Review of Secret Suffering

Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships

My physical therapist recently recommended a book to me called Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships by Susan Bilheimer and Robert J. Echenberg M.D. Because we're all very busy, I decided to write up a little review of the book so that it might make it easier for you to decide whether or not it's something you'd like to take the time to read. Also, if anyone else has found a book that is relevant to this topic that was particularly helpful (or awful for that matter!), please do share!

Book Summary

When I first saw the title I assumed "relationships" was referring to a woman's relationship with her partner. While that is indeed a large section of the book (it's a big topic with big implications) the book actually dealt with all sorts of relationships that women with pelvic pain have...with themselves, with each other, with partners, with doctors, with friends, and with family.

The author sents out to do two things in this book:

a) to show women that they are not alone in their struggles with pelvic pain and the effect it has on their relationships and

b) to give advice (from real women who have gone through this) on how to deal with these struggles.

In addition to fulfilling those two goals, the book also attempts to educate doctors in how to deal with pelvic pain patients. This stems from the fact that one of the authors (Bilheimer) is a pelvic pain sufferer herself and the other author (Echenberg) is a pelvic pain specialist. Together, they are able to show two very important points of view--from the side of being a hurt and frustrated patient and from the side of a knowledgeable professional--both of which are incredibly helpful for other physicians to see. You may be wondering why this is important to you; this will be discussed below.

Pros and Cons:

Pro #1) I think this book is great for helping you feel not so alone on the issue of pelvic pain. Bilheimer includes many good statistics about how many women have pelvic pain (a shockingly high number!) which really made me realize just how many people are going through the same things I am. I do thoroughly appreciate hearing that because in my small sphere of the world, everyone seems to be happy, healthy, sex-having people and it's easy to feel like a freak among them.

In addition to the anxiety-reducing effect that the information has on me, I also felt empowered by just how many people are in this movement to gain recognition, education, and research funds to learn more about pelvic pain. And feeling empowered is a great remedy for the feeling of defeat that pelvic pain can induce.

Pro #2) This book helped me get a perspective on how I fit into the whole body of women with pelvic pain. It helps me see that I'm not the worst case scenerio. And while it can be frustrating to know that some women are in a whole lot less pain than I am, it gives me some very solid goals to shoot for in my recovery which keeps me level-headed amidst the ups and downs.

Pro #3) Because the book is based on many interviews that Susan did (through surveys and Dr. Echenberg's patients, I believe), one really interesting topic that is covered is pelvic pain through the eyes of a partner. This is something I wonder about a lot; I have been very lucky to have a partner who is incredibly sweet and caring but I am often curious to know how much he "sugar-coats" it for me when we discuss issues. In these uncensored interviews, I really got a glimpse of several different perspectives and I was able to understand more fully what my partner goes through and what concerns he has.

Overall though, the interviews with the partners just reminded me that most partners don't care as much about the sex as they do about the health and well-being of their partner. This is not to say that all the stories in the book had happy endings but the positive ones reminded me what a good relationship is all about.

Pro #4) This book was written with the express purpose to educate doctors about pelvic pain and because of this, it allowed me to get insight into how good doctors think. This was incredibly helpful because it cleared up what kind of doctor I was looking for and gave me a benchmark for what I wanted out of a physician. I now feel better equipped to be an advocate for my own recovery by knowing what to ask in an appointment, what kind of treatments to expect, what tests to expect, and, most importantly, when to get the hell out of an office if our views aren't lining up. I also feel that by knowing what the doctor may be thinking, I will be able to better prepare questions, bits of my story, and treatment ideas so that our appointments can be intelligent and purposeful ones.

Pro #5) There are some incredibly uplifting stories in this book but one really shook me to the core of my being. Towards the end, there is a story about a younger woman (a mom and wife) who had underlying pelvic pain through a double mastectomy (she had an aggressive form of breast cancer), a thyroidectomy (thyroid removed), and an oophorectomy (both ovaries removed). On top of that, she was violently raped and beaten as a teenager and was cheated on as a young adult. This story has the makings of a real tragedy but throughout the interview, this woman was upbeat! positive! She had moved through all of this with such power and grace and came out scarred yet unshaken to the other side. She has since been working hard to improve her pelvic pain and now lives a relatively pain free life; she manages to be an active mother and maintains a fulfilling sex life with her husband.

It is such an incredible story that I don't even feel like I can do it justice here. If you read nothing else of the book, I suggest you find that story at the end...it really had an impact on me.

Now that I've covered those, on to what's not so good about the book:

Con #1) This book doesn't cover a great deal of background on pelvic pain. They do get into the more nitty-gritty details on the factors that can lead to pelvic pain--like how the muscles, nerves, bones all play a role--but I wouldn't say they start at "square one". For that reason, I would suggest that those of you who have been newly diagnosed do a little bit of background reading on pelvic pain before reading this book. (I personally suggest reading Heal Pelvic Pain by Amy Stein for that.)

With this book, I expected to hear many more treatments options; there is, of course, nothing wrong with the fact that the authors chose to focus on the effect of VVS on women as opposed to different treatments, but the fact that there are very few treatment options that are discussed is something to be aware of as you consider reading this book.

