going to skim over the long discussions we had about potential treatments for vaginismus, because that is a muscular reaction to pain, which I do not have. No medic appears able to believe this, but that doesn’t mean I have it.)

I thought hard about dilation, and attempted massage for a couple of days. In the end, I found the idea of causing myself pain on a daily basis for months if not years to be distressing far beyond the distress caused by giving up sex entirely (my relationship with my partner was falling apart anyway; we are still friends), and decided to reject further medical treatment – it would have been difficult to continue because I was moving, but I don’t want to give the impression that I have simply failed to seek more treatment. I actively decided that treatment was worse than the disorder.

I don’t expect to have any further sexual relationships. I am not seeking them; sex is too difficult to face. I don’t think most men would tolerate a sexless relationship, and having never dated women yet I haven’t the nerve to come out as an involuntarily sexless bisexual.

Since if I leave my vulva alone it is mostly painless on a daily basis, at the moment I’m coping by simply living with the issue. I don’t aim to ignore it entirely – I wouldn’t be writing this blog post if I were – but the options for treatment seem so distressing and/or so extreme that going through the process of seeking treatment in a new city doesn’t seem worth the trouble.

This leaves me in an odd, middle-ground position with relation to feminist opinions of FSD. On the one hand, I’m glad that I was able to seek treatment, that I was eventually diagnosed with vulvodynia, a physical if poorly understood condition, and that there were medical routes open to me.

On the other hand, I found the medicalisation of my sex life difficult to deal with – in the end, I was dreading trying to have sex, and tried to only do so the weekend before an appointment because I knew that a doctor was about to ask how it was. I dread to think what the reaction would have been if I had admitted to seeking treatment for this condition while single; there was no opening for the possibility of non-straightness or non-monogamy. It wasn’t until I saw the final doctor, a sex counsellor, that anyone asked whether my relationship was good; even then, the focus was on returning me to a fit state to have penetrative sex and babies. (When I finally took a deep breath and said, “I don’t think I want to go on with this, I have no motivation to cause myself pain every day,” the counsellor replied that other women often went through with it because they were trying to have children. Fair play to them, but she didn’t ask whether I wanted children.)

Throughout the process, I was never examined by a male doctor. I did see one – the expert consultant was a man – but he seemed curiously reluctant to examine me, preferring to have me comment on rough sketches of a vulva. Those who did examine me rarely did so twice; even the physiotherapist only checked me once, I presume because having admitted to only doing one set of ‘exercises’ a day and not two, I wouldn’t have made any difference worth checking.

I was never pushed into taking drugs I didn’t want, and nobody seemed interested in selling particular brands; perhaps this is an effect of the NHS, which will always favour the cheapest solution. The contraceptive pills I took were all free to all women in any case.

My present position is that the key thing is choice and knowing about all the options. I have no objection to women having access to, say, a drug which can raise sexual desire, or decrease abnormal pain during penis-in-vagina events. It is oversimplification to assume that all women are pressured into accepting such treatments by their male partners or doctors; equally, treating sex as a purely medical phenomenon with no social dimension misses much of its joy as well as its pain.

This is a complex issue, actually composed of many issues about women’s pain, sexual desire, social assumptions, medical views, technological possibilities, etc. I’d like to see a little more acknowledgement of this in feminist discussions.

The post 20/20 vulvodynia discussion

08/08/2009 at 3:14 pm | Posted in Uncategorized | 11 Comments
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Last night, August 7 2009, the US television program 20/20 ran an episode of “Medical Mysteries” including a segment on female sexual pain disorders. The day before, August 6, Good Morning America also ran a shorter teaser segment on the same. It’s a pretty big deal since, it’s still a taboo to talk about sex frankly & openly in the media, especially when things don’t go as expected. Vulvar pain & painful intercourse have appeared on television before, but only very rarely, and not without well deserved controversy & criticism. The 20/20 episode was one of the few times where this sort of pain was addressed. Even more rare, the interviewees were actual people, not just made-up characters.

If you missed any of this, or want to see it again, here are resources. I don’t know how long these will stay online.

