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.

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8 Comments »

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  1. […] had our first Guest Poster here at Feminists with Female Sexual Dysfunction this week. I am always looking for more Guest […]

  2. I’m really disappointed by the treatement your recieved from your sex counselor. I would have hoped that someone in that position would be better educated on the variety of sexual interests and desires! That she judged your sexuality based on assuming that you were a woman and therefore wanted a child leaves much to be desired. I hope that, should you seek the services of a sex counselor again, you find someone more competent to do their job. (I consider their job to be working with you towards your goals and your priorities, and helping you to clarify what you want and how to get it)

    I sympathize with not wanting a child and having that be a concern of everyone else – I will not have children because of my genetic condition (which would both make it dangerous for me and mean that any child of mine would have a 50/50 chance of getting it). (Nevermind the fact that I don’t like babies) And yet, when I attempt to broach the subject of possibly having a partial hysterectomy at age 26, everyone goes into a flutter!

    Just…a note on language? Talking about a male-born man can be very offensive to people who are trans gender or care about someone who is. I believe cis man is the preferred term.

    ~Kali

  3. I don’t know if this would be helpful and I don’t want to be presumptuous, but you mention that you don’t think anyone would want a relationship w/o sex. Some asexual people pursue relationships. If you’re interested in asexuality, http://www.asexuality.org/home/ is a good resource. I’m not suggesting you are asexual, or suggesting AVEN as a dating network or anything, but the variety of people and preferences is always worth exploring and something in your post made me think you may be interested in what other people who aren’t interested in sex have to say. Hope you don’t mind.

  4. […] stats, not so-called experts. The three posts that have been written with the help of others are Guest Post – My Experiences with Vulvodynia and Talking about FSD: Listening to Patients (I call this a semi-guest post because I wrote some of […]

  5. […] 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 […]

  6. […] from a guest poster – the return of Rhiannon, who provided readers with a follow up to her original 2009 guest post. Guest post – the sexual subject – about pleasure and vaginismus, in a culture that […]

  7. i know this post is old, but I think bartholin excision would have cured you !

    • Well in fairness it’s been almost a year and the cyst hasn’t come back yet, so, hopefully it never will again, excision or no.


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