Judy Birch B.Ed
Co Founder and CEO of Pelvic Pain Support Network
Living with any chronic pain imposes a heavy economic and social burden. The Pelvic Pain Support Network (PPSN) is a patient and volunteer led charity. Established in 2006, the charity supports those with undiagnosed as well as diagnosed, long-term (chronic) pelvic pain, by highlighting this much neglected area and improving access to care for patients.
What is chronic pelvic pain?
Chronic pelvic pain is defined as either intermittent or constant pain in the pelvic region lasting longer than three months. It presents in primary care as frequently as migraine or low back pain.
The World Health Organization (WHO) has recognised the International Classification of Diseases 11 (ICD 11) work on chronic pain, which takes effect in 2022. This means that chronic pain is now noted as requiring special consideration and treatments; chronic pain can be tracked as a diagnosis or co-diagnosis in an underlying disease, and data such as cost information, treatments, and societal impact of pain can be made more readily available.
What are the challenges for pelvic pain patients?
Nationally, patients face difficulty in being referred for help in managing their pain, despite this being their priority. Services are designed to cater for those with straightforward pelvic pain issues that can be resolved quickly by a single specialisation.
Chronic pelvic pain encompasses gynecological, urological, gastrointestinal, neurological and musculoskeletal causes and it is not unusual for more than one of these to be involved1. This can present a clinical challenge with regards to assessing, treating and managing symptoms as, traditionally in the UK, there has not been a multidisciplinary approach to pelvic pain.
In complex cases it may be difficult for any single speciality to decide how to progress the care of the patient necessitating referral to a regional pain management centre2. NICE recognises the benefit of pain management programmes for chronic pelvic pain3.
What is PPSN doing to improve the situation?
Within the charity, we encourage a multidisciplinary approach and work to change the traditional culture. Our advocacy role involves campaigning on behalf of pelvic pain patients through representation at conferences, meetings, workshops, policy development and events for clinicians and the public. We invite and encourage patients to participate in all aspects of our work and regard developing their skills as crucial.
Chronic pelvic pain encompasses gynecological, urological, gastrointestinal, neurological and musculoskeletal causes and it is not unusual for more than one of these to be involved.
We help educate both the medical profession and the public, by raising awareness in all matters relating to pelvic pain and its treatments. Patients deliver sessions on the “patient experience” for undergraduate nurses and doctors. This forms part of the chronic pain curriculum for nurses and for fourth year trainee doctors in the obstetrics and gynaecology rotation in some UK universities.
The charity was awarded first place in the category “Professional Education” for the European Civic Prize on Chronic Pain in recognition of our work “Patients as Teachers in Health Professional Education”. Patients who deliver this have broader experience of treatment within and outside of the UK, elsewhere in Europe.
We have organised several workshops to encourage cooperation between clinicians and researchers from various disciplines and countries to foster a greater exchange of information and collaboration in the field of chronic pelvic pain.
We encourage research by appropriate institutions that aims to improve the quality of life of those with pelvic pain. PPSN continues to represent those with pelvic pain in many research trials and studies. Several of these have been published and some are ongoing. This involves patient input at all stages of the process from the pre funding application stage through to dissemination of the results. An example of such research is described in the accompanying article.
Information and support for those with pelvic pain and those close to them is available via our website, message board and Facebook page. Patients appreciate information that helps them to understand their pain and what they can do to help manage it. This allows them time to digest information and can facilitate shared decision making.
[1] EAU Chronic Pelvic Pain Guideline https://uroweb.org/guideline/chronic-pelvic-pain/ | [2] The Royal College of Anaesthetists: Faculty of Pain Medicine (2015). Core Standards for Pain Management Services in the United Kingdom. |[3] The National Institute for Clinical Excellence (2017). Endometriosis: diagnosis and management. NICE guideline NG73.
