The aim of this information is to give those suffering from and those interested in pelvic pain a brief overview of the literature about quality of life and pelvic pain.
There is increasing evidence indicating that pelvic pain has a significant impact on quality of life. There is also a long delay in diagnosis for those suffering from many of these conditions. The delay before surgical diagnosis of symptomatic deep infiltrating endometriosis was significantly longer for patients with advanced stage IV (revised American Society for Reproductive Medicine [ASRM] score >70) disease than for those with stage I, II, III, or IV (revised ASRM score <or=70) disease ( Matsuzaki S 2006). In the case of endometriosis the delay is around 7 years in the UK for patients who present with pain symptoms: generally severe period pain. It appears that in many cases primary care can be a barrier to appropriate referral with patients consulting over many years with severe period pain.
There are a few published studies on quality of life for some of the more common pelvic pain conditions such as endometriosis ( Gao X 2006) but many conditions such as pudendal neuralgia and pelvic congestion syndrome are not well known and there is little information about them. Some of these conditions have a greater impact on physical function than others. Some may have a greater emotional impact than others. In a recent article from Brazil, quality of life scores have been found to be similar between groups with and without endometriosis ( Souza CA, Health Qual Life Outcomes, 2011) In a multicentre study physical health related quality of life was significantly reduced in women with endometriosis compared with those with similar symptoms and no endometriosis ( Nnoaham KE, Fertil Steril, 2011) The areas that are reported as being affected by most women with pelvic pain are ; pain, physical functioning, family life, sexual relationships, work and social life ( Fourquet J, Fertil Steril 2010) Some of the areas affected may not be captured in the quality of life questionnaires used in published studies. In an attempt to draw on peoples own views, rather than questionnaires, a recent study looked at the effects of being disbelieved when you have a chronic pain condition ( the study included accounts from women with persistent pelvic pain). This suggests that a sense of being disbelieved, or that your condition is not a valid one, can affect personal relationships and leave people feeling stigmatized, isolated and distressed. ( Newton et al, 2013 )
There is greater attention to low back pain than there is to pelvic pain and yet the prevalence of these amongst people consulting a GP is similar. (Zondervan BJOG 1999) In fact, pelvic pain in the general community may be higher than that of low back pain (Zondervan BJOG 1999). Pelvic pain is suspected to affect more women than men although the prevalence among men is unknown. Could this be a reason for the lack of attention to pelvic pain? There is little information about the impact of pelvic pain and work. The Pelvic Pain Support Network presented the results of the 2010/11 online survey on pelvic pain and work at the IPPS/IASP PUGO/ConvergencesPP meeting in Istanbul in May 2011 and the results of those with endometriosis at the World Congress on Endometriosis in 2011. The results of this survey show that there are major issues for patients relating to work including employers attitudes. This pain is not visible which creates specific difficulties. In addition it affects a part of the body which is generally hidden. Could this be another reason for the lack of attention to pelvic pain? (McGowan L BJHP 2007).
In 2005/6 the Pelvic Pain Support Network carried out an anonymous online survey of chronic pelvic pain and quality of life amongst patients from the UK, the USA and France. The survey included men and women with some common and some less well known conditions although there are fewer pelvic conditions affecting men. The survey was compiled by patients with pelvic pain from three countries, in English and French, with input from pain specialists. The questions asked about access to services and sought patients’ views on care as well as the impact of pain on physical and emotional wellbeing. Some of the questions in the survey were based on the Endometriosis Health Profile 30 (EHP 30) which was developed for assessing quality of life in endometriosis patients.
The survey showed that female patients generally consult gynaecologists for pelvic pain but that patients in the USA were more likely to have consulted a neurologist and patients in France were more likely to have accessed care from an inter-disciplinary team. The survey indicated that an inter-disciplinary approach is helpful and that patients are increasingly willing to cross borders to access such expertise. The 2004 Pain in Europe survey also established that a high proportion of patients with chronic (long term) pain would go anywhere to gain help. ( Breivik H et al EJP 2006)