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.

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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