In the UK, as in many other developed countries, the state’s neglect of women’s health is a long-running scandal. As many women die of prostate cancer as men die of breast cancer in the UK, yet there is no national screening program for any female-specific cancers. £250 million p.a. is spent by the National Health Service on national screening programs for breast and cervical cancers.
Today I received an email from a young woman, ‘Jay,’ not her real name, concerning her suffering with chronic prostatitis. The Wikipedia entry on the problem is here. Jay kindly agreed to us publishing her story, and it takes up the remainder of this piece.
“I have a female specific illness called chronic prostatitis, often referred to as chronic pelvic pain syndrome (CPPS). The symptoms of this disease are embarrassing and can be debilitating, they can stop a young woman from being able to have relations with her partner, stop her being able to run, lift weights and affect her ability to work because of the pain the condition causes.
When I initially came down with this illness (after an acute urinary tract infection which seemingly ascended to my prostate) I was neglected by doctors and told that I had nothing wrong with me, I was refused a referral to a specialist. I was told by a male doctor that the horrible pain I was feeling was ‘normal,’ he shouted at me and turned me away without help for the pain. When I eventually saw a specialist, she insisted nothing was wrong with me and told me that it would go away when I got a boyfriend (implying the symptoms were psychosomatic and a result of my anxieties about relationships). At this point (at the age of 21) I had been suffering for months with horrible pain and required diagnostic tests which I was refused. I was eventually offered them when I returned, by which point I had been suffering for several months. Letters from these urologists to my GP always indicated I was anxious and that my anxiety was causing my illness, not that the illness was causing my anxiety.
Because of the pain I couldn’t attend my university classes and was thrown out of university. This of course, devastated me. When I attempted to get medical evidence from my doctor she refused to give it to me because I hadn’t yet been diagnosed with an illness. I told her that the pain had caused me to become very depressed but she refused to recognize I’d been suffering with depression, saying I didn’t ‘look depressed.’ When I took my father with me for back up, he told her how I’d been suicidal, to which she callously replied ‘well would you blame me if she committed suicide?’ As if she just didn’t care. It took me nearly a full year to get a diagnosis and get back into university with medical evidence. I’ve now had this disease for four years and have seen other specialists, most of which have treated me like a pest, a hypochondriac and a waste of medical funds.
The disease is confusing for many doctors and is often referred to as a ‘wastebasket of clinical ignorance.’ The go-to drug for this disease is a dangerous antibiotic called ciprofloxacin which is now being flagged by the FDA in America for causing disability. When I refused to take this drug as a prophylactic it was taken as further evidence of my anxieties and status as a ‘hypochondriac.’ The disease lacks funding and research, many women have it all their lives. It ruins young and old women’s lives alike; physically I’m a shadow of my former self because of it. When I asked my urologist why the disease is so neglected she said it didn’t have enough funding for research, when I asked her if she’d help me talk to my local MP about getting more funding to deal with the illness, she stared at me blankly. Many urologists don’t take the disease seriously because they deal mainly with prostate cancer, but moderate prostatitis will seriously affect a young woman’s ability to live her life and makes many women suicidal. It seems many doctors assume that your sexual health is some kind of privilege. Ironically these doctors seem to work in sexual health clinics and urologists’ offices, part of the very system supposedly set up to ensure that you will at least get treatment for problems with your sexual health. People need to know that they may be unfortunate enough have their sexual health destroyed by a simple urinary tract infection and when that does happen there’s a good chance the medical establishment won’t give you much help, possibly even none at a time when you need it most. At the very least it is in the interest of governments globally to address this illness because of the drain it has on health systems and a woman’s ability to work, but morally there should be more of an impetus to help sufferers instead of neglecting them. I’ve spoken to many prostatitis sufferers across the globe (mainly the UK, US and Canada) and nearly all have been neglected to some degree by the medical system, nearly all of them have been drastically let down.
This disease seems to mostly affect younger women (generally because of our naivety in regards to safe sex, although you can get prostatitis from any kind of urinary tract infection, even from regularly riding a bike, or for no apparent reason at all) and yet physicians don’t seem to believe that a young woman in front of them could possibly have problems with her prostate. There’s real double think going on with this illness and going to the medical system for help with this has been like stepping into the twilight zone. Prostatitis sufferers are met with this kind of uniform neglect globally and very little is being done to solve it. Treatments have barely evolved over the past half a century. There is a special type of physiotherapy for CPPS but I know of few people who’ve had access to this treatment through their healthcare systems. Because of this many sufferers are forced to learn physiotherapy techniques and practice them on themselves, a few have had full or partial recoveries because of this, but it is unacceptable that a disease should be so neglected that sufferers are treating themselves when specialists should be doing so.
I think as an anti-masculist this story has some implications for the masculist narrative, masculists insist that women don’t reach out enough and ask for help. During my time with this disease I’ve been flatly refused help on many occasions (especially in the first year of suffering when I needed help most), even when I told my GP I’d been suicidal she wouldn’t give me a diagnosis of depression, but when you have chronic pain in your genitals, quite naturally it tends to spark a deep depression. I am also a compassionate woman and as an Egalitarian. I’m all for dealing with genuine issues men face (genuine being the key word there) as well as women’s issues, but it’s easy to see why a woman in my position would be totally appalled by the ‘ironic’ female tears fad that’s become so popular among masculists, a group of people who claim to fight for equality and justice. I’ve debated with many masculists and I’ve often been told that as a ‘disadvantaged group,’ resources should be devoted mainly (sometimes even only) to men’s issues. So at a time when men’s reproductive health is such a hot topic among masculists, women like me should sit back, fight for men or else shut up? This disease is ruining too many women’s lives for me to be a whipping girl for a movement that cares so little about my wellbeing. This disease has ruined what should be the best years of my life and I’m not willing to pretend that women’s issues aren’t important when other women’s lives are being ruined too.
Luckily I’ve found a fairly caring (and highly qualified) specialist who is willing to help me, but I had to go private to see her. This individual writes papers on the disease and other urological illnesses. When I saw her she told me how I hadn’t had one of the most basic tests to determine the cause of the disease and that I shouldn’t have been discharged and told to just live with the pain. I’m a student and I had to pay over £200 out of my own pocket to see this woman, luckily she referred me to see her on the NHS, but it’s a 6 month wait to have the procedure/tests I need. Again this is unacceptable that I have to pay out of my own pocket to get basic healthcare in a country where basic healthcare is free.
Any woman can come down with this disease, you just have to be unlucky enough – it’s in every woman’s interests to deal with prostatitis. The disease needs research and attention, sufferers deserve help.”