When I was first diagnosed with everything I remember sitting there being truly thankful for Jill Osborne’s IC-Network and the ICA because it made me feel not so alone. When I started buying all the books I used to buy so I could learn everything I could about these conditions I remember sitting there thinking that a book needed to be released that encompassed everything about what kinds of shitstorms these conditions drag along with them on their coat tails. Not just about why the conditions reek the havoc they do on our bodies but also what they do to our personal lives and our cool factor. I mean seriously…CPP conditions have a way of being the armpit sweat stains on a gray tee shirt in summer or a piece of gravel stuck in the sole of your favorite shoes. Where was the literature that told the inner workings of that story? I waited for awhile but nothing like that was really out at the time. I never was one for patience.
It took a few years but I was able to witness the cultivation of the Secret Suffering project as it unfolded. It was exactly the book that I had been hoping for all that time.
Meet the Authors:
Dr. Robert Echenberg and Susan Bilheimer both took the things that they are extremely good at and used those characteristics to create a book that could relate to many different kinds of Chronic Pelvic Pain patients. Dr. E’s medical expertise is not easily surpassed and it shows in the way that he explains the logistics of these conditions in the book. Susan is a genuine people person and is able to see just how these conditions affect one’s personal affairs and state of mind in a non-medical sense. I have the pleasure of knowing both of the authors personally and can honestly say that they put their hearts and souls into this book. It encompasses everything that suffering in silence because of a chronic pelvic pain condition is all about and gives an amazingly accurate inside look at how these conditions affect a person’s intimate and personal relationships. With that being said….here’s what I think.
Many of the stories and quotes in the book come from personal interviews with patients and doctors and an online survey that was sent out to chronic pelvic patients. The stories are very personal and cover many of the topics that mainstream medical condition coverage won’t even touch. What I really, really, realllly, respect about these personal stories is that they covered all different types of scenarios. There is a chapter based on the issues with chronic sexual and pelvic pain in a lesbian relationship. I feel that it proves a great point that there doesn’t have to be a penis inserted for there to be excruciating vaginal pain. There are way too many people that think that painful sex is only caused by insertion. This book even goes so far as to talk about how excruciating orgasms can be for some people. That is something that I feel is really important when trying to explain to those non-believers that this shit exists. SHUN THE NON BELIEVER.
There is another chapter that touches on the husband’s point of view. We often hear about the women who have been married for years with families and careers that have to get put on hold because the pain is so severe. We hear about how much it pains them to feel like they are failing as a wife or as a companion or even as a mother because of the debilitating pain they endure on a daily basis but we don’t often hear a first hand account of how much it hurts the husband…to have to watch the woman he loves suffer so much. I feel that the authors really hit it on the head with this one….this is something that NEEDED to be discussed.
Something else that makes this book uber useful is the fact that they explain how certain organs,tissue, ligaments, and muscles can cause sexual pain. I think it’s a massive misconception that pelvic pain means pain in the pelvic area only. Dr. E explains this very well in Chapter 2 (specifically page 6) that pelvic pain is in fact not just pain in the pelvic region but is an umbrella term used to describe the plethora of conditions most CPP patients are usually stuck with. The book includes pictures and diagrams that show what muscles are involved in putting more pressure on the bladder and where nerves are placed that sometimes make it hard for us to sit for long periods of time. It’s an important concept. You should all learn this stuff if you haven’t already.
The bad stuff:
There isn’t a ton that I don’t like about this book. There’s actually not even a 1/4 of a 1/3 and an 1/8 that I don’t like about it, but as someone who does a lot of marketing and advertising sporadically all over the place there are some things that hurt it. The fact that it came out in hardcover only was a massive problem. I am smart enough to know that the authors probably didn’t have much to do with the fact that the publisher was charging something like $45-50 for a copy but it still didn’t make it easy to get your hands on. Afterall, most Interstitial Cystitis, Vulvodynia, Lichen Sclerosus, Vulvar Vestibulitis, Endometriosis, and CPP patients are trying to afford treatments, meds, and a shit ton of other stuff that is vital to their survival and just don’t have the extra to buy a book for that much money. The good thing is that although it took a year or so there is now a soft cover available with much better cover art and at a much more affordable price somewhere around $20 now I believe. Yay. That’s good for us.
The only other thing that disappointed me was the fact that a lot of people didn’t even know the book existed! There just wasn’t a lot of advertising for it before it first dropped off the press. I’m hoping that the snowball has continued to roll since it came out because it is definitely a must read for both CPP patients and their loved ones.
If anyone is interested in checking out Dr. Echenberg’s clinic or in buying the book check out this website
Also, If you’re on Getglue go check in! No stickers or anything but it’ll help get the word out!
If you’ve already read the book please comment below with your thoughts and feelings as well. I’d love to hear what everyone else thinks.