Understanding chronic pelvic pain
A new disorder?
Several GPs suggested that CPP was a particularly difficult condition to define and classify, recognising the uncertainty of dealing with apparently unexplained symptoms. One GP raised the issue of whether this was a new problem, and questioned the use of the label 'chronic pelvic pain'.
'I've never really thought of any condition as being chronic pelvic pain. So it's like a new description, I know all about IBS, and CPP doesn't spring to mind as a diagnosis I'd put on a computer very often. I suppose, thinking about it, since you first emailed, and I've not seen anyone since then, which is what, two weeks, who's come in with pain in the lower abdomen, related. I would imagine chronic pelvic pain is supposedly related to menstruation and women of menstrual age. So I was thinking, I don't know what the diagnosis is, even if I'd seen someone with lower abdominal pain that was recurrent, I wouldn't have thought of using that title. So it's almost like a new disease entity.' (GP 3.)
However, GPs were more aware than practice nurses of the labels such as CPP to account for symptoms of pain which cannot be explained by organic pathology. Practice nurses, tended to focus primarily on diagnostic categories and labels. They were also uncomfortable talking about symptoms which could not be explained in bio-medical terms. Nearly all GPs could talk about at least one patient fitting with their definition of CPP. It was generally viewed as lower abdominal/pelvic pain that was variable and had been ongoing for months for which a cause had not been identified.
'But to me it's a pain that you've tried in every way to solve, by surgery, by pain killers, by treating what you feel is the underlying condition, but that pain has not gone away.' (GP 17.)
'Not as chronic pelvic pain, as you say. It was dealing with chlamydia, dealing with PID, dealing with you know - ovarian cysts, polycystic ovaries but not pelvic pain... 'Cos it's like the other way about isn't it. Rather than a symptom of PID is pelvic pain rather than pelvic pain and what could it be?' (PN 14.)
GPs readily acknowledged the possible overlap in symptoms between CPP and IBS. One GP noted that the similarity between the two conditions should be treated with caution:
'And sometimes pelvic pain can be misdiagnosed as, you know, probably possibly irritable bowel syndrome, but you have to be careful that you don't put it down to irritable bowel syndrome as it may be something more serious gynaecologically' (GP 6).
In contrast, practice nurses attributed their lack of awareness of CPP to their lack of training. One nurse explained that despite doing several courses related to women's health, she had not covered CPP specifically:
'No - huge gap, bearing in mind that I trained in 1980s...I've been on quite a few and if it was an issue, it certainly should be introduced perhaps in the Cytology Module, 'cos that's an ideal opportunity, you know what I mean, if your seeing women on a regular basis, or should be, as least three yearly, so if there's any chronic ongoing thing it would be picked up at that, you know what I mean but no, definitely not'.(PN 717.)
Diagnosis by exclusion
Not all GPs were comfortable applying the diagnostic label of CPP to a woman, preferring only to use this term when underlying physical pathology had been excluded, or were confident that the problem was largely due to psychological phenomenon.
'...to an extent I would see it as a diagnosis, possibly of exclusion, that perhaps might be arrived at after various sort of acute, or acute on chronic, conditions had been excluded, treated, eliminated if you like.... pain... without, an organic basis, or with no demonstrable underlying physical pathology and that's kind of my working definition of it.' (GP 21.)
'Well, at that stage I would be, I wouldn't be identifying it as chronic pelvic pain, I would never make as I say, I don't use the term, so I wouldn't be thinking, you know, I wouldn't be thinking that at all. I certainly wouldn't be thinking of it until I had ruled out any sort of explanation.' (GP 16.)
Practice nurses did not feel that they had any role to play in the diagnostic process other
than delegated tasks of taking swabs from women:
'I've not got the power of diagnosis...'(PN 706)
'If they said to me that they were tender or whatever I would take some swabs and suggest that they make an appointment to see the doctor when the swabs were back, because you're getting into the realms of diagnosis and I feel that's not really my role' (PN 704.)
The lack of cohesion between GPs' and practice nurses' understanding of CPP was reflected in the adoption of different management styles, and level of involvement with this patient group. These included:
a) Exclude the physical
The most frequent diagnostic strategy focussed on excluding underlying physical pathology. GPs played an active role in this stage. This process appeared to be well defined for the GPs, many of whom described similar diagnostic workups and symptom management strategies. However, this process concentrated on 'excluding the physical', rather than a seeking a diagnosis that could explain the symptoms.
'And then if you've done the investigations, ultrasound normal, bowels working fine, probably end up doing, if their periods are at all irregular I might do hormone tests, check for diabetes, try them on medications such as, uh, antispasmodics, anticholinergics, uhm...' (GP 3.)
In contrast the majority of practice nurses described a more restricted role whereby they performed the investigative tasks delegated to them by GPs.