20/20’s site – the program’s main page
20/20’s video segment – the video in question
20/20’s article, Sex Pain: Millions of Women Have It – you can leave comments here too
Contribute – this is where to go to contact ABC directly about the 20/20 episode
Good Morning America’s site (the teaser preview video featuring Dr. Tim Johnson was embedded there as of 8/6/09)

Now that the show has aired, there’s a couple of things we can address. What comes to my mind first,

Once again, for some reason, the actual terminology for these pain conditions was not used. At no point were words like, “Vulvodynia,” “vaginismus,” “pudendal neuralgia” used. Related, overlapping conditions sometimes found in conjunction with vulvovaginal pain were not addressed in detail, including but not limited to, interstitial cystitis, fibromyalgia, and irritable bowel syndrome.

The omission of specific terminology is strange and awkward to me. One of the women interviewed, Chris Veasley, is the NVA’s associate executive director. Dr. Andrew Goldstein said that the pain conditions have a name, but it was not spoken aloud.

The program talked about what must be vulvodynia & vulvar vestibulitis, without actually using the words! I don’t understand why – Sex & the City used the words, so too did Private Practice. The 20/20 article Sex Pain uses the word “Vulvodynia” only once, to link to the NVA. Why does it not appear more frequently in-text?

Why do we not speak the words? In fantasy & science fiction stories, speaking a true name either gives or takes away power from the person or object being talked about – but in real life it doesn’t work that way. Speak the names! Speak, “Vulvodynia,” not, “She-who-must-not-be-named.”
Are you reluctant to speak the words on national television for fear of backlash by conservative groups & individuals? Is sex & sex pain still that much of a taboo? What is the reason?

The pain was described as vaginal, which, is technically incorrect at least some of the time – vulvodynia & vulvar vestibulitis happen in the vulva & vestibule (although you can certainly experience true vaginal pain too, or exclusively.) But why use “Vaginal” pain as a descriptor instead?
That mix-up happens a lot though in general – “Vagina” will be used where “vulva” is meant. I will forgive Susanna Kaysen for using the word vagina interchangably with vulva in her memior, The Camera My Mother Gave Me. But it is critical to point out the correct location of pain, for proper diagnosis, treatment, and description.
How many women will write off this episode as irrelevant to their very real pain, because thier pain IS vulvar rather than vaginal?

I do not agree completely with one of the women, Allison, who said that “Part of being a woman, is having female sexual organs, and when they’re not working properly, it’s kind of an assault on your ego as a woman.” I’m not completely comfortable with this statement, because not all women are born with female organs, recognizably female organs, still others will not have “Normal” female organs, and because not all women feel bad when their parts are not working as expected. It is not a requirement to feel an assault on your ego, when something is not going exactly to plan.

Still, I recognize, that in US culture at least, female sexuality is marketed & taught in such a way that it makes it very easy to feel bad about it, when you do not or can not live up to the arbitrary standards set up by the environment you grow up in. I know that. I feel it. I’m struggling with it. How do I reconcile my limitations and abilities, when the kind of sexual performance I see depicted as valued, is so often far out of my reach?

I would have liked to see a little more about how the vulvar pain spills out into other areas of life, although this was mentioned superficially – biking, wearing tight pants, sitting, walking… sometimes these ordinary activities are hindered by the pain. It’s sexual pain, yes, but it’s so much more than that. It can be pain that is there, whether or not there is any sex going on at all. It is chronic pain. It is vulvar pain. It can interfere with social activities, recreation, exercise, and work – to the point where you can no longer do any of these things.
All three of the women interviewed had been in long-term heterosexual relationships. We did not see the perspective of a single, nonwhite, queer, or senior woman.

This segment was 8 minutes long. That’s nowhere near enough time to cover all the material available on vulvodynia, vulvar & sexual pain disorders. I have no doubt that there is enough material available to make an entire hour or even two-hour long in-depth documentary. Perhaps as a result of this, ABC had to focus on only a few topics, but that meant that the show also only scratched the surface. Three common causes for vulvovaginal pain and three types of treatments were talked about.

I am one of the women who experienced all 3 types of the most common causes of pain and tried all three interventions mentioned in the TV show.

I was diagnosed while I was still on birth control pills, and a hormonal blood test revealed that my hormones were all out of whack. I went off of the pills and used a topical hormonal gel, and a follow up blood test showed the hormones were back to within normal range for a person my age. That gel helped a little, and I will not use hormonal birth control again.
I have/had poor pelvic muscle strength & functioning, and am addressing that with physical therapy. This helps a lot.
I took the surgical route (which is not named for what it is, a vulvar vestibulectomy,) to remove the borked out nerve endings in my vestibule  and that made a big difference, but I still needed that physical therapy to address the muscular issues. The surgical option may not be right for everyone, and success rates can vary depending on which scientific study we’re reading, and who’s personal anecdote we are hearing.

