Chronic pain isn’t a popular topic in health, or even socially. Chronic pain “down there” (yes, I’m talking genitals and in both women AND men) must be the least popular topic in pain management.
I think it might be a throwback to the Victorian past, or maybe that pelvic pain isn’t usually a compensable pain so it doesn’t get blamed for work loss, but whatever, it’s just not featured all that often in pain management.
Courtesy of my wonderful friend Sandy Hilton from Entropy Physio Therapy I’ve been prodded into looking at this problem, and came across a preprint of the British Pain Society’s pelvic pain patient pathway in the British Journal of Anaesthesia.
Pathways, like any algorithm or guideline, are intended to simplify and encourage consistent approaches to a clinical problem. They are often developed by groups of specialists in the field, and in the case of chronic pain, these specialists often come from a range of disciplines. What guidelines or pathways cannot do is provide a “one-size-fits-all” solution – and they don’t pretend to. What they do offer is a consensus position in what should generally work well for people with that clinical problem. Clinicians: you still need to use your clinical reasoning, and most importantly, you still need to listen to the person who has the pain to see if any recommendations work for them.
What do these guidelines come up with?
The first and most important point made in this paper is this: “It is because of a lack of understanding of basic facts that treatment is often inappropriate.”
Oh so incredibly true – pelvic pain is often treated as if it’s a biomedical problem only, managed as if it is an acute pain problem, and people with pelvic pain are often passed from specialist to specialist – meantime the person who is experiencing that unmentionable pain down there is dealing with the ramifications of pain affecting the very intimate parts of their body. Pelvic pain affects bodily functions like urination, defaecation, sexual intimacy – things that we generally think about as private, and don’t want to talk about.
To deal with the lack of basic facts about pain and treatment, the BPS includes a great deal of supporting information within the Map of Medicine care pathway. I’m sorry that this information isn’t available to the general public, instead it’s hidden behind the proprietary Map of Medicine paywall.
Back to the guidelines:
Classifying pelvic pain appropriately (ie diagnosing it), is the first step – chronic pelvic pain is not a homogenous problem. Some pelvic pain is an indication for rapid referral to specialist or emergency services, but what is highlighted in this document is that so many people have their pelvic pain mistakenly treated as an acute problem and (like people with chronic back pain) get an awful lot of inappropriate and invasive investigations. Now this probably doesn’t bother a more mature person – but in an eleven year old girl is tragic.
The second step is to recognise that people with pelvic pain experience psychological distress and negative behavioural and sexual problems. People with chronic pelvic pain may have trouble with anxiety, depression, poor sleep, difficulty working, and probably most distressing of all, relationship problems. People can become very fearful – hardly conducive to good sex! The guidelines make the point that clinicians need to ask about these problems and not wait for the person to raise them.
Thirdly, clinicians need to take time to give the person information about pelvic pain at a pace they can cope with, at an informational level they can handle, and be very careful about the language they use. I don’t think it’s great to suggest “you’ll never be the same again” or “you need to be careful” or even “you’ll have this forever”. I say this last one cautiously, because I think people do need to know pain is likely to remain – BUT IT DOESN’T NEED TO BE A LIFE SENTENCE!
Fourthly, physiotherapy, while not having a great deal of evidence specific to pelvic pain, is strongly recommended in this guideline. The main approach is reassurance, and maintaining general activity level. Early and comprehensive assessment by a specialist pelvic physiotherapist (yes, an internal assessment IS necessary) is especially needed. Good physiotherapists can provide manual therapy, but will always work with the person who has the pain to learn how to do stretches and strengthening exercises, as well as desensitising activities that go a long way towards reducing the threat value of pain.
Opioids are not given wholehearted endorsement. This is great to see – there is mixed evidence for opioid use in chronic pain because it hasn’t been shown to lead to increased function, and even less evidence is available for pelvic pain. Not only that, but opioids constipate (not terrific if you have pelvic pain), can impact on the endocrine system including lowered sex hormones, and can be associated with opioid-induced hyperalgesia or an increased sensitivity to pain.
Referring for specialist help – this set of guidelines suggests primary management for a maximum of six months, and if there is not improvement referral should be made to secondary care no later than this. Of course, that’s hoping there is secondary care for chronic pain available!
When someone gets referred to secondary care, then what? Interventional therapy can be offered but the guidelines say this (and my experience supports it):
“nerve blocks rarely provide long-term benefit on their own, and consideration should be given to multidisciplinary team involvement to maximize outcomes. The pathway goes on to discuss the frequency of repeat injections, indicating that the duration of benefit and potential complications (e.g. repeat steroid use and the cumulative dangers of X-rays) need to be considered. Currently, for some injections the procedure can be performed only with Computer Tomography (CT) guidance, even with modern scanners a significant radiation dose to the pelvis is required. In a secondary care setting, interventions need to be supported by physiotherapy, graded activity, explanation, education, and self-management (Baranowski, Lee, Price & Hughes, 2014, p. 4).”
I’m not sure why these other modalities aren’t required in primary care, because they probably empower the person far more than being injected. I think it relates to the poor funding to support allied health working in primary care – at least, that would certainly be the case in New Zealand.
I’m sad that although there are some great recommendations in this guideline, I’d like to see it go further. Maybe it’s the rebel in me, maybe it’s because it’s difficult to get seen in a secondary care setting, and maybe it reflects the limited evidence base for treating pelvic pain, but I’d like to see the conservative physiotherapy, graded activity, explanation, education and self-management promoted up-front and from the beginning.
Why wait? Waiting leads to more distress, more relationship disruption and more cost.
I haven’t seen anything like this guideline available in New Zealand – would that it were, because I find it distressing that young girls go through multiple invasive procedures that inevitably lead to tissue damage and post-surgical pain, and increase the risk of chronic pain (surgery is a risk factor for chronic pain). I know the clinicians intend to do the right thing, but I wonder if allied health clinicians were more widely funded to work within private healthcare in New Zealand, the need to do surgery might be reduced. Of course we might need to do some research – and some lobbying. What do you think?
A. P. Baranowski1, J. Lee, C. Price and J. Hughes (2014). Pelvic pain: a pathway for care developed for both men and women by the British Pain Society British Journal of Anaesthesia DOI: 10.1093/bja/aet421
Kalso, E. (2013). IV. Persistent post-surgery pain: research agenda for mechanisms, prevention, and treatment. British Journal of Anaesthesia, 111(1), 9-12. doi: 10.1093/bja/aet211