In this quarter’s book review, we highlight two resources aimed at those affected by pelvic pain (with or without a diagnosis of endometriosis). These books are primarily written for teenagers, their families, and carers, but also serve as practical tools for clinicians supporting this group.

The first and most recent book, When Periods Hurt – A Guide to Periods, Pain and Endometriosis for Teens, is by Dr Susan Evans, whose work and advocacy in this space is well known and respected.

This self-published book edited by pelvic pain-friendly linguist and long-time collaborator Professor Roly Sussex, builds on Dr Evans earlier work ‘Endometriosis and Pelvic Pain,’ offering a simplified and updated guide.

Aimed at teenagers, particularly girls and those assigned female at birth (AFAB), the book avoids medical jargon, offering simple explanations to navigate various topics related to pelvic pain. It is also a great resource for those who know someone with pelvic pain and want to understand more.

It begins with the foreword: “be your own ‘pain boss’,” setting the tone for empowering people to take charge of their symptoms. This message and encouragement to have one’s own agency is repeated throughout the book in various forms (e.g. “You are the boss of your own story”) (p6).

The book is divided into short chapters, each addressing an area or component of pain with included explanations of our current understanding of the aetiology and contributing factors and ending with treatment options. Content is further broken-down using colour codes for ‘medical words’, ‘fun facts’ and ‘top tips’ to help sub-divide and brings attention to different messages, and it is further divided into coloured icons which refer to treatment options and resources.

There is a dedicated chapter on surgical options (focusing on laparoscopy), as well as one for gender-diverse and trans people. I particularly appreciated the section specifically tailored to school – useful for pupils and teachers, caregivers and family.

Dr Evans includes just enough medical information to make the book relevant and helpful. I especially liked the inclusion of other common conditions of the ovaries in young people such as haemorrhagic and functional cysts, polycystic ovary syndrome (PCOS) and ovarian torsion, as well as irritable bowel syndrome (IBS).

The book makes the important distinction between the diagnosis of endometriosis and the symptoms of endometriosis, though I would have liked this distinction to be made a little more obvious and encourage proper nomenclature. I appreciated the frequent reassurance that the pain although real is: 1. not life threatening or dangerous, and 2. can be treated or made better.

Importantly, the book addresses common fears such as:

• What if I have a negative laparoscopy?
• Am I stuck with this pain forever?
• Am I doomed to have endometriosis because my mother had troublesome menses?

Chapter seven is directed at parents and caregivers and aims to dispel and address some myths around care for a child in pain, particularly when there is a history of the same in the mother. Dr Evans skilfully navigates and gently discourages enabling maladaptive sickness behaviour while providing practical alternatives. Reading this chapter I found myself thinking of several parents in my own practice who would benefit from reading this.

As it is written by the founder of The Pelvic Pain Foundation of Australia (PPFA), it frequently references to the PPFA’s online resources and Dr Evans’ previous book, aimed at adults. Personally, I would have liked to see more diversity in the resources, especially for teenagers who are so well e-read. Similarly, TENS machines, heat packs, etc., are widely available and may be more affordable elsewhere than those listed through the PPFA. These are potentially impressionable teenagers, so putting financial barriers in front of them by making them believe that there is only one source of these aids, could be problematic.

At the end of the book, Dr Evans includes self-management plans (blank copies of which can also be downloaded from the Pelvic Pain Foundation website), including daily and flare-up pain plans. Sample plans are included to make it easy to understand and guide readers. There is also a “What I’ve tried so far” section that encourages readers to document treatments, benefits and side effects which is helpful for future doctor appointments. As a clinician who treats endometriosis, this practical component is very welcome.

If anything, I feel the language sometimes oversimplifies issues, but perhaps this is a function of pitching it for the younger audience, with menarche now occurring an average age of 11.9 years in high income countries.¹ The book covers a broad range of topics across 140 pages, though I would have liked the contribution of biopsychosocial factors, particularly comorbid psychiatric disorders (e.g., anxiety), the impact of trauma, and whether self-care/menstrual care is discussed at home.

In this vein, I would have liked to see more on the following:

1. Other trusted resources, particularly online
2. The possibility that pain may not always be gynaecological in origin
3. Co-morbidities such as Attention Deficit Hyperactivity Disorder (ADHD), Postural Orthostatic Tachycardia Syndrome (POTS), Autism Spectrum Disorder (ASD) medications and whether they are safe to mix with medical treatment options for pelvic pain (or not, or counterintuitive)
4. Greater context in the ‘should I go gluten free’ section (p37), linking processed food more broadly rather than solely on wheat or gluten containing foods for non-coeliacs.

Overall, this book is an excellent resource for young women and AFAB who have pelvic pain. It succeeds in being empowering without reinforcing the common belief that all pain must be active endometriosis and hence resulting in the over-servicing which that receives.

Message from the author:

Individual copies of the print book ($33.95) or e-book ($27.50) are available from the Pelvic Pain Foundation of Australia online shop at www.pelvicpain.org.au.

Medical practices can purchase a box of books (50 copies) at discount directly from [email protected]. You are also welcome to email this address if you have helpful comments or suggestions for future print runs.