PDF《Support for炉he烫hronic Pelvic Pain》

s office by the bravest of patients. Nevertheless, support groups got off the ground simply because a few very courageous patients were willing to stand on platforms and tell the world that they had a bladder or vulvovaginal pain disorder in order to raise awareness so as to help ensure that other patients would receive the right diagnosis and treatment at the earliest possible stage. This social taboo still exists today, although in some cultures it is more intense than others. It also creates a problem for support groups with regard to sponsoring since the taboo aspect limits the field of potential sponsors. National enterprises that may be very willing to support, for example, cancer, heart, diabetes and kidney patient asso- ciations, are extremely reluctant to have the name of their company linked to embar- rassing urological or gynaecological disorders. It is interesting that while prostate cancer has in recent years become an '

acceptable'

topic of conversation, interstitial

17 cystitis (IC)/bladder pain syndrome (BPS) or vulval pain disorders still have not, and patients continue to feel stigmatized and isolated. However, the support groups give them an opportunity to discuss their disorder openly with other patients, and this may in turn also help the patient to be more frank with their doctors about issues they find too embarrassing to discuss. Support Group Focus: Single Disorders or Combinations? Although patient support groups traditionally focus on one specific disorder, we have seen the emergence here and there of umbrella organizations covering several chronic pelvic pain syndromes in one association. In practice, however, it is quite difficult to combine groups of disorders where the patients may have completely different symptom priorities while at the same time paying adequate attention to each priority and very importantly ensuring that the support group has sufficient expertise on each disorder. Whereas the trend in recent years has been to look at what the different chronic pelvic pain syndromes have in common, these may not necessarily be the aspects about which patients are specifically concerned. On the other hand, it may be difficult to obtain research or other grants for specific uro- logical and gynaecological chronic pain syndromes, but potentially easier if pre- sented in a wider context of chronic pelvic pain syndromes. Alliances between support groups in this field may therefore be useful. Awareness,Information,Education It goes without saying that the less well-known a condition, the more time has to be devoted to raising awareness and providing information since the patient organiza- tion may be a main source of practical information about that condition. While a primary objective is to ensure that more patients with symptoms consult a doctor, this is not going to be effective if healthcare professionals have never heard of the condition. This particularly applied to interstitial cystitis/bladder pain syndrome in the early days of the first IC patient support groups. Not only was it virtually unknown among the general public but also little known among healthcare profes- sionals. This even applied to urologists who saw few if any IC/BPS patients since primary care providers were simply not referring patients to them. Consequently, the support groups'

campaign to raise awareness at a professional level was initially aimed at both primary care and specialists, but has gradually been expanded to include the allied professions, with urology nurses and pelvic floor physiotherapists later taking a keen interest in chronic pelvic pain syndromes. With an increase in knowledge of comorbidities, attention also had to be paid to raising awareness among gastroenterologists, rheumatologists, neurologists and of course pain con- sultants and encouraging them to cooperate in multidisciplinary care. This was and still is a challenging task.