Cystitis is bad enough, says Hannah Fearn. But why are doctors so dismissive?
"Yes, it's just part of being a woman. Don't worry: it'll probably get better once you've had a baby."
If I had needed a reminder that in 2010 we still live in a confirmed patriarchy, here it was. My female GP, for all her years of experience, telling me that constant pain, an almost abandoned sex life, a strained relationship, and the embarrassment of sporadic incontinence, was just part of being a woman. Something to be accepted, something to get used to, something to manage.
This was an answer from what is still, today, the man's world of professional medicine. There may be as many women practicing medicine as men, but its solutions, its research, its focus, are still resolutely male-oriented.
For a decade, since the beginning of my first serious relationship at 18, I have suffered from chronic recurrent cystitis. Statistics show that more than half of all women will have at least one bout of the bladder infection in their life, usually after meeting a new partner or a particularly enjoyable weekend away. It is not by chance that doctors, dismissively, nickname the disease "honeymoon cystitis".
For many women, a short course of antibiotics and a few pints of lemon barley water will do the trick. But for a large minority the mole-hill becomes a mountain: of the 25% who will have a recurrence, half will have a third attack. If you are unlucky enough to suffer a fourth, the statistics become far less favourable - 80% will find themselves facing regular bouts of the infection for a lifetime.
For these unfortunate women the attacks of cystitis become ever more aggressive and frightening. Despite the rhetoric of doctors, this is not a mild disease easily treated by improving personal hygiene and drinking cranberry juice, but a constant battle to manage pain and prevent flare-ups. Unbearable pressure on the bladder, stinging and burning in the urethra, and the passing of blood are all common. It may be as widespread as the seasonal cold, but the experience is incomparable. I have, before now, lost so much blood in my urine that I have passed out, fallen off the toilet seat and onto my bathroom floor, waking in pain and embarrassment and covered in my own excretion.
After three attacks in as many months, a debilitating fear of intercourse with my current partner began to develop. The unbearable pain of cystitis does not erase itself from the memory easily; you will do anything to avoid it. One commentator on an online cystitis forum noted: "After I gave birth to my daughter I thought, 'That wasn't so bad, it wasn't as bad as cystitis.'"
And as sex is the most frequent trigger, my relationship understandably began to suffer. I was already doing everything I could to help myself - popping cranberry supplements like an addict and following all the common prevention tips with religious fervour - so I decided to consult my doctor yet again.
Whatever I had expected to discuss in the privacy of the consulting room, I was totally unprepared for her response. She was asking me, despite medical advances, innovative drug treatments, and increasing experimental use of complementary therapies, to accept that pain and fear of sex was part of the lifecycle of the women. What was I hoping for? Advice from the latest clinical trials, a referral to a specialist at best; empathy at the very least.
If cystitis were the scourge of young men between 20 and 30, and again a problem for those embarking on their retirement, would it remain under-researched and under-resourced?
Instead, I got her solution - the solution of the male-dominated world of public healthcare in today's Britain: stick it out for now, it'll get better after childbirth. Any suggestion that as a citizen passionate about the right to choose, and that I may not intend to have children, was immediately discarded. I am a woman and women, after all, have children.
Later, my own investigations revealed that precious little academic or clinical research has been carried out into the management and cure of recurrent cystitis. The trials, which mostly tested the efficacy of regular use of cranberry supplements compared to long-term antibiotics, were relatively small-scale and judged by peer review to be poor in terms of reliability. Little has been done to monitor the increasing resistance of E-Coli (the most common bacteria to cause recurrent cystitis) to the mainstream antibiotics prescribed to women like myself, who will have to manage the problem throughout their lifetime. One trial into a potential E-Coli vaccine in the US produced promising results in mice, yet human trials are still in the very early stages. Without the interest of the major drug companies, it may take decades to bring it to market. Even if it succeeds, it is possible that it will only be available privately, at cost, and inaccessible to the poorest sufferers because antibiotics, in the eyes of the medical patriarchy, do the trick more cheaply - if less effectively.
Cystitis is not life-threatening, but as the Cystitis and Overactive Bladder Foundation states, it is "life limiting". By failing to commit research funds to the management of this biologically simplistic condition, the medical profession is condemning hundreds of thousands of women to lives of unnecessary misery.
This is a disease that not only inflicts physical pain but has a devastating emotional fallout; it tears at relationships and destroys sex lives. Above all, it is a female complaint. Would a simple ailment that attacked the male body, interfering with the ability to have unfettered sex, go unchecked for so long? If cystitis were the scourge of young men between 20 and 30, and again a problem for those embarking on their retirement, would it remain under-researched and under-resourced?
For repeat sufferers, increasingly virulent attacks are treated with increasingly potent - and in turn increasingly resistant - antibiotics. By failing to carry out further research and constantly relying on antibiotics to treat regular, often monthly infections, we are storing up major problems for our young women. As resistance grows, such drugs may be rendered useless to regular cystitis patients, who are then left unable to resort to these treatments if and when serious complications occur in later life.
Before the development of antibiotics, young brides were known to die of kidney failure shortly after marriage. Today are lucky to live in a more medically advanced society in which cystitis is, literally, a pain and not a life-threatening condition. But while we fail to demand better research into the common diseases which blight women's lives, we are still living in a socio-political dark ages. In 2010, it should not ever be an acceptable, let alone professional, opinion to consider constant discomfort and a painful sex life "just part of being a woman".