My Story

One thing I discovered since I developed pelvic floor dysfunction and pudendal neuralgia (PFD/PN) is that others who live with pelvic pain want to know the details of my story. That's how we learn about this unusual condition. Our stories connect us to this virtual waiting room filled with men and woman in pain. By sharing our own experiences we find out that we aren't crazy, that our pain is real with real physiologic causes.We discover that our pain can be isolating and unrelenting. But we also find out about treatments that might help us, physical therapists who are solely dedicated to treating pelvic pain, and some doctors with true expertise in the field of chronic pelvic pain. We discover too, a community of men and women who want to share their intimate stories with each other to make the journey a little less daunting and lonesome. There are friends out there you just don't know yet. But look around the links on this page and you will find friends, support and information.


Well, here is my story, and I'll be somewhere between brief and exhausting. My warning to you is that I am an RN but I'll be careful to not talk too much medical lingo.


If you've read other essays of mine, you've learned that I was very physically active. By age four, my father was strapping rubber galoshes to cable bindings on wooden skis. I remember running around with them on the fall grass, impatiently expecting our first snow.  I was hooked.  I developed a serious love for altitude and speed. Powder and moguls. Giant slalom and downhill racing. During college, a ski outing with the guys meant a challenge to a race at some point.  Often it would start with a bet " I can beat you down the mountain without making a single turn." That was enough to get me into high gear, and we were off.


Every now and then, the race was interrupted with a high speed crash, bumping, bouncing, sliding down the mountain and a forever lost ski. No problem, my body always absorbed the concussions of the bumps and speed. I felt like Mighty Mouse flying down those slopes and fortunately, I never sustained a serious injury.


I was attracted to the adrenaline sports. My other love was riding horses and wrangling with my burro and mini-mule. For years, I lived in the high desert and would take solo journeys for hours with my beautiful Arabian, Hudson.  My burro would tag along, stopping to graze on a wimpy little weed, and then ambush us when he discovered he was left behind. Those memories are poignant, and still make me laugh.


When I wasn't riding, I was hiking or running the mountain trails with my border collies. It was a life I was used to- a life of working as a pediatric nurse, creating a loving home with my husband, and an athletic and social life with my community.


Things abruptly changed four years ago. But that change was cooking; simmering for years and I had no clue. At the time, I was no longer working as a nurse. I had a successful in-home dog training business for four years. I loved the work. It was very similar to my work as a pediatric nurse. I taught families how to integrate their new pup into the household. I taught them the basic skills they needed and how to handle this active bundle of fur with razor sharp teeth. And just like we learn that dogs rarely bite "all of a sudden and for no reason", my pelvic pain "to be" was sending me tiny little messages for years, but the words were so faint and inconsistent, that I ignored them. They weren't interfering with my life at all.  Every now and then I had a little low back pain, and menstrual cramp pain that never resulted in a period. I chalked it up to being in my forties. Once in a while, my foot would go numb, "No big deal." I experienced some urinary urgency and frequency, but it was mild, and I assumed I was entering that era as well.  As a runner, I knew many women who "leaked" now and then.


Another activity that I loved, was cycling.  In 1985, I packed up my ten speed bike, flew over to Europe with some friends, and cycled all over  Europe for three months.  My body was finely tuned at that time, and I would ride hours a day without a worry.  Cycling, running, skiing and horses were a mainstay of my active lifestyle and certainly a big part of my identity.


In 2006, when my symptoms came on acutely, ( *A Pain to Explain) on that airplane ride, I was reminded of some strange symptoms that I was experiencing a few weeks prior.  My low back pain was getting more intense, and it hurt quite a bit when I was training dogs.  While cycling, I had a few episodes of numbness in my right leg, pain near my sit bones and an odd buzzