Misogyny in the NHS stopped me getting help for vulval pain

10 months after being diagnosed with unprovoked vulvodynia and being told emphatically that there was nothing visibly wrong with my vulva, I’ve just come out of my referral with a consultant gynaecologist.

After introducing herself and getting a brief history from me, she got straight to examining me. Prodding around my vulva with a cotton bud, she asked where I could feel pain. I explained (for what must be the 50th time) where the pain is and gritted my teeth through the rest of the examination.

The consultant told me to get dressed and when I sat down she said immediately: “You have an abnormal vulva.”

Hearing those words was honestly the best piece of news I could possibly have hoped for. I have been convinced when I have looked at my vulva with a mirror that things did not look normal. I could clearly see inflammation in the most painful areas, but every time I went to the hospital for my appointments at the sexual health clinic, I would be told that there was nothing there.

The gynaecologist went on to explain that she has been looking at vulvas for 25 years and that mine does not look normal. She said doctors who do not look at vulvas everyday tend not to actually know or understand what normal is, hence the diagnosis of vulvodynia. She explained that the skin condition I have could well end up also causing vulvodynia, and experiencing painful sex definitely contributes to the vaginismus (which I also have).

I don’t think I can really put into words the the anger that exploded in my body at that moment. I have been through doctors telling me anxiety and mental health issues are tricking my body into being in pain. I have been prescribed pain medication that sent me into a state of depression for months. I have been made to feel like I am going clinically insane for examining myself and seeing red raw inflammation that doctors later tell me is how vulvas are supposed to look.

To hear that after 15 months my pain and suffering is most likely vulval eczema which can hopefully be treated in a matter of months with strong steroid cream…is almost more than I have the emotional capacity to cope with.

I have been unable to have sex pretty much full stop for the last 5 months, not taking into consideration the difficulties I was having before and forcing myself to endure. I have been walking around in agony in the wild hope that my “vulvodynia” would eventually disappear.

There is absolutely no doubt in my mind that had I been a cis man, my condition would not have gone undiagnosed for this amount of time. I am disgusted by the way that I have been treated by doctors, who refused to listen to me. I have been passed around professionals who are clearly unqualified to deal with gynaecological issues, many of whom have often had the bedside manner of a square of soiled toilet paper.

Of course the NHS crisis is a major contributor to this and I do acknowledge the immense pressure and stress that staff are under. I will not, however, excuse the misogyny evident in the contempt many medical professionals have had for the pain I have described and how they have examined me, what must be dozens of times, only to repeatedly misdiagnose me.

I feel such a sense of relief that I am crying as I write this: they are tears of fury. Fury at the misogyny that has put me through this, at the austerity that is destroying our NHS and for my own fucked up sex life and hatred for my vulva and vagina that has developed over the course of my ordeal.

I am writing this for anyone who has a vulva: demand to be listened to, trust your instincts and do not let male doctors pass off your pain as hysteria brought on by some phantom female anxiety.

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Vulvodynia Update: What am I Supposed to Do?

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Since my diagnosis of vulvodynia (which I wrote about in April) my situation has unfortunately continued to deteriorate. Each time it has felt like there has been some progress my positive feelings are swiftly shattered. The initial gratitude I felt for getting a diagnosis wore thin very quickly as I came to terms with the mammoth struggle I was up against, particularly at a time when the NHS is as under-resourced as it is.

After having seen the two consultants at the psycho-sexual unit, I started taking my daily 10mgs of amitriptyline. Even at this very low dosage, I immediately started feeling very tired. I decided to stop drinking for the first month or so of taking this medication having read about the extreme tiredness that alcohol brings on in many people who take amitriptyline – this left me feeling quite socially isolated and depressed at first but I thought it was best to allow my body to get used to the medication. Over the next few months the doctor gradually increased my daily dosage until I was taking 50mg per day. Once the dosage had hit 40mg, I noticed that the pain in my vulva had definitely dulled. I was no longer feeling pain when I sat down and the burning sensation was far less severe. The vaginal pain on penetration, however, was exactly the same – I still could not have sex. Despite the dulled vulval pain, I realised that this medication was really not working for me because every time I went on a night out it would get to the point where I physically could not keep my eyes open because I was so tired: I did not feel safe trying to get home at night by myself.

