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

https://instagram.com/p/BUbhH3uFMW3/

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