'...they come to me specifically to have swabs done...' (PN 714.)
b) Include the psychological
This appeared to be the preferred option for GPs once pathology had been ruled out and the women re-presented.
'Well, depression. Stress, you know, any sort of kind of stress, stress related issues. Can always make things....I was going to say seem worse, I don't mean seem worse, 'cos they are worse, you know, they feel worse and yet if you were to, I suppose, in some way if it were possible, if you were to sort of say, well this is × amount of pain and that is × amount of pain, but you feel it as × times 2 because you're depressed. But you can't actually measure that. So one gets the impression that that's what happens.' (GP 12.)
Whilst practice nurses showed awareness of psychosocial issues, and acknowledged that women might find CPP a difficult condition to cope with, they did not appear to directly address these issues in practice.
'Probably not (coping) very well, I think if somebody's telling you there's nothing wrong with you, and yet you're in a lot of pain, it must be absolutely, well I know it is, it is absolutely soul destroying and then you start to self-doubt yourself. Is it me?' (PN 709.)
c) Function of referral
GPs described referral of some women with chronic pain mainly to gynaecology, gastroenterology, pain clinics and psychological services, but respondents described a lack of availability of the latter two services and questioned the usefulness of any referral. Gynaecologists were seen as being the least useful in the management of this patient group.
'I would always try and keep them out of gynaecology because I find that once I've referred them to gynaecology it's a gravy train, and then they, they go to gynaecology and they get pushed from this investigation to that investigation to the other investigation and basically they never get better (laughing) gynaecology never let go of them either...' (GP 14.)
The decision to refer was felt to be driven by patient expectations, as well as their own lack of appropriate skills to manage these women:
'I mean I don't know whether it (pressure) is necessarily coming from the patient, it might be a pressure from my own sort of inability to make people better but I, I do feel there is pressure from, from the patients. Because I do see, see that it is, I find it very difficult to try and bring patients round to looking at ways of coping with the pain, or maybe looking at psychological inputs, or a psychological reason for the pain, I find that extremely difficult.' (GP 14.)
'...sometimes we feel that we've done what we can, you know, what more can we do and I think that's where, you know, people with a psychological mindedness about the work that they do in primary care would still regard that as something to take on. Other people don't feel confident about it or really don't know what to do, and it may well be that, that, that the literature would also be helpful to them in that, you know, they may not be the right person to do it themselves, but they might well be able then to facilitate a person getting help elsewhere.' (GP 8.)
Practice nurses did not view their role as referrers outside the practice, with all practice nurses stating that they would always refer a patient back to the GP:
'Occasionally, if somebody were to, I would guess that if somebody just presented with pelvic pain, they would probably make an appointment with the GP but if they did come to see me first, I would still refer them to the GP but I would take a chlamydia swab and I would take an ordinary HVS and just sort of get a background and a history and then ask them to make an appointment with the GP when the results are back so that, in other words, that background and investigation, part of that's been done but I don't feel that I'm qualified to actually do anything more than that.' (PN 717.)
An intractable problem
Therapeutic nihilism
GPs and practice nurses acknowledged that CPP was a difficult problem to manage both for themselves, and for the women who presented to them with this condition. However, ultimately it was the GPs who managed this group of patients until either diagnosis was confirmed, the problem resolved or the women re-presented with what were considered as other medically unexplained symptoms.
'Yeh, I think, I mean, the problem is, as always, that time's an issue and, uhm, and these patients are often people who have got named seats in the waiting room, so you see them very frequently. And when you look back over the years almost everything's been tried for them, uhm, and I mean there does come a time with some patients where you say, well I'm sorry, this is something you'll just have to live with.' (GP 20.)
A sense of failure and frustration permeated the GP and practice nurse interviews:
'I don't know. It's just massively frustrating, and I mean we know ourselves, because if somebody comes to see me and they've got chronic pelvic pain and they've come to see me lots of times before and they're not getting any better I feel frustrated and I feel down hearted before we start as well. And the fact that people with chronic pelvic pain do make me feel frustrated, means that people probably aren't particularly satisfied, doesn't it, I meant these are the sorts of things that, these are the sorts when you feel people aren't satisfied.' (GP 14.)
'Oh, nightmare! Because I'd just feel that there was nothing I'd be able to offer her because I'm not aware of anything that's there for her. It would cross my mind, which is awful, whether it is a psychological thing, which is that's awful because there's nothing worse than having this thing and nobody's taking you seriously but again, if a Consultant has failed and the GP, what role, do you understand the position I'm in? What could I offer where they have failed and as yet, I don't really know?' (PN 717.)
Awareness that women disengage
GPs suspected that some women probably discontinue the route of seeking help and treatment from their GP.
' There's probably a group who attend and attend and re-attend and frequently attend, then there's a group who feel they're not getting anywhere and they feel they're mithering their doctor so they don't attend.' (GP 2.)