During these long months I slowly lost my sex drive almost completely. The fear of pain and the build up that I would have to go through mentally each time made any sexual interaction incredibly unappealing. What’s more, the vulval pain is unfortunately concentrated most around my clitoris and so I did not even want to touch myself, let alone let my partner. There obviously were some good days when I was able to have a sexual encounter but I generally found it easier to just avoid sex.

The effect that this has had on my mental state is difficult to describe, but I think the best I can do is to say that I feel like the vulvodynia has taken the old me hostage. I used to be sexually confident and happy where I now feel a deep sense of insecurity and anxiety. Even though I obviously have good days (because it would be too physically exhausting to feel how I do on my bad days everyday) I feel like most days I must numbly accept my unhappiness and pain, which I mostly do by filling my days with stuff – lots and lots of reading, talking (probably quite maniacally), doing work, writing, volunteering, going to meetings. I find small talk incredibly difficult in a way that I never used to. I often find myself sitting with people wishing I wasn’t there. I don’t want to make out that I have become some kind of social recluse, I haven’t, but I have become more socially anxious and find talking to certain people hard.

What really does not help is that lots of doctors like to tell me that being stressed can make the vulvodynia worse whilst they simultaneously do not offer me mental health support and say stuff like: “Ohhh poor you, it must be very frustrating. We’ll get there in the end”. After I burst into tears at my last appointment with the doctor at the sexual health unit (I am still confused as to why my doctor is here when vulvodynia is not a sexual health issue but a gynaecological one), he decided that I should start taking new medication, as the amitriptyline was not doing the trick. He prescribed me an anti-convulsant drug (Gabapentin) that is generally used to treat epilepsy.  He told me that some women find that this can help because vulvodynia can make your vaginal muscles spasm and therefore your vagina tightens making penetration difficult. The downside to this medication is I now have to take it three times a day, as opposed to once as I had done with the amitriptyline, and thus far I can report no improvements. On the plus side, I no longer experience extreme tiredness or in fact any other negative side effects. Because of my crying fit, this doctor confusingly told me that I should go back to my GP to be referred for pelvic floor physiotherapy.

I went to said GP appointment this morning and was told to stop reading up on vulvodynia online or in books because overthinking it will make the situation worse. She did not seem to really understand what vulvodynia is (no surprises there) and was making all of the worst assumptions about vulvodynia being a result of my mental health. This made me want to fly out of my chair and punch her in the face but instead I just cried again and tried to calmly explain that the vulval pain has nothing to do with my anxiety, my anxiety is there because of the vulval pain. I managed to get her to refer me for physiotherapy but really she seemed like she wanted to bundle me out of the room.

What am I supposed to do? Wait the 3 months in between my appointments twiddling my thumbs, taking medication that does not help me? Of course I seek out help online because talking to other sufferers of vulvodynia has enabled me to find some respite and some useful information and advice. I feel like I am being passed around between medical professionals in the NHS who are too overworked to care about what I have been going through because I am not dying. It is getting to the point where I feel like I should seek out a specialist privately because this year and a half long process is dragging me further and further from the happy person I want to be.

Something surely has got to change – how can so many women be suffering in the same way with so little support? Waiting lists are at least 3 months long for most services and in between, I am left flailing around unable to speak to most people I know and crying intermittently to my mum or boyfriend. The sad truth though is that without serious funding for the health service, vulvodynia is going to be so far down the list of priorities that all health professionals can possibly do is chuck some medication at you and hope for the best.

Bacterial Vaginosis: One Woman – not the first, not the last, but alone.


Anonymous

The Harpy blog article posted in April is one of a few that have recently caught my attention (perhaps because of my own experience with vulval health) which have addressed the naïvety surrounding women’s sexual health care. Granted, I know nothing about other forms of genital healthcare, or how they are dealt with in clinics, health centres or even by specialists – I can only speak from my own dealings with Bacterial Vaginosis (BV). It’s hard to begin this article after wanting to write it down for so long – where to start?

Maybe I’ll put forward a hypothesis of a cycle – top down, funding for research into women’s sexual health is limited. Funding for medical testing, understandably, prioritises illnesses that affect a larger demographic (cancer, HIV etc.), but it is hard not to be frustrated that, although thrush and BV are ‘common’ conditions, they are much less manageable than the flu (from my experience anyway).

