Pacific Palisades, California

The pain began suddenly and inexplicably in my right groin in April of 2003. At first the burning and feeling of needles and pins digging into my body was moderate but with each passing day the pain became more intense. My gynecologist ordered a CT scan, blood work and ultrasound, followed by an MRI but all the tests came back normal. She sent me to urologists who ruled out interstitial cystitis. She then suggested an exploratory laproscopy in late May to see if endometriosis or fibroids could be causing what was becoming severe and more widespread pain. I was in mid-menopause and signed off on removing a right ovary where occasional cysts formed, the right tube and a healthy appendix as a “future diagnostic aid” because the doctor said my area of pain could be confused with appendicitis.

I left the hospital from the recovery room right after the surgery. I had always thought of myself as being a “good patient” with a high threshold for pain. I certainly did not ask for sympathy nor did I want to be waited on by strangers or family. I did not like to take pain medication because I do not handle narcotics well. They make me nauseous and dizzy and feeling out of control. I needed to be able to function to take care of my family, even though I was in need of care myself. The recuperation was harder than expected. Years earlier I went through two pregnancies and deliveries with ease but this was more difficult. My body was healing but the pain in my right groin was unyielding and, in fact, becoming worse. I could not believe it when my gynecologist said to me, “I’m sorry. There’s nothing more I can do for you.” She said she had heard a pain management doctor speak at a conference and she would call me with his name when she found it.

I called the doctor right away and when I went to see him at his office about an hour away from where I lived, he told me I had pudendal nerve entrapment without even looking at any medical files. He based his diagnosis on symptoms alone. He proceeded to give me trigger point injections and a needle in the vagina that reached into the lower tip of my spine. The needles were painful in and of themselves, but the relief was immediate though not long-lasting. By this time in late November the pain had become desperate. Even with the anti-convulsants that the doctor prescribed, I could not find a place of comfort. Suicide as a way of killing the pain entered my mind and on at least two occasions, I literally had to stop myself from driving full speed into the stone walls at LAX.

At about the same time, my insurance company informed me that they had never heard of such a thing as PNE and would no longer pay for any blocks. While I appealed in writing, I paid thousands of dollars out of pocket for relief. My new doctor was not always available so I found a gynecologist closer to home who was able to give me trigger point injections whenever I was feeling like I could not stand the pain another second. This went on for months and after I paid for nerve MRIs on my own that showed no discernible nerve entrapment, I lost faith in my doctor because I did not think the diagnosis was correct.

For almost a year, the pain was so severe that I twice ended up in the emergency room with unremitting pain. The IV pain medication caused me to vomit. I once overdosed on pain patches that an internist had prescribed who told me that I could use two patches (25mg each). I was sick for a week, throwing up and shaking like a leaf. I asked my female friends if they knew of any doctor who dealt with pelvic pain. I called doctors and pain clinics, and searched through web sites. My pain was not only physical, but mental, emotional, and sexual, too. My husband was unable to help me. He could not understand what was going on. He suggested I try exercise or yoga. He was angry that I did not want or desire sex. I spent every day hiding my pain, looking for help and finding none. I was unable to work. I had spent years as a news reporter and anchor in Los Angeles and I so wanted to go back to work, even part-time. But I could not. I could not sit comfortably and the excruciating pain literally took over my life. I only revealed it to my closest friends. I wanted to be strong. Doctors I had relied upon for many years could not help. I don’t think it was because they did not want to… rather, so little is known about women’s pain issues that they themselves had no resources to recommend.

I then found a neurologist who deals with difficult pain. He said the nerve MRI showed an adhesion on the ileoingual nerve and I had two choices…surgery to snip the adhesion or a series of blocks in the spinal column where the pelvic nerves begin that could possibly dull the pain. I finally found a pain management doctor who diagnosed my pain as Genital Femoral Neuropathy and has been treating me. I am not pain-free yet, but we have reduced the burning and I no longer take anti-depressants… a small victory, but a victory, nonetheless.

I want to join in the fight to help women in pain. Had I not been as tenacious and able to afford treatment, I might not have seen this day. It is simply wrong that as we approach 2006, men can get Viagra for erectile dysfunction but women with excruciating pain can’t even pop a pill for relief. It’s not in my head, buddy… it’s in my body and it hurts!