'... I'm sure there are lots of people, I can imagine women saying that they feel dismissed...' (GP 8.)
The reasons why were less clear, it may be that women begin to normalize the pain, or discontinue seeking medical help because they feel dissatisfied with their consultations. However, practice nurses acknowledged that women may be left feeling they have to manage the pain themselves.
'Perhaps women think that it's just due to something to do with their menstrual problem... so it's a gynaecological thing and it's something that they've just got to put up with. And perhaps some people think that it's normal to have some of this pain. It may be too that they perhaps get very little sympathy and support from partner, husband or whatever, uhm, and so that makes them just keep on putting up with it.' (GP 7.)
'...the professionals are probably frustrated that you can't actually offer anything constructive in way of a diagnosis, which is often a problem with anything that's chronic that you draw on expertise that you have available, and you've explored avenues...sometimes if you draw a blank, its quite frustrating and that reflects and the patient will go away feeling that however they manage it, they've got to manage it themselves, because there doesn't seem to be a readily available solution or management strategy for them really.' (PN 702.)
'If they're coming back, but they are probably not coming back, the majority of them, they think - oh I'm wasting everybody's time - they think I'm neurotic. I think there is probably an awful lot of women, as I say, putting up and shutting up'. (PN 713.)
GPs noted some women's use of alternative sources of help, through alternative therapies and media literature; especially if they are unhappy and the pain has a large impact on their life. It was acknowledged that these routes were only available to women who could afford them.
'And I suspect, but I don't have evidence, to show that this group of patients are more likely to do that because, over a long period of time they're quite likely to become disenchanted with conventional medicine, and I'd turn to alternatives.' (GP 20.)
'Certainly when patients do come they've always read the sort of ladies' magazines, and I think perhaps now information is around a lot more than it used to be. Whereas for it for some people it will encourage them to seek attention, for a lot of others, particularly for something like chronic pelvic pain, where there is no easy diagnosis or easy management, easy treatment, I think a lot of women are aware of that, and perhaps don't necessarily seek treatment or help - straight away.' (GP 6.)
The benefits of complimentary therapies were usually described by respondents in terms of extra time, relaxation, and psychological support women receive that may not be available from the NHS:
'I think it actually helps a lot of women because, partly because of the time that's spent and again it's, somebody's listening to them, as well as it's quite, it's quite a pleasant experience having the massage and the therapy, a very relaxing experience often and it's, it's a time for them.' (GP 17.)
'Uhm, and appeared to benefit from her regular sessions with the physio. Now from my point of view I'm not sure whether that was because she had an hour one to one with a person that was taking a particular interest, whereas when she comes in here we manage to see her for probably about 20 minutes because she talks the hind legs off a donkey and then, then she's gone, and certainly in secondary care you don't usually get a great deal of time with a person, so I think, uhm, there's been quite a lot of psychological support through her physio, as well as the actual physiotherapy manipulation things.' (GP 4.)
Clinical competence
The majority of GPs described clinical and inter-personal skills required to manage this patient group, including listening, believing, discussion, support and using reattribution.
'Yes, we have to say that there is a pain there, and we don't know why, we believe that she has got the pain, but there is nothing seriously wrong there so she shouldn't be afraid of any cancer or any incurable disease. Also to explain to her it might not actually cause problems to her fertility in future, and the treatment option is just pain killer and maybe to do things which don't cause aggravation to her symptoms, even a small dose of antidepressant might work here and a low dose of amitriptyline as well, which is an antidepressant, but a low dose can help pain, any chronic type of pain really.' (GP 1.)
However, most GPs suggested that their practice nurses did not possess the necessary skills or training to be able to fully engage with this patient group.
'No, because I think managing needs is very difficult, managing people with pain syndromes is very high order skills, you need the kind of skills of, uhm, reattribution and managing somatisation, all that kind of thing, which are actually very difficult skills to acquire, and most practice nurses aren't trained to do that. I think most doctors are not very good at it either.' (GP 15.)
'Only in so far as doing the investigations and swabs and things. I mean we often share, particularly with one of the practice nurses, I often share care of people of all sorts, it's possible that they would get involved, but they don't have any particular training or experience to deal with pelvic pain as such...' (GP 10.)
The majority of the practice nurses interviewed, however, suggested that they could have a more active role in delivering interventions to this group of women. This appeared to be linked with notions of easier access to practice nurses. Women may present to the practice nurse opportunistically, and the practice nurse may be perceived by women as more approachable than the GP.
'....there is definitely a role because practice nurses are usually the first point of contact, especially when they are carrying on well woman clinics, doing cervical smears, etc new patient health checks, whatever. You know they are usually the first point of call, people will come to us, they trust us, see us as a professional person, and they can come and confide in you and get answers.' (PN 5)