Since there is limited funding for the research which is desperately required, what limited empirical knowledge of vulval health is there for the doctors and nurses to learn? Even the NHS website admits not much is known about BV, for example. Due to this, women often get turned away with a pack of antibiotics and a ‘come back if it gets worse’ kind of attitude. Unless the problem is incredibly persistent, if you’re turned away more than three times say, you’re unlikely to go back for something like BV, which can be at times asymptomatic.

The sexual health clinic, doctor’s and the gynaecologist’s are supposed to be places where stigmatisation is irrelevant, so it can be hugely distressing when there is no clear antidote for such intimate issues, and when the people we often put our trust in are not confidant in their own diagnosis. This leads to the lonely road outside the clinic – apparently one in three women get BV, but I’d only heard about it as a mythical condition ‘you NEVER want to get’ because it makes your vagina STINK.’ Maybe because it is more prevalent for women of colour and, admittedly, my friends are unquestionably a majority of white middle class women, perhaps less of them have had it (as a condition experienced by many black women in particular, I want to refer everyone to the gal-dem article that really spurred me on to write this one, which also addresses how BV is misunderstood in sexual relationships).

I didn’t know it had a name. I didn’t know anyone who had it until I was open about it. I imagine this is because of a combination of the nature of the condition (an embarrassing smell) and the alienation of the professionals that leads women to hide it, which is an incredibly self-isolating reaction that has only ever led to the detriment of mental health.

I was shocked when friends I talked to openly about menstruation, masturbating, sex, sex, sex etc. only ever told me about their BV experience once I, in my unwavering need to talk my issues into the ground, was open about the gory details (which incidentally are not that gory…)

So in the spirit of sharing and finding my ultimate platform to really get to grips with the issues, I’ll just now go into my own story which I hope finds resonance with other people’s experience.

Around August last year, having been consistently sleeping with the same person for a few months, I went straight to work from his house one day after not using a condom (mistake 1), unshowered (mistake 2) and felt a familiar sensation of slight irritation. As the day went by, this became a burning pain. When I went to the loo, I noticed an unfamiliar and alarming – yes, fishy – smell that immediately made me panic. I was working 9 to 6 so couldn’t do anything about it, but I was close to tears by the end of the day. On the way home, I got off the bus because I thought I could smell myself and was embarrassed in case other passengers could smell me too.

At work I’d been going over in my mind what the fuck could be happening to me – I’d been having unprotected sex, which had been a conscious choice because I trusted the guy and was on the pill and knew I was safe from STDs. So, I’d had a bit of discomfort after sex because of his cum, but something had changed this time. Basically I FREAKED THE FUCK OUT –  I might have the unnamed ‘disease’ that everyone said you should avoid. By the time I got home I was on a mission – laptop, internet, ‘what the fuck is wrong with me?’ Answer: ‘Thrush or BV.’ ‘What can i do?’ Answer: ‘Apple cider vinegar’. So, it being the end of a Saturday and not being able to go to a pharmacy or anything immediately, I did the best home remedy that I found online and poured some apple cider vinegar in a bath. This caused some relief, but was the first of a long line of home remedy attempts.

Interruption for life lesson – USE A FUCKING CONDOM.

BV is not an STI but believe it or not there is a pH imbalance between cum and vagina, the former is alkaline the latter acidic and far more sensitive. I think probably a bit too much alkaline ultimately fucked me up. I didn’t really know this was what I had until I went to the sex clinic on the Monday, I was given the antibiotics, reassured that it was nothing ‘more serious’ – as in not an STI – and felt relived that in a week I should be cleared up. Sidenote – this was the first time I had slept with someone for longer than a week so I was pretty excited to say the least, and. as you can imagine, totally bummed out that this was happening, and I think it also began the winding down of this summer tryst – not very helpful for a girl’s self-esteem. Smelly fanny. End of sex – mutually exclusive or cause and effect?

