I became hysterical and when my husband got home I fell down on the floor and just begged him to kill me because I couldn’t do my job, I couldn’t be a wife, I couldn’t take care of my child, and there was no reason for me to go on. – Jane (interviewee)
The doctors told me it was all in my head, that I really couldn't be having any pain because I was no longer testing positive for a urinary tract infection. I would pray before going to see each new doctor. I'd walk in the office thinking, "Please. I don't care if I have cancer at this point. Just tell me it's something so I can learn to deal with it or take steps to make it better." – Kat (interviewee)
I was diagnosed with vulvodynia when I was 20, but I know I had it much longer than that. My family physician had no idea that vulvodynia was a condition and even went so far as to tell me that the pain was all in my head. – A patient of Dr. Echenberg
When the pain first started, I silently continued intercourse. When the pain was severe, I just had to stop. We would try at times, but I couldn't stand the pain. Eventually, my husband quit going to bed with me. He would stay up at night watching porn and satisfying his needs. We were married only two years when the pain started. – Survey Respondent
Dr. Echenberg's Book
“Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships” is now available in paperback!
Can be ordered by sending check for $19.95 (postage included) to our office at:
Robert J. Echenberg, MD
623 W. Union Blvd. #5, Bethlehem, PA 18018
Please note that you are ordering "Secret Suffering" and make sure you include your return address
The burning inside my vagina feels like a blowtorch. - Interviewee for Secret Suffering
Feels like shards of glass during sex – Internet survey respondent.
That’s the bottom line for roughly 20% of the women in this country between the ages of eighteen and fifty. And that’s why the subject of sexual pain in young women is going to be featured on the award-winning MTV series “True Life” soon (we’ll let you know when).
Chronic pelvic/sexual pain is a devastating condition that can wreck marriages and destroy the self-esteem of both partners.
Secret Suffering is, first and foremost, the story of the women, and their partners, who are tormented by this condition. For too long, women who suffer have kept silent, gritting their teeth, hiding their tears, and enduring the stabbing, burning, searing pain of intercourse without breathing a word of this “shameful” syndrome to anyone. Or finally, pushed to the limit, a woman will just blurt out the truth to her partner, who is then forced to share the burden.
In a world that worships sexual gratification, with volumes written on achieving the ultimate orgasm or turning up the heat in long-standing relationships, such a situation can tear a couple apart. Below are comments from respondents to the Internet survey conducted by the authors about sexual pain and relationships.
I have been teased by ex-boyfriends, and pressured by them into sexual intercourse. I have been married and divorced, and my ex-husband made me feel guilty, and like less of a woman, for having this condition. I know my condition contributed to my divorce, though it was not the only factor. Since then, dating has been challenging, as I try to explain to potential boyfriends about the condition before we get into any kind of relationship.
This is my secret that I keep from everyone. I pretend that I’m normal with friends and lovers, particularly after the scorn I received from men early on. Once I get to know my partner then I tell them about the disease. In a relationship, I still suffer through the pain because I try to be a normal woman. I tell them that they have to be relatively quick with intercourse. Sensitive men get freaked out when you tell them that you have pain, and insensitive guys just don’t get it.
Eventually, the pain takes on a palpable presence, as if an ancient god to whom these mortals must bow and make sacrifice. Sometimes, the “Master” is beneficent, so the couple can freely express their love. At other times, like a tyrant with no mercy, each is pulled back to barely reach out and touch. The disorders that cause women to suffer pain in their private parts, the vagina, the vulva, clitoris, labia, urethra, are an insidious lot, wreaking havoc on the intimacy that keeps couples close.
The following comment is from a male Internet survey respondent.
My wife has been worn down by the many doctors who have failed her. She has basically given up trying to correct this situation. Our once heavy “chemical attraction” has been completely ruined. I am still interested … but she’s not! I have taken on every suggestion given to us … to no avail. I’m lost as to what to do. We may break up shortly after 15 years of sexual problems with painful intercourse.
Secret Suffering is the first book to:
- Open the floodgates to expose the issue of chronic sexual pain, which tears couples apart and destroys both partners’ quality of life
- Present in-depth interviews of suffering couples
- Focus not just on the condition, but on how it affects relationships
- “Connect the dots” to educate women about the interconnectivity of bodily functions that creates sexual pain
- Present successful methods used by couples and professionals to keep intimacy alive
- Urge parents to look for early signs of CPP in their adolescent and teenage daughters
- Let women who suffer know they are not alone, they aren’t crazy, and provide a proven blueprint for regaining intimacy in their relationships and management of the condition
We hope that you will find help and support in the pages of Secret Suffering to aid you on your journey to recovery and healing.
Foreword – Daniel Brookoff, MD, PhD
Preface – Robert J. Echenberg, MD, FACOG
1. Why This Book Had to Be Written
2. The Many Faces of Sexual Pain
3. Christin Veasley: Personal Pain and Professional Passion
4. Understanding Chronic Pain and Your Nervous System
5. Sexual Pain and Our Most Intimate Relationships
6. Bill: Sexual Pain from a Husband’s Point of View
7. Jennifer and Lisa: A Same-Sex Couple’s Struggle with Sexual Pain
8. The Dilemma of Single Women with Chronic Pelvic Pain
9. Our Relationships outside the Bedroom
10. Listening to Our Daughters
11. Lori: A Young Woman of Faith
12. A Tale of Two Men Who Experience Sexual Pain
13. Our Relationship with the Medical Community: The Dark Side
14. Into the Light: The New Paradigm of Chronic Sexual and Pelvic Pain Treatment
15. A Discussion of Pelvic Floor Physical Therapy
16. Amy: The High Value of Intimacy for a Cancer Survivor
Series Editor Foreword -Dr. Judy Kuriansky, Ph.D.
