A Range of Participant Experience
'I am 43 yrs old and have been experiencing cystitis type problems for 25 yrs.' (Abby).
Visitors to the site who disclosed their ages range from 13 to 65 years old and, although most women live in the UK, women from Ecuador, Canada and Australia have contributed to the discussion. The duration of disease ranges from a year to several decades. Frequency and severity of symptoms also vary considerably with some women reporting 'a serious attack about once every two or three months' (Beth) compared to others who suffer from 'constant pain' (Cara). Many of the women report a progressively deteriorating illness with increasing frequency of symptoms.
Site users often describe a long history of recurrent UTIs. Most have received many years of conventional intervention, mainly antibiotics delivered as short or long term prophylaxis. Cystitis is commonly associated with sexual activity but several women report a history of UTIs that stretches back to early infancy. By contrast another group of older women report symptoms beginning with or being aggravated by menopausal hormonal changes.
The following key themes emerged from an analysis of the website.
Symptoms That Don't Live in the Textbooks…
'It's so depressing - I don't get 'simply cystitis- that infectioin (sic) that seems to only live on in text books!' - I get vile infections that are really hard to shift. I get shaking and shivering, terrible diarrhea, waves of nausea and generally end up losing about half a stone when I get an attack' (Dora).
Women described far broader, more diverse, systemic, and disabling symptoms than those described in the classical medical literature, i.e. frequency, urgency, burning and lower abdominal pain. These include feeling ill and having persistent widespread discomfort:
'I'm feeling quite 'fluey' at the moment, and having spasms around my waist and up my back, there is a 'knot' above my pubic bone in my bladder and the pelvic floor doesn't feel right at all. My legs are killing me, and there is also some stabbing in my right hip' (Eva).
Notions of causality also differ considerably from the standard medical model. Several women, in the absence of cultured evidence of bacteraemia, subscribe to little understood, non-pathogenic (according to current understanding) bacteria such as ureaplasma, as the cause. Some women associate their cystitis with acute or prolonged episodes of stress, lack of self-esteem, or 'guilt/shame': 'my chronic BC was definitely triggered by my emotions….. Once I got to grips with the effects of negativity from my past the infections stopped' (Fiona). Women understood these emotional influences as being mediated via damage to the immune system or via rather nebulous concepts of 'inflammatory hormones'.
'I'm Finding This Affects Every Aspect of My Life' (Emma)
For women using this website it is apparent that RUTIs have a far greater impact on the quality of their lives than is commonly acknowledged in the medical literature. Even relatively mild symptoms of frequency and urgency can disrupt sleep, create anxiety, and lead to persistent fatigue. Knowing that intercourse can be a trigger for an infection can undermine intimate relationships: ' It (cystitis) only ever happens after intercourse and has left me terrified to have sex, this illness has ruined numerous relationships for me' (Gabby). The impact of cystitis on sexual relations is a much-discussed theme on the site. In total 73 women have made over 122 postings to the discussion 'cystitis and sex', which has received over 36,342 viewings and is the most commonly viewed topic within the forum. Those who maintain sexual relationships with the background threat of UTIs, report on their reluctance to have intercourse and describe how negative associations can be made, with infection leading to one woman being ' quite disgusted with sex' (Harriet). Even with an understanding partner, this can threaten long-standing relationships: ' My husband is very understanding, but I'm extremely depressed by the fact that we can no longer be intimate without weeks of pain afterwards' (Issy).
RUTIs can also disrupt other areas of a woman's life with many reports of enforced periods off work with financial and social consequences: 'The UTIs have taken a huge toll on my sex-life (and therefore my relationship), work, social life and finances (Abby)'.
For those who are not in paid work the impact can be equally traumatic: 'I am a mother of four, and currently have no interests or hobbies due to being in so much pain all the time' (Kate).