Flash forward – my first bout of antibiotics helped with the burning immediately, but the smell and and inane consciousness of my vagina’s presence was persistent. I then went to the pharmacy and bought some Canesten pH balancing tubes – again, some relief, but messy AF and a faff to insert. I’ve now also used the Balance Activ pessaries AND tubes and a Canesten test to see if you had thrush or BV – basically all bogus. Granted friends have had some success with these, but not lasting. I went back to the sex clinic and happened to see a gynocologist who said it was gone. So I was like, ‘Great I can drink and have sex, woo!’ Wrong. From this point on I was on and off different kinds of antibiotics at least four times – higher dosage, longer dosage etc. Once these were ineffective I explored the internet again for more specific home remedies.

The online presence of women with vulval problems is, to say the least, extensive – especially for BV. Hundreds of women on family forums and chat rooms have shared their experiences and I did not feel any better for it – just far more angry. Some women had been dealing with the condition for decades. DECADES! Some, at this point, had made drastic life changes such as no sugar, no alcohol, no caffeine, or no dairy diets, that may or may not have worked. Very few women would follow up on their hypothesis online and, if they did, it usually went like this: 1) ‘Gonna try [insert insane home remedy such as vitamin C tablets in the vagina] tonight, I’ve heard good things, and I really think it will work.’ 2) ‘First day in and it’s going really well so far, smell’s pretty much gone, I just have funky discharge, I might do a week and stop,’ 3) ‘Guys I’m so upset I stopped using [insert home remedy] and the smell has come back! I don’t know what do!’

Basically all of these ‘remedies’ are totally impractical and any benefits, at risk of further harm, are short term. Some of these I’ve tried, such as the afore mentioned vitamin C tablet insertions (worked for a friend, not for me); garlic cloves inserted in the nether regions at night (worked whilst I used them but so much hassle – no longevity); one brief stint with hydrogen peroxide (highly recommended online – total bullshit, painful and messy); no sugar diet (just boring AF made little to no difference).

What worried me a lot was after finally seeing a proper gynaecologist she didn’t flinch at these obscure and potentially harmful self-treatments. Basically, it means that she couldn’t offer anything better than these experiments. Granted she thought I didn’t have BV anymore (although she didn’t take a swab – hmm…) and actually suggested I might have a kind of reactionary vulvodynia, which I don’t believe I have (although lack of penetration, tampons or otherwise, means I can’t really tell). I was totally unsatisfied with her diagnosis and am frustrated that I’m still dealing with this shit almost a year later after it started. THERE IS SOMETHING INHERENTLY WRONG WITH MY VAGINA! Why can no on see it?

After seeing my GP several times, more blood and urine samples, an ultrasound to check whether there is anything wrong with my bladder since I’d had the sensation of a UTI since contracting BV, (which I thought was part of the condition but might have been a side affect – who the fuck knows) the end is not in sight. I have an appointment with a different gynaecologist coming up soon who I will grill, but apart from just getting used to a dull heaviness in my belly and the knowledge that I am unlikely to let anyone near my vagina again (to subject them to the smell or make it worse) there is not much I’m willing to do anymore.

What I have found valuable over the last year is really getting to grips with the different ways my friends are also suffering – polycystic ovaries and their symptoms, UTIs, chronic thrush, relapsing BV, contraceptive side affects – which are physically and mentally detrimental. I’m terribly sad that despite knowing my friends are very open about their bodies, the complicated and dismissive journey to receive a correct and reassuring diagnosis and treatment is incredibly isolating. Without comparing to those suffering diagnosed mental health issues, the emotional upheaval, however irrational, was extreme. Personally I found it incredibly difficult to get over the crippling self-consciousness I experienced, the thought that I would never find a partner who would not be completely curtailed by my odour, never feeling clean even though I showered everyday, not wanting to get dressed fearing that my clothes would smell, barely having the motivation to leave the house (granted for me combined with moving city and re-entering education) – whilst this sounds over dramatic and self-indulgent a close friend with the same condition and the scores of women present online show that this is not an unfamiliar state. Some individuals admitted they were so self conscious, even with their partners, that if they did have sex (often because they FELT BAD FOR THEIR PARTNER) they would only have sex in the bath or shower. How is it possible that a ‘common’ condition can leave women feeling so utterly helpless and insecure to the point of jeopardising their relationships and preventing them from living daily life?