Appendix A: Sixty-four Tips to Relieve Sexual Pain
Appendix B: Pelvic Pain and Urgency/Frequency Patient Symptom Scale (PUF) and Vulvar Pain Questionnaires
Appendix C: About the Internet Survey Conducted for Secret Suffering
Appendix D: About the Experts Interviewed for Secret Suffering
Appendix E: Running a Pelvic Pain Management Program -Robert J. Echenberg, MD, FACOG
Appendix F: An International Plea – Agnieszka Serafin, Psychologist
Click the play button below to listen to the audio endorsement of “Secret Suffering” from Jill Osborne, President of the Interstitial Cystitis Network
Here is Jill’s full review of “Secret Suffering, that appeared in her ICN E-Newsletter.
When one of every five women between ages 18 and 50 in the United States have sex, it hurts, often badly. Until now, very few patients ever talked about their experience until a new IC hero, Susan Bilheimer, arrived on the scene. A chronic pelvic pain patient, Susan has been a driving force in creating this book and, partnered with Dr. Robert Echenberg, now offers hope and encouragement to the millions of women struggling with this condition.
Secret Suffering: Understanding Women’s Sexual Pain and How That Affects Relationships has it all. Patient stories, a husbands point of view, a same sex couples experience with pelvic pain, the dilemma confronting single women with chronic pain, faith and the poignant story of two men who experience sexual pain. They talk about the difficulties working with the medical community but the great hope promised by a new, far more accepting medical paradigm of chronic pelvic and sexual pain.
The appendix offers 64 tips to relieve sexual and pelvic pain!
I can’t say enough about this book. It’s now at the very top of books I will be recommending to patients struggling with IC and intimacy. This will, beyond any other book I can suggest, break your isolation and show you that you are not alone and that there is hope! It’s truly a must read.
Dr. Judy Kuriansky, PhD, Internationally respected clinical psychologist, journalist, and radio advice host, TV commentator and adjunct faculty member in the Department of Counseling and Clinical Psychology at Teacher’s College, Columbia University and in the Department of Psychiatry at Columbia Medical School. She is also the author of many relationship books and professional journal articles:
Susan’s book is hard to put down. Her accounting of her experiences reads as compelling as any novel, except it is that much more powerful and heart-wrenching given that it is real. Fortunately, the horror of the condition is balanced by Susan’s honest revelations and helpful tips (64 in all). Further, her connection with her co-author, Dr. Robert J. Echenberg, an enlightened physician, led to revelations of a multi-modal treatment approach to this chronic pain condition. As a result, their book should be in the hands of all women and their partners who suffer from this condition – which a research study reported can affect up to 13 million women, of all ages and in all racial groups.
John S. McDonald, M.D., Clinical Professor and Chairman Department of Anesthesiology, Clinical Professor Department of Obstetrics and Gynecology, Chief of Staff Harbor UCLA Medical Center, President Professional Staff Association Harbor UCLA, Clinical Professor Department of Anesthesiology, Clinical Professor Department Obstetrics and Gynecology, David Geffen School of Medicine, University of California at Los Angeles:
Wonderful thoughtful book … I enjoyed it thoroughly. I am so proud of you for taking the time and making the effort because you want to make a difference in other pain sufferers’ lives … because you have been through it all. Overall, life is about helping to make others happier and healthier. It’s important to realize that we are making progress yearly on the multi-systemed disease links and beginning to unravel the mystery of the pain pathways so that we can better block pain sensations.”
Lisa Martinez RN, JD, Executive Director, The International Society for the Study of Women's Sexual Health
Susan Bilheimer and Robert J. Echenberg, MD, FACOG have brought to our attention the challenges and severe frustrations of those with Chronic Pelvic Pain. The Secret Suffering will help women and men overcome many of those challenges and not feel so alone in their efforts to overcome such debilitating pain.
“. . . the book’s honesty and directness break open awareness of a critically important issue. With the Internet site (http://www.instituteforwomeninpain.com) and book release, one expects that Bilheimer and Echenberg have launched a much longer term project. With the conversation out on the table, the work of affecting policy, research, and access to care should begin to move. And many women and men will realize that their suffering does not need to be secret anymore.”
SciTech Book News
“Drawing on responses to an Internet survey, this book treats Chronic Pelvic Pain (CPP), a ‘silent epidemic’ said to affect some 15 million American women—and their male/same sex partners. Emphasizing that patients need to be heard and that doctors need to ask the right questions, Billheimer (a freelance writer who shares her struggles with CPP) and Dr. Echenberg (a CPP expert in private practice in Bethlehem, PA) discuss CPP’s physiological and emotional aspects and treatment options. The book includes tips to relieve such pain, self-assessment questionnaires, methodological notes, information on running a CPP pain management practice, and a glossary.”
Read or listen to excerpts:
Excerpt #1 – From Chapter 1
Audio: Click the arrow below to listen to the excerpt (7:25)
Excerpt #2 – From Chapter 2
Audio: Click the arrow below to listen to the excerpt (4:45)
About the Authors
Susan Bilheimer, author and chronic pelvic pain sufferer, created the original Secret Suffering website with the medical expertise of Dr. Robert J. Echenberg, a gynecologist and specialist in the field of pelvic and sexual pain since 2001. Dr. Echenberg’s practice, The Echenberg Institute for Pelvic and Sexual Pain, is located in Bethlehem, PA.