The prospect of a UTI also creates anxiety about future plans, with women expressing their concerns about being able to attend a daughter's wedding, to go on holiday, or to enjoy an approaching honeymoon. It is hardly surprising then when Lizzie exclaims: 'I just want to be normal again!'
'Each time I have come off the a/bx the symptoms return' (Maria).
Many of the women using the site described extensive experience of antibiotic use. There are 37 separate topics with a heading relating to antibiotics on the forum. Resistance to these drugs appears fairly commonplace among these women, as Naomi describes:
'Over the years I have used many different antibiotics, some times to clear infections and for a period of about 6 years I took them when we had sex as a preventative. However I am now resistant to many of these drugs'.
Even when the drugs work symptoms often return fairly immediately:
'Antibiotics dont seem to help much now, helps a little at the start but seems to come back just as quick when its chronic, and also now more reluctant to take long term antibiotics' (Olive).
When antibiotics are successful they can be transformative as Jenny expresses: 'long term antibiotics have allowed me to get my life back on track'. However for those women whose symptoms respond to antibiotics there is considerable anxiety about the prospect of resistance developing; 'I also worry that I will become resistant to this too and then I will be left without an antibiotic which works for me' (Petra).
On the website, attitudes to antibiotics range from disregarding them in favour of alternative remedies to a more conventional view insisting on the need for antibiotics as a way of preventing a more serious kidney infection.
Women express a number of concerns about antibiotics including anxiety over side effects, fear of them not working, anger both over their being 'dispensed like sweets' or in relation to their perceived role in aggravating long term bladder conditions. Anxieties about side effects include immediate concerns about nausea, thrush, and diarrhoea. More long term concerns centre around the potential impact of antibiotics on the immune system: 'I spent months on antibiotics, which I think knocked my immune system even more, and made it easier for the next infection to come along!' (Rachel). Thus some women perceived a negative cycle in which an infection triggers antibiotics, which provide temporary relief but then make them more likely to contract another infection.
Several site users report on conventional treatments used in addition to antibiotics. Urethral stretches are the commonest of these interventions. Some women report positive responses: 'I had a cystoscopy and a urethral stretch… I do still suffer from recurrent cystitis but I have to say it hasn't been anywhere near as severe as any of the bouts I had in the past' (Susan). However other women report short-term benefits that do not stand the test of time.
'Does anyone else out there have any other, herbal or alternative therapies' (Olive).
Concerns over effectiveness and adverse effects mean women on the forum show considerable interest in other conventional treatments and in Complementary and Alternative Medicines (CAM) including dietary and lifestyle changes and acupuncture and herbal medicines. Typically women may use several different therapeutic modes that are combined into a complex CAM intervention, as exemplified by Rachel's approach:
'I've been seeing an acupuncturist since September, who's helped a great deal, especially with the pain and frequency. I've also seen a nutritionist, who put me on a diet with lots of supplements, including large doses of vitamin C and cranberry tablets, which really helped make me stronger. I've also found washing with tea tree oil helps. I have to avoid spicy food, caffeine, sweet fizzy drinks and most alcohol'.
Within the forum there is considerable diversity of views expressed about CAM. For some women CAM therapies have not been helpful:
I have tried pretty much every alternative thing under the sun:waterfall d-mannose, reflexology, homeopathy (inc the tincture you mention), various "miracle promising" supplements. The only thing that has been remotely successful for me has been a long term course of antibiotics' (Vicky).
Women described using CAM interventions in conjunction with conventional antibiotic treatment (e.g. to alleviate the side effects of antibiotics, or by 'strengthening the immune system' to help prevent relapse) or as an alternative anti-bacterial approach (eg herbs such as uva ursi or cranberry). Incorporating CAM appears to offer some women a greater sense of control and empowerment, and led them to consider the possibility of a deep and permanent 'healing' to address the multifaceted aspects of RUTIs, as opposed to temporary disease suppression:
'The key is to get the body to heal properly, that takes alot of time and alot of focus. It is layers of healing - so sorting out IBS, the bladder, the gut, it all takes a long time to re-balance. Using alternative therapies mean that you feel more confident when twinges come on and you feel more in control, as you know you can treat them herbally and you don't have to take anti-biotics' (Wanda).
Doctors: Heroes and Villains
'A urologist a few years ago (I had no faith in him at all) asked me about my hygiene, I felt like hitting him!!' (Yasmine).
Women expressed quite polarised views towards their doctors. Some describe them as 'unsupportive' and 'dismissive', often ineffective and at worst unsympathetic and uncaring. 'my doctor's useless as well, he just sais (sic) "its normal for women to get these infections" well what use is that to me' (Hilary). Other women describe a lack of care and understanding of the severity of their experience that may be exacerbated by gender differences between patient and practitioner: 'I had had a bad experience in the past of a GP who refused to prescribe me anything until he (of course it was a man!) had sent off a urine test. This would've meant waiting days for the results and I was in agony' (Sue).
In some instances doctors were seen as being impractical and patronising:
'I only wish the doctor had given me specific tips rather than the 'try to keep clean' nonsense which left me feeling down' (Eva).
Many women describe frustration and dissatisfaction at what they regard as inadequate pattern of care.
This pattern of poor practice is exemplified by Linda's description of her encounter with a poorly informed, apparently unsympathetic GP, who is perceived as inattentive and patronising. The prescription of an inappropriate course of antibiotic treatment and a rather dismissive attitude to her condition leaves Linda frustrated at what she regards as inadequate treatment for a potentially serious illness:
'I finally managed to get another appointment at my doctors today. Last week I had to go into the walk in medical centre as I had a urine infection and couldn't get a doctors appointment. They gave me a 3 day course of cephalexin which made me feel much better'.
Today I asked my own doctor for some preventative antibiotics as I have just had an infection from not having them and he refused. He gave me a week's course of trimethoprim to clear up the infection he said. I said I had already been treated for that but he just ignored me. When I got home I found out I can't take them anyway as I am breastfeeding and those ones pass into the milk in high doses. He didn't even look at my urine test results that were sent away by the walk in medical centre and didn't even test my urine.
I asked to be referred to a urologist again and he said "Why do you want to see one? They will only put you on a preventative dose of antibiotics". I told him that I have had urinary problems since I was 8 years old and I am in agony with a urethral stricture and my bladder is permanantly full plus I have interstitial cystitis. He looked at me as if I was a hypercondriac. I had to practically beg him until he finally agreed to refer me. He said there is a massive waiting list though and I could be waiting over a year.
I feel like screaming in frustration as the doctor won't listen to me. I know my body better than anyone and know how to treat it but I just get treated like a timewaster and told to drink plenty of water. He even said that an infection will go on it's own accord if I drink enough. Well if he bothered to read my notes he would see that I had to have kidney scans a few years ago after a really bad infection that lasted 8 weeks as my old doctor was worried my kidneys may have been damaged'.
By contrast some women reported having a 'great' or 'brilliant' doctor who was conscientious, caring and supportive-even though not always to great effect: 'my GP is brilliant, have had every test done imaginable and taken loads of antibiotics which relieve but doesn't get rid of the pain' (Elena).
Reports of a positive interaction with GPs repeatedly emphasise a woman's relief (and often surprise) to find that their doctor listened and was responsive to their complaint, that they had read the notes and were informed about the particular presentation of the woman and RUTIs in general. They demonstrated understanding and kindness and were willing to refer to more specialist expertise.
'Now I am with a doctor with a very specific interest in women's urology, their team is so sympathetic and immediately recognised that an inability to have sex is a problem which shouldn't just be accepted as something you have to live with, they also really understood the emotional and psychological impact that it has on those of us who have this problem' (Libby).
BMC Fam Pract. 2014;15(162) © 2014 BioMed Central, Ltd.
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