I wish I could properly pinpoint where it’s going wrong – Patriarchy? I mean women have had vaginas since the beginning of time, so why do they continue to be a mystery? Especially since they GIVE LIFE.

All I can say is I feel privileged to share my experience and that I hope it resonates with some readers, not only to encourage them to share *cheese*, but for others to not be so discrediting when someone wants to open up. Again, I’m privileged that my friends are happy to hear the gritty details of my sexual organs but I also have other friends who have been received with unhelpful reactions – without negating the experience of thrush, having it once, sadly, is not the same as having BV for two years and if you haven’t had it, or vulvodynia for that matter, you probably do not know what it’s like in the same way that I having had BV will NEVER know what it’s like to have endometriosis or polycystic ovaries. BV is just one way of entering the deep dark convoluted realm of mysterious vaginal complications.

I’m not sure I’ve even fully articulated how this last year has been for me, or the incredible online presence of other such isolated women, not to mention that, if this is my experience (middle class white woman in a ‘developed’ country), what kind of situation is it for those where the healthcare systems are few and far between if existent?

Food for thought, if not an argument for some sort of initiative towards better women’s healthcare through research.

Anonymous

OMGYes: Wanking Reviews

 

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Drawing by Ella Milburn

The website OMGYes has combined the wisdom of over 2,000 women aged 18-95 to pull together techniques from the first ever large-scale research about the specifics of women’s pleasure.

OMGYes features a series of different videos where women show their masturbation techniques for you to go away and try out, whether this be with a partner or masturbating alone. Various women were asked to give their reviews of the different techniques to Harpy and rate them out of 5. Here are the results…

ORBITING:

My masturbatory exploration centred on the ‘orbiting’ technique. The idea is that you try a range of circular motions on and around the clit, varying the speed and pressure to prolong climax and heighten pleasure.

I found that gently drawing circles around my vulva was a good place to start as it began to build sensation and increase arousal. Gradually, I narrowed the circles and increased the speed. Whilst it felt very tempting to just continue this pattern until I reached orgasm, I decided to mix it up a bit and started to switch between the small, faster circles and larger, slower ones. This required a bit of self-discipline as I have always found it easiest to come when maintaining one motion. However, the switching between various circular motions built up anticipation and meant that when I did eventually give in and let myself concentrate on my most sensitive spot within moments I was shooting stars!

Verdict:4 out of 5 stars.

I would say this is a good technique to try if you are someone who tends to climax quite quickly, however, the concentration and patience involved maybe makes it unsuitable for the lazy late night masturbator.

Try the orbiting technique for yourself and see whether you can send yourself to the moon!

MULTIPLE:

Two women reviewed this technique and reached very different verdicts.

Person A

As a slightly greedy masturbator I gravitated toward this technique, which essentially means making yourself come more than once. Quite often when spending some time with my loving right hand (or left if the right hand gets tired), I find myself thinking “I can’t wait to make myself come again after this, I’m going to masturbate for hours”, however, in reality after orgasming the first time, I usually feel very satisfied and mostly exhausted. This stops me from continuing to pleasure myself. The times I have persisted it usually takes what seems like days to come again – it turns out I was making some big masturbating mistakes.

The most useful tip I learnt in this tutorial is that continuing to masturbate in the same style as you did before the first orgasm is a bad idea! You need to give your vagina a little rest and then carry on in a style that pays attention to a wider surface area of your labia, as the whole are is really sensitive after an orgasm. Also you have to be careful not to put too much pressure on your clit as it’s all fired up and super sensitive and needs to be treated gently.

Verdict: 4 out of 5 stars.

Unfortunately, when trying this technique I wasn’t feeling very horny so I couldn’t fully enjoy the experience. I was also quite aware that I was thinking about it all a bit too much. Despite this, I really enjoyed learning new things, and I’m looking forward to being a multiple orgasming Mary.

Person B

A firm believer in the phrase ‘the more the merrier’, I decided to choose multiple orgasms. I enjoyed learning about the different techniques but believed there was a definite hole in their investigation. Their research had left them leaning towards a conclusion that overlooked the fact that many women can have multiple orgasms from increased pressure on the exact spot that caused them their first orgasm.

Verdict: 3 out of 5 stars.