However, other treatments were not mentioned including but not limited to, topical lidocaine, oral antidepressants or anti-seizure medication, diet and alternative medicine. There’s more than three options available, and what works for one may not work for another.

These are but my thoughts on the program, and should not be interpreted as the only ones. There is much-needed discussion going on about the program elsewhere online and in the support groups.

So, still controversial, even after all these years. Perhaps the next program – and there had damn well better be another, as I cannot imagine vulvodynia disappearing altogether in the near future, much as I would like to see that – will be able to learn from the discussions taking place online. Keep the good parts, make adjustments where the criticisms are. Listen to the feedback!

I am glad to see this type of pain being discussed in the open.. but I want more. I want so much more.

MOAR.

New V book arrival

06/13/2009 at 2:54 pm | Posted in Uncategorized | 2 Comments
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Look what I just got!

I know you’re all jealous now.
(Probably not jealous of my nails though – I could really use a manicure.)

Female Sexual Pain Disorders: Evaluation and Management. You can get a feel for what’s going on in here thanks to Google Books. Careful, some of the pages available for preview are not work safe.

I know I probably don’t need it. I’m a patient, not a doctor. I’m not in school anymore. Why am I buying a $120+ text book even though I am not in school? This has nothing to do with my major. This has nothing to do continuing education to further my career. This probably isn’t an inherently feminist book.

Yet I have a thing about collecting books that deal with sexual pain, particularly vulvodynia & related conditions. I have spent quite a pretty penny on out-of-print books before, just because they were on the NVA reading list. I want to know more. I want to know what’s available in the media. I want to know what doctors know. I want to know what regular people can know. I want to know what sources are being cited, so that I can find & then use those sources myself. God forbid if something new happens to me, I don’t want to be taken by surprise.

I haven’t read the whole thing yet so I cant give in-depth review or give any hints as to whether or not it would be of use to laypersons.

My initial impressions:

  • The book has many photos & illustrations, yet most of the information is written down. Still text-heavy.
  • I recognize a lot of the authors’ names. I’ve seen these doctors names get mentioned on the support communities & some have written other books. Yet some conspicuous doctors are missing. I wonder why that is?
  • There are a lot of chapters. Lots of ground to cover, including but not limited to:
    • Irritatable bowel syndrom (IBS)
    • Interstitial cystitis (IC)
    • Endometriosis
    • Hormones
    • Pudendal Neuralgia
    • Vaginismus
    • Vulvodynia & vestibulodynia
    • Treatments
    • MORE – you may want to check the Google Books link since it lists the table of contents.
  • These chapters are detailed & dedicated to each topic of interest. However,
    • The chapters are all short, just a few pages long.
  • The chapters all have a lot of footnotes & citations. I’m thinking if you wanted to get even more detail on a topic covered in a chapter, it might be worthwhile to investigate the sources cited.

So no judgements yet about how “Good” it is. I’m just excited about having it. I’ve got some high hopes – so let’s hope it does not disappoint. In any event, another refernece to add to my home library.

Post articles about vulvodynia

05/27/2009 at 7:31 pm | Posted in Uncategorized, vulvodynia | 3 Comments
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Hey guys, you want to see a recent article on vulvodynia? It’s full text & it’s free!

A practical approach to vestibulitis & vulvodynia

Careful, it’s not work-safe (but then, I suppose few things about vaginas are…) It’s even got pictures.

I don’t want to copy & paste the entire article so instead, let’s have a bulleted point list. Chances are, if you’re reading this blog you may already be familiar with some of what is being rehashed here anyway.

But if you’re not familiar with this topic, then well here’s your chance.

Couple of noteworthy points –

Article breaks out V into 3 kinds: cyclical vaginal infections (recurrent yeast in particular.) Vestibulitis (pain with penetration) and essential Vulvodynia (more generalized pain.)

I still tend to use “Vulvodynia” as a blanket term which includes vestibulitis.
However, technically speaking we’re supposed to start moving away from the “-Itis” suffix in “Vulvar Vestibulitis,” since, that ending implies inflammation. Inflammation was present for me, but it’s not present for every patient. Instead some doctors are moving towards using the phrase “Vulvar Vestibulodynia.” I’m probably going to continue with the -itis though, since I’m more used to that phrase.

