Persistent pelvic pain – frequently asked questions
27 August 2024
The Faculty of Pain Medicine released a new position statement on persistent pelvic pain and endometriosis and has developed a series of answers to some commonly asked questions.
PS15(PM) Statement on pelvic pain and endometriosis is being piloted for six months until January 2025. We encourage feedback via [email protected] which will be considered at the end of the six-month review period
Following are some answers to questions we have already received in relation to PS15 and its background paper.
Why was this document developed?
Experienced clinicians who treat pelvic pain drew our attention to the fact that our health system and current models of care were not adequately meeting the needs of all women and people assigned female at birth (AFAB) with pelvic pain.
There are concerns that a sole focus on enhancing access to surgical diagnosis and treatment was at the expense of other approaches which can offer earlier, more accessible and widely available benefit to those with the condition.
Quality research on management of persistent pelvic pain (PPP) emphasises the importance of early intervention and attention to symptoms.
There is growing evidence that pelvic pain often has very little visible pathology, and treatments focusing on visible lesions don’t necessarily help to ease pain and some may in fact make persistent pelvic pain worse.
We are not advocating that funding for laparoscopic procedures should stop, as there is a role for it as one treatment option in the best-practice management of persistent pelvic pain.
Our aim is that funding for both healthcare models and research for this long-neglected condition be directed not to solely lesion or organ-based diagnosis and treatment but also include early multidisciplinary care to prevent chronicity.
How was this document developed?
This statement was developed by an expert group of specialist pain medicine physicians who also hold specialist qualifications in obstetrics and gynaecology or anaesthesia. They have extensive, daily experience working with people experiencing persistent pelvic pain, including in those who have been diagnosed with endometriosis.
The expert group undertook a thorough review of current and evolving scientific evidence in this area with many in the group having contributed to the body of evidence on persistent pelvic pain. Policy documents are regularly reviewed and updated with new medical evidence, as it becomes available.
The final statement was approved by the FPM Board, which oversees the faculty’s core role in promoting the highest standards of pain-related care based on available evidence and expert consensus. Professional documents reflect the view of the board at the time of their promulgation and as such are the collective responsibility of the board.
Do you claim endometriosis is a condition that does not cause pain?
No. The statement indicates that “The long-held paradigm that endometriosis lesions are a direct cause of PPP is no longer tenable.” It is well recognised that the stage of lesions found does not predict the pain suffered. If the lesions were a direct cause of pain, then it would be expected that there would be a more direct correlation between type and location of lesions and pain.
Endometriosis lesions may be a contributor to persistent pelvic pain and there are ongoing research efforts to try and understand the mechanisms behind this.
However, current and increasing evidence shows that lesions do not always cause symptoms. For example, research shows that lesions are found at laparoscopy in 40-60 percent of those with persistent pelvic pain, but also in up to 45 per cent of pain-free people. Research also shows that the presence of endometriosis does not exclude other causes of/contributors to pelvic pain and currently we are concerned that these are not always being considered and appropriately addressed.
We aim to highlight this evolving evidence to encourage the early, individualised treatment of pelvic pain symptoms with less of a focus on waiting for (surgical) diagnosis and lesion directed treatment.
Should surgical management of endometriosis/pelvic pain be withheld?
No. Surgical management has a place in certain cases. There is currently insufficient evidence on who is likely to benefit from surgery for pelvic pain and who will suffer deterioration in symptoms from surgical interventions.
However, evidence demonstrates that early intervention in persistent pelvic pain with a multidisciplinary approach can reduce the need for surgery and therefore reduce the harms and risks associated with surgery and may result in improved outcomes.
We support multidisciplinary care for people with persistent pelvic pain early in their pain experience. We also support research to clarify which people would benefit from surgical management and who will not. It is imperative that women are provided with both accurate information about the current evidence and with access to all treatment options so that truly informed decision making can occur. Decisions should not be made based on inaccurate information, or because other options are unavailable or unfunded.
It is important to recognise those living with persistent pelvic pain who are not diagnosed with endometriosis, but who have been further invalidated due to an absence of an organ or lesion-based diagnosis.
This highlights the complexity of persistent pelvic pain and the need for a broader approach to management. We advocate for the focus of individualised management to be on the person living with pain and not solely on lesions/pathology.
What is the “sociopsychobiomedical” approach to pain management?
The faculty is a world-leading body for knowledge about the causes and management of all types of pain.
We have found that the scientific evidence supports taking a comprehensive view of the whole person and their development, life context and cognitive framework because these all have an influence on pain.
We apply this approach to all types of pain, with much better long-term results than a purely biomedical approach.
How can we improve the experiences of people with persistent pelvic pain?
As specialist pain medicine physicians, we recognise that many of those living with persistent pelvic pain have not found the help they need in their interactions with health professionals, and too often management is delayed by lack of access to expert care.
Persistent pelvic pain is a complex condition. The needs of too many people with persistent pelvic pain are not being met by research and treatment that has its focus on an organ and/or lesions rather than the person suffering pain.
We hope to begin a conversation about how best to go about the task of improving pelvic pain care. Taking the evolving evidence about the relationship between endometriosis and PPP seriously does not mean that the lived experience of people who have experienced relief with surgical treatment is invalid.
Persistent pelvic pain is one of the most complex pain conditions and management options provided to those living with the condition should reflect this. A gold standard would be early, informed and individualised care pathways guided by symptoms, values, background and goals of treatment.
We are advocating for awareness and understanding of the evolving evidence base for an early multidisciplinary whole person approach to persistent pelvic pain.
We are calling for changes to our healthcare models and systems to deliver this care in addition to research funding to further understand this approach. Our intent is to reduce suffering and improve quality of life in a group of people who have often faced marginalisation and invalidation.
PS15 (PM) Statement on the clinical approach to persistent pelvic pain including endometriosis-associated pain 2024 (PILOT) and its background paper PS15(PM) BP can be found on the website.