Though thorough in some parts, this technique was lacking in others. It was almost like they couldn’t quite put their finger on what was missing.

EDGING:

I’ve tried edging before but I’d always been a little bit too goal orientated in my masturbation to stick at it properly, so I wanted to come back to this technique guns blazing to see if I could achieve a really intense orgasm. The idea is to bring yourself as close to orgasm as possible and then stop, to then build up to orgasm again as many times as possible before allowing yourself to come.

Pause edging = stopping before climax, going back down to zero, and starting again

This is really good, my orgasm was very intense. I initially used my own technique of rubbing my clitoris in circular motions but then I tried what the woman in the video suggested –  one finger stroking up and down the vulva, which was a new technique for me and it felt really nice. Stopping just before climax and going back down to zero required some real self-discipline but there’s no doubt it gave me a much more explosive orgasm. I would love to try this technique out in the bedroom.

Distracting the orgasm away = sudden or intense sensations away from the clit just before climax 

This really didn’t do it for me personally. The woman in the video suggested tapping other parts of your vulva as a way of distracting you from your orgasm but I found this kind of irritating. Stopping all together was much more effective in keeping me turned on.

Continuous edging = get right up to the orgasm then suddenly shift the touch away from the clit to other pleasurable zones 

This is a way that I like to masturbate – focusing mainly on the clitoris with circular motions but just before orgasm switching to other pleasurable zones like inserting fingers into your vagina or involving some anal play. My problem was that I found it hard to stay away from my clitoris because I was so turned on but it did feel amazing when I came.

Verdict:4 out of 5 stars.

I was a bit too impatient for this technique to be something I incorporate into masturbation regularly but I couldn’t stop thinking about how fun this technique would be with a parter. A mixture of the pause and continuous edging techniques would really add something to my sex life and I intend to get out there ASAP and try it out with someone else. I would be dubious to try out the distracting the orgasm away tapping technique with someone else as I think I would burst out laughing if they started tapping on my vagina.

SURPRISE:

I tried this technique with no expectations and was greeted with a surprise ending.

The move goes something like this: ease yourself in, slowly rubbing the area around but not directly on your clit to warm up. Once warmed up, start with slow movements on and around your clit, but the trick is to change technique often to keep the experience of pleasure moving. This is something I tend not to do, but I now find it is good practice not to get greedy with pleasure or focus on the end goal. Playing around with different movements and switching them up to maintain interest and exploration is well worth the end surprise.

At first the ‘Surprise’ technique felt very mechanical; having to remind myself to change the movement after getting used to the pleasure I was feeling required concentration. I then relaxed into switching it up every so often: up and down for ten seconds then left and right for ten seconds then circular movements… I surprised myself each time with the change in feeling that came with the different movements.

Verdict:4 out of 5 stars.

I think with this technique it is important not to get too hung up on what you’re doing or how it’s feeling: just keep regularly switching the move you are practicing. Then followed waves of pleasure which sustained itself and bounced back and forth: a rhythmic drawn out orgasm I don’t often experience..!

RHYTHM:

I was very dubious when I watched the videos describing this technique as it involves tapping rhythmically on the area just above and around the clitoris, tapping fast for 10-15 seconds and then changing to a slower rhythm. On actually trying out the technique, however, I was surprised at how amazing it felt. It built my orgasm up much more slowly and I was so turned on after about 5 minutes of this technique that I found it really hard to not just start rubbing my clitoris furiously. It’s something that I can imagine would be amazing for a partner to tease me with. I hadn’t really considered something so gentle before and was really surprised at how effective it was!

Verdict: 5 out of 5 stars.

I had such an explosive orgasm through using this technique and was really surprised that I had enjoyed it so much, as normally I have to rub my clitoris quite hard and fast to come. I would highly recommend trying out this technique, even just as a way of teasing yourself before you change to a different technique!

OMGYes is a really great resource for women everywhere who want to explore their sexuality. There is a membership cost but you then have access to a whole series of videos and techniques that most of the women asked to do these reviews had never even considered! It also offers good advice for anyone who is in a sexual relationship with a woman – it’s not just about masturbation but increasing women’s sexual pleasure in every capacity.

Have a look at the website here:

https://www.omgyes.com/try-it

Drawing by Iona Wills:

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