This article cites a 16% rate of some type chronic vulvar pain in female patients in Boston. That’s around the same numbers I’ve seen before. That’s not necessarily a 16% rate of diagnosed vulvodynia, just those reporting chronic pain.

I disagree with the headline that says “Medical treatment is ineffective” re: vestibulitis. It’s kind of a weird headline anyway since I always thought that the vestibulectomy was a medical treatment. The only thing I can think of is that the authors consider surgery to be a category of treatment unto itself, separate from “Medical.” Maybe the authors mean “Medical” as in, oral medications?
But then why not mention the oral tricyclic antidepressant approach for vestibulitis? It’s mentioned further down re: treatment of vulvodynia – maybe the authors of this article have concluded that tricyclics work better on vulvodynia rather than vulvar vestibulitis?
Also, the article mentions that steroids don’t usually play out too well as a topical treatment… but why didn’t it mention topical hormones? It’s mentioned as a treatment for older & post-menopausal women, but, I’m a young lady & I used topical estrogen gel for awhile.
I also disagree with this headline because ouch, what a kick in the teeth to women with vestibulitis who would very well benefit from some medical intervention. Surgery or bust just isn’t fair.

The authors note that vulvodynia is more likely to happen among older women, although in practice I’ve seen it among women the same age as I & younger. In practice I’ve also seen resolution take much longer than just a few months for vulvodynia. The authors sound pretty optimistic.

For some reason Physical Therapy is not mentioned as a treatment in this article at all. I find that to be a glaring omission. “Where’s the beef Biofeedback?!”
Dietary changes & avoiding irritants are likewise not mentioned. Alternative treatments like acupuncture & chiropractic is not mentioned.
Sex therapy is missing. Maaaybe this article isn’t really the best place to bring up sex therapy since, the article focuses on typical medical treatments. I don’t think that sex therapy be a good option for myself but the authors could have mentioned it as an option to expand a patient’s sexual horizions. Intercourse does not necessarily have to be the end goal of treatment, which is kind of implied with the patient used as an example at the beginning & end of the text.

The authors do not examine possible causes much.

Some of the sources cited in the footnotes are on the older side. I’m familiar with several studies though; I’ve printed out & read several of these. The Goetsch study in particular comes to mind. I’ve seen statistics in other subsequent studies hover around the same incidence rate numbers that Goetsch came up with so I guess the repeatability makes it a fairly strong research paper. Still, I’d prefer to see a stronger emphasis on more recent work.

So it’s not perfect, it’s missing some things, but it’s still an article on a website so maybe somebody with a medical degree will actually pay attention. Or even a layperson who never heard of such things before.

Maybe…

The miscellaneous hazards of pubic hair

12/19/2008 at 10:30 pm | Posted in Uncategorized | 8 Comments
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Pubic hair periodically comes up within feminist circles. Discussions about it fall in & out of favor.
Well, recently, a Salon.com article titled “Is Bush Back?” made some waves. Once again discussions about pubic hair & feminism are contemporary.

A brief summary of the article is, the author was told about “Shave the Date,” a tongue-in-cheek personal celebration for now-President Bush’s departure from Washington. The author points out that this isn’t as Hip & Cool as it may first sound – pubic hair is making a comeback. Barenaked vulvas were popular in pornography & in society in the last two decades.

(I know I could walk into any of several local salons and get a bikini or a brazillian wax right now if I wanted to – although if I felt so inclined, I’d probably be choosy about which one to patronize! But it’s right up there, on the menu.)

But lately more hair is sneaking in. It’s more socially acceptable to have a bit of a hairy bush.

I found it rather interesting that the author pointed out a connection between economics & shaving patterns. She suggests that women groom more during boom economic times and less during recessions, such as the one the globe is feeling right now. Intuitively, it makes sense. When the economy is booming, people have more cash to spend on luxury goods & services, including beauty treatments. During downtimes, those luxury treatments are the first to go. On television and in comic strips, I’ve heard jokes about families resorting to cutting their own hair. On the sitcoms, this can end in hilarious disaster.

Perhaps some of this regrowth is in direct response to feminist analysis of pubic hair.

I don’t know if most feminists feel this way or if it’s just a vocal minority, but the loudest voices that ring most clearly in my ears are the ones that say “Never shave, trim, or shape your pubic hair, because doing so is a symptom of the patriarchy. You’re only doing it because the patriarchy tells you to. You only want to look that way because porn stars do it. You want to look that way because men like childish, immature looking women. Real women wear pubic hair.”