Con #2) This one was the biggest one for me: there were times that the book struck me as a bit overly pessimistic for my taste. While the author often mentioned positive thinking, her descriptions and experiences suggested otherwise. I do think that she may have taken this tone to create a type of humor to outline her pain in a "spicy" sort of way, but I thought it became a bit too much at times.

So with this, I feel like there's a bit of a quandary. On one hand, I would guard against too thorough reading of this book if you're in a really dark place at the moment because I can definitely see why the attitude could make things more difficult to deal with. On the other hand, a big element to this book is that it really outlines just how much we are not alone in dealing with pelvic pain...and this can help with feeling overwhelmed with VVS.

I will put it this way: if it helps you to have someone acknowledge and validate your suffering, you might be just fine with reading this book at a difficult time. If, however, you are like me and do better with dealing with the dark times by distracting yourself from the pain, I would hold off on reading the book until you are feeling better. This is just a personal opinion...but one that I hope will help you decide if this book is appropriate for you to read right now.

Con #3) I was a bit annoyed at her perspective on how men view sex; she seemed to belittle the men who still craved sex even though their partner had pain. While I can most certainly see it from a woman-in-pain perspective, I was bothered by the judgmental attitude toward partners who still wanted to have sex. This, however, is a minor point of annoyance and one in which a) you may not share my views at all b) it honestly didn't take away from the book too terribly much.

So, my overall grade for this book is...

Grade: B

It has many strong points and touches on some very important discussions; the problems I had with the author's attitude is really what prevented me from giving it a full on A. If anyone else has read it, please let me know what you think.

Comments (9)

Pinkdawn29 · about 6 years ago

I bought this book, read it through once, then gave it away. It was sort of interesting to hear other women's experiences, but I can't say it helped me or made me feel hopeful at all. Maybe that wasn't the point. Also, I was amazed at the stories about women who repeatedly had sex even though it was painful. It made me wonder about my own tolerance for pain, because I absolutely cannot tolerate the sharp pain of penetration- no matter how badly I want to please my man, or maintain our relationship. I felt sorry for these women, but also amazed at their willingness to sacrifice and endure so much pain.

Crystalraf · about 6 years ago

My counselor told me to read this book too. After reading this book and researching treatments for vulvodynia, and vestibulodynia I came to the conclusion that I probably needed to have surgery. This book showed a lot of women having pelvic pain, having painful sex and just trying to deal with the pain. The doctor in the book is biased against using surgical treatments. So I think it is ironic that the book is a big advertisement for that doctor, however none of the women in the book were cured of the pain.

Now I have gone through the full vestibulectomy with vaginal advancement. And I am so happy I found a good doctor and now I have no vulvar pain.

Crystalraf · about 6 years ago

My doctor has a new book out on amazon, "When Sex Hurts, a Woman's Guide" Author is Andrew Goldstein and Irwin Goldstein

Toxictigress · almost 6 years ago

I've not yet read the book, so I can't speak to that. I have, however, been seen and examined by Dr. Echenberg. The subject of the surgery came up- it's not that he's biased against it, so much as he is trying to offer an alternative approach (something I very much wanted). He did tell me that the surgery is still an option for me, if his other treatment plans don't work (only 2 weeks into that so can't really say how it's going yet). Again, I've not read the book. It's possible he toned it different for me because he knew I, personally, wasn't against the surgery if nothing else was working.

Addressing your mention of the fact that they didn't outline treatment options: he told me in my appointment that this wasn't really one of the goals of the book, as each treatment option is specific to each person and should be addressed with a doctor familiar with pelvic pain.

(On a side note, the treatment regimen he's got me on includes a lot of what you've talked about on this website. Including physical therapy, which I start next week. Looking forward to seeing some of the results you guys have!)

Anyway, that's my 2 cents worth. I'll comment again after reading the book.

Banewton · over 5 years ago

Crystalraf can you tell us how many times you needed to see Dr. Goldstien? How many surgeries did you have? What was the total overall cost?

Debra · about 5 years ago

Has anyone read Headache in the Pelvis

Bekah · almost 5 years ago

It would be great if there was a link on here just for us to share books, websites, or other informational tools that have been helpful to us- maybe include the title and a quick overview or pros/cons kind of thing! Lots of good stuff with all of our different treatments. The "Recent Articles" link is really helpful- thanks for that! It's just that I've seen so many book titles, and they sound really good, but they are mentioned throughout so many case studies and comments that they are rather difficult to find. Just an idea. :)

Jul · over 4 years ago

Hi I appreciate all of the woman who are willing to come forward regarding
this condition. We need to find out as much as possible to continue to look for a cure.

Granmommy · over 4 years ago

Hi,I am new here...but have been fighting the VVmonster for 4 years. My best suggestions is find a doctor who does prolotherapy. My pudendal nerve was whacked out from childbirth, tailbone injury and joint hypermobility. There are very few doctors who even consider the pudendal nerve & how it affects our pelvis.This last year has been the best I have had since having the injections. Allergies,too, have affected me long before the vulvar pain started so I didn't link that together for a long time either. For me there is a combination of roots to this pain in the "hiney". I am thanking God that I am getting better every day with practicing what I have learned physically, spiritually... and the prolo treatments. It really was horrid a couple of years ago!

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