"Secret Suffering" Book Review 03/31/2012
I stayed up until midnight last night reading "Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships" by Susan Bilheimer and Dr. Robert J. Echenberg. I did not plan to stay up that late reading but I devoured this book, my heart and spirit devouring every word, pelvic area illustration, and countless interviews by women suffering from chronic pelvic pain (CPP) and how this pain affects their lives, jobs, emotions, relationships, like rain soaking into the dry soil of my soul. This book is well-written, empowering and compassionate and finally gives a voice to the millions of women suffering from severe pain in their most intimate body parts. Susan Bilheimer, the author, has suffered from CPP for many years and her personal story of suffering and how it affects her relationship with her husband is woven throughout the book. It is her complete understanding of how completely CPP encompasses every aspect of her life and her passion to tell the stories of other women suffering from CPP that this book was written and we should all thank her both for her courage and her tenacity for both writing the book and collaborating with so many incredible medical experts from psychologists to urologists to the book's co-author Dr. Robert J. Echenberg (who was featured in an interview on this website in January). This book has helped me to understand how my own CPP symptoms developed in early childhood and how all of those seemingly unrelated pains and ailments I experienced as a child (emotional trauma, chronic headaches, TMJ, IBS and scoliosis) contributed to unresolved and unhealed muscle memory stored within my nervous system well into my adulthood. When I began adulthood without resolving any of those physical or emotional traumas and pain, my poor diet, high stress (and an abusive relationship) ultimately 'forced' IC, dyspaureunia, vulvodynia to seem to 'erupt' overnight, when in fact they are interconnected pain components from having CPP. As Dr. Echenberg describes it so eloquently and is trying to teach the medical community that with CPP, pain IS the diagnosis! "Secret Suffering" should be,in my opinion, read by every CPP patient whether you suffer from IC/PBS or related diseases this book will give you great insight into the female pelvic anatomy, how the musculoskeletal anatomy affects CPP, and how non-invasive treatments and therapies should become the new treatment protocol. Another very important aspect that is covered with great compassion and detail is how CPP affects intimate relationships, whether in a long-term relationship, dating and it also provides information for both straight and gay women. It was very brave and important for Bilheimer to include interviews of the spouses/partners affected by CPP and to share their side of the story as well. Nothing in this book is sugar-coated or left out which is exactly how CPP is: embarrassing, loud, and unrelenting pain. I cannot recommend this book more highly as it is truly one of the better books written collaboratively by patient and medical doctor that I have read in a long time. There is so much compassion, caring and hope conveyed in this book, in spite of the difficulty of living with CPP and the difficulty in not only gaining a diagnosis but by the treatment of CPP patients throughout the US (and world) which is to say, dismissed, talked to in condescending tones, or made to feel that they are making up the pain in order to seek out drugs. The other promising and hopeful aspect presented in this book, as I mentioned, is the unrelenting drive of Dr. Echenberg and all of the medical doctors and experts presented in this book to provide their current and future CPP patients with the best medical care and experience within a medical setting than most have previously received. For the millions secretly suffering from any of the CPP diseases I urge you to buy and read this book immediately. Share it with close family and friends and with whoever you share your intimate life with. Your pain now has a voice and some incredible doctors, researchers and noninvasive treatment protocols that can bring you great relief from your pain and great hopefulness for your future. Add Comment Last December I was fortunate enough to be introduced to Wendy Cohan through the virtual world and she was kind enough to send me her latest book about IC. I have read almost every book written about IC and so I was delighted to hear of a new book on the topic. What struck me first and foremost about Wendy's book is that it covers new ground in the world of IC including new theories about gluten intolerance and its possible affect on IC patients. Most IC patients know (or think) there is a link to diet and our IC symptoms, but few books explain how or why this occurs, but Wendy's book does outline this and the last part of her book also provides some resources for trying a gluten free diet (as well as low-histamine, low-oxalate, Body Ecology Diet, and the allergy elimination diets). Wendy's book covers a lot of important material in a concise format with the overall theme of the patient seeking out their answers and therefore their own treatment protocol. I like the fact that Wendy herself is an IC patient so she writes from that perspective but the tone of the book is one of a medical seeker as she is also an RN, and she provides medical examples with lots of research backing up her statements. It is easy as an IC patient to become angry at IC and frustrated at what sometimes seems like an uncaring and slow to make advancements medical community, but neither Wendy nor her book take on this tone in the least. Wendy provides the full spectrum of treatment protocols starting with traditional Western and ending with more holistic based, with the overall emphasis of: the patient should choose what is right for them and to continue until "all stones are uncovered" until you find the answers for your individual health concerns. If you are seeking a medically sound, yet holistically friendly based book about IC, then I would highly recommend picking up a copy of "The Better Bladder Book" published by Hunter House books. |
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