Livejournal may not be the end-all, beat-all feminist location, but we can see some discussions of feminism & pubic hair here and here. I’m sure you’ve seen some elsewhere, as well.

Unfortunately, once again I find myself feeling alienated by these most vocal feminists. I never really like feeling like my choice is never my own, even when I am fully aware of the repercussions of whatever choice it is I am making. That’s how I feel when it comes to feminism & pubic hair though – we must constantly question our choices. We can never be certain that we fully know ourselves, because of our socialization & gender roles.

It’s a real bummer if you ask me. If I don’t shave my pubes, then on the one hand I may have to defend this choice against macho men who have been socialized & conditioned to believe that a shaven vulva is inherently better than an unshaven one. (In practice, my own boyfriend does not seem to hold this belief – or if he does, he’s smart enough to keep it to himself!) But on the other hand, if I do shave, then I have to defend this decision against vocal feminists who tell me I am feeding the patriarchy by bowing to the peer pressure.

However, I also once again find myself in a unique position to point out a few shortcomings of arguements about pubic hair.
My answers are probably unusual. The most common responses re: shaving probably do fit the bill nicely for most people. Other feminists have done a good job of addressing the most common concerns re: to shave or not to shave, for example we have one vocal radical’s points and another newbie-friendly blog presents a couple of different points of view on the matter.

But I am constantly reminded…
I am not most people.

I’m actually one of the lucky ones. Most of you readers are probably lucky ones, too, and don’t even realize it. I actually have the option to manage my pubic hair.
On one of the support groups I’m a member of, some women have written that their pubic hair, in and of itself, causes a lot of grief & there isn’t much to be done about it. Some women with vulvodynia have vulvar pain so bad that they describe not being able to allow anything to touch thier pubic hair. Even warm water in the shower can’t fall directly onto the mons. Swimming is out of the question, due to the chemicals in a pool. Not that swimming in the ocean would be much better. Some women can’t tolerate the force of water pushing the hairs around.
It really does happen.
My heart goes out to these women. Shaving, waxing, trimming, and sometimes even wearing pants, isn’t even an option for them. I can’t take the vulvar health I do have for granted.
Yet, for others, managing pubic hair can actually be a way to manage vulvar discomfort. Everyone is different – it’s possible to have vulvodynia & feel a little better, either physically or emotionally or both, with minimal pubic hair.
I can go either way. I can leave it in place or I can manage it. In practice, I do go both ways.
I am so grateful to be able to go either way.

At this point, I can’t remember the motivations I had when I first started shaving my beaver, about age 15. I believe it was something along the lines of “Let’s try something new & see if I like it.” I found that I actually did like the rewards, so I maintained for awhile. It wasn’t really comfortable or pleasant. I have a lot of pubic hair so it took a long time. Looking back, perhaps the uncomfortable burning sensation I experienced when some of the supposedly bikini-safe shaving gel dribbled into my vestibule, should have been taken as a big fat warning sign of times to come. I wonder if it’s like that for everyone. How would I know?

I only had crappy disposable razors for a long time. Then I became aware of better, more long-lasting, more comfortable razors that felt less scrapey on the skin. Now you can get razors marketed for women that have 4 & 5 blades at once. I wonder if some of the push towards barenaked vulvas in porn & photography came from having better tools become available, which required less swipes of the razor. One swipe did the work of two or more.

Unfortunately over time, the discomfort I had with shaving gels increased. It might’ve been the vestibulitis acting up, or it might’ve been simple annoyance. There’s no use denying that managing pubic hair requires time & care.

Last year, I picked out a nice electric razor. I can’t shave with a regular razor & foamy gels anymore. I don’t want to risk getting the irritating shaving gels in my vagina. That means by extension, hair dissolvers like Nair are out of the question, too.
But with this new electric razor, I can shave my mons if I want to – among other things. I really enjoy working with it. I can use it outside of the shower, which means I don’t have to rely on gels to act as a buffer. It does not seem to cause me any pain in & of itself.

Electric razors can be a bit of a trick to find. They aren’t marketed towards women so much as men, and when I was shopping around for the perfect razor, most of the advice I heard was you get what you pay for.

