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
Part 1 of Interview with Dr. Echenberg
Dr. Echenberg explains the purpose of the Institute for Women in Pain (now known as the "Echenberg Institute for Pelvic and Sexual Pain"), an organization dedicated to treatment, education, and research for a variety of pain conditions in women and men.
He describes his vision that is taking shape of creating a multi- modality team to work together ina network, such as incorporating a rheumatologist, gastroenterologist, physiatrist, physical therapist, urologist, counselor, etc. This team would co-ordinate and communicate about the patient, thus taking a great deal of pressure off patients with multiple conditons that often overlap. It is important to note that this interview took place in 2011 and even today in 2014, it is still extremely difficult to raise awareness of most of those other specialists regarding pelvic and sexual pain disorders.
Dr. Echenberg further highlights the work done by the Chronic Pain Research Alliance, formerly the Overlapping Conditions Alliance, which has identified six co-exisgting pain conditions that he commonly sees in his patients: Vulvodynia, Endometriosis, Interstitial Cystitis, Fibromyalgia, Irritable Bowel Syndrome and TMJ.