Often, when I don’t feel like shaving, I still prefer to trim my pubic hair with a pair of safety scissors.
I’ve seen the question raised, “Why would you want to take sharp objects to your vulva just to get rid of a few hairs?”
A good question, indeed…Except that, I had vulvar surgery. The doctor already took a scalpel to my vulva.
It doesn’t really get much sharper then that.
An electric razor or a small pair of safety scissors by my own hand, is pretty unintimidating after that.
Been there, done that. Wrote the blog.

It may be worth noting here, that when I had my surgery, after I was put under but before things got started, I had to be shaved. I was instructed to not shave for a few weeks prior to surgery, in order to let the hair grow and also make sure there were no ingrown hairs that could become infected.
Not all of my pubic hair was removed, just the ones that were in the way of my vestibule. I am not sure if hygiene had anything to do with the surgeon’s decision to shave me, but I’m sure it made things easier to see.

I am certainly not afraid to look at my vulva. This surgery I had wasn’t cosmetic in nature. My vulva wasn’t ugly before and it’s not ugly now – although I do like the way this one looks better, because of what it means to me. It does look different – now when I look at my vestibule, I do not see so much redness & sorrow.

I like to check on my vulva at least 2x a day, mostly out of habit. I like to check in on it to make sure everything is within the range of normal. Discharge, odor, color, amount of smegma buildup, level of irritation – all must be within an acceptable range for me. If something falls out of range, I worry. Is it a warning sign of pending infection?
I do not know what will happen if I develop a vaginal infection from now on. I fear I may relapse or have a flare-up. I don’t know if my checking habit will be able to prevent infection from happening, or if it will let me get early treatment. But I take comfort knowing that I am trying to baby it & keep it happy. I’m trying.

I have enough pubic hair so that it does get in my way when I need to check my vulva. So having minimal pubic hair makes things easier to see. More light gets through to my vestibule, I have less hair to push & pull out of the way. It is less obscured.

I’ve had some issues with my pubic hairs in an of themselves causing me some discomfort.
Once in high school, I had an awful, painful experience with clitoral pain. It came on suddenly & I had to run funny for the cramped ladies room stall.
I was practically in tears in discomfort, hunched over the toilet and digging around my vulva trying to figure out what was wrong. It took me several minutes to find & remedy the problem.
It was a pubic hair.
It had gotten stuck under my clitoral hood.
I wasn’t shaving at that time. Sometimes I did and sometimes I didn’t – in this particular instance, I was letting it grow out for awhile longer. I had a whole bush going.
And a hair still got stuck in my clitoral hood.
And it was poking me and scraping me.
It was a trick to pull it out. Who designed these ladies room stalls? I had a hand mirror that I used, but there wasn’t much light to see what I was doing.
I felt immediately better after I got it loose, but I was somewhat irritated for the rest of the day.

This has happened a couple of times, whether I’ve shaved or not. I have a few hairs in an unfortunate position. They like curling up in such a manner that they pokes my clitoral hood if I let them grow long enough. When I do shave or trim I must be careful to rinse off well.

But since it happens whether or not I’ve managed my bush, pubic hair under hood seems to be a case of “Damned if you do, damned if you don’t.”

A counter argument that sometimes comes up, in favor of managing pubic hair, is that it makes having your period more comfortable, thanks to less mess.

When I’m menstruating, I still can’t use a tampon, so I can’t just plug it up & go about my merry way, mess-free. I freak out when I try to insert a tampon (even though I can use dilators fairly comfortably,) so it’s not really practical to tell me to use a diva cup or sea sponge.
So, I still use pads. I’m actually in the minority at this point – most women use tampons.

Tampons and pubic hair get pretty messy on the peak flow days.

One vocal feminist answer to pubic hair getting tangled by blood is, “WIPE. Deal with it!”
Which most of the time, probably for most women, is perfectly fine & effective.
However, in my experience, wiping does not get all that blood off. There’s still a residue of brown crust to deal with later. The menstrual blood itself is somewhat irritating to my vulva, as is this residue. It’s not terrible but it’s enough to notice.

And if you are so sensitive to touch that even soft toilet papers feel like sandpaper on your vulva, “Just wipe it” isn’t very good advice.

I don’t feel comfortable using disposable moist towelettes or baby wipes on my vulva either, because I don’t want the ingredients (usually including some combination of alcohol and/or fragrance,) going near it.

Personally, I prefer to, minimize the hair that gets tangled in the first place, by trimming… and then address the rest by Rinsing.

I live in the US, so bidets are a rarity. I have never in my life encountered one.
So in order to rinse the blood off, I have to use a few cups of warm water, or have a nice sitz bath, or take a shower.
Cups are in short supply in all the pubic bathrooms I’ve ever used.
I’d be embarrassed to lug my big ol’ sitz bath basin around in public (although I DID do it once – related to the surgery, again.)
And I can shower once a day or thereabouts, but doing more then that takes extra time & isn’t practical.

So even my favored approach to removing menstrual blood, the rinse, isn’t perfect. 8+ hours a day while I’m at work, rinsing is a bit of a trick. Theoretically it’s still possible.

I’ve heard tales of women sneaking mini squirt bottles into the rest rooms with them, if thier purses are big enough or if their pain is bad enough. When I hear these tales though, it’s probably not just the blood that’s irritating, but also the urine itself…
When you have to take a squirt bottle into the restroom with you, it’s usually because you don’t want to have to take a squirt bottle into the restroom with you. Sometimes I take a water bottle around town with me so I can drink when I’m thirsty. I’m reluctant to use the same water bottle to rinse off my vulva. I’m a little squicked out by the fact taht the bottle has my mouth germs on it. And once I run out of water, if I need to refill it in public, I’d have to leave the stall I’m in, fill up at the sink, and then go back into the bathroom.

So with regards to the clots of menstrual blood getting tangled in my pubic hair… for me it makes more sense to me to just, not let that happen in the first place. Or to minimize it as much as possible.

There is one other, somewhat more unusual but completely practical application of managing pubic hair.
And that is…
…Having a lot of pubic hair makes getting accurate readings on biofeedback machines a little harder.
…Biofeedback, in case you didn’t know, is another perfectly legitimate treatment for pelvic floor dysfunction, including but not limited to vaginismus, and sometimes for vulvodynia, bladder control, etc.

When you have a lot of pubic hair the machines will still give a decent reading. They still work. However, according to my physical therapist, having a lot of pubic hair where the electrodes need to go, might influence the readings. It makes sense – are the sticky electrodes attached to your vulvar & anal skin, or to your vulvar & anal hair? If it’s the hair, they might wiggle around with your every movement.
Unfortunately, I’m one of those people who has enough pubic hair so that it influences the biofeedback machine. Not enough to make biofeedback worthless, but it’s causing some interference.

For example, this was the case at my most recent biofeedback session. I let my pubic hair grow out somewhat, thinking I could still get away with it. But during therapy, my readings were getting screwed up. There is no way my tensile strength is THAT high for THAT short a length of time (a fraction of a second) and there is no way my relax state is that uneven. My readings, when the electrodes are properly applied, are usually much more stable then that! I’d been keeping up my exercises at home, so I can’t say I slacked off & got weak. It’s not supposed to look that jagged!

I reached down & felt the electrodes. They were partly stuck to me and partly stuck to my pubic hair. Which is a real bummer because the therapist tried very hard to get the electordes to stick properly. It just kind of worked out that way this time.

Having all that pubic hair makes removing the sticky electrodes a little uncomfortable too – tug, tug, pull, pull… Oops one pubic hair just broke off me now. So much for letting it grow out = no ingrown hairs…

Of course, someone confronted with this anecdote may, in a great huff, tell me,”Well then just shave off the hair that’s in the way & leave the rest alone!” Or perhaps, “Deal with the slightly inaccurate biofeedback readings!” Or, perhaps the worst thing you could possibly say to me would be “Oh but that’s so rare, it’s so weird, that doesn’t happen to anybody ever.”

Meh, I like the way this looks & feels better. I already started managing it in one area, may as well finish the rest of the job. That way I can see how the skin is holding up on my mons too. And yeah the biofeedback readings are still okay, but I’m so curious now to see if we can make them look more level without the hair in the way. And please don’t say that last thing to me. FSD is not as uncommon as you may like to think, and biofeedback can be a non-invasive treatment option for some forms of it, among other things. It makes me feel like I don’t matter when you say things like that.

I will never tell you whether to manage your pubic hair or not. I will never tell you what is the best choice for you, because only the individual can make that decision. I will never take that choice away from anyone, and I would very much appreciate it if no one took that choice away from me, either, in the name of the greater good.
After all – I’m know how lucky I am to have that choice.

Don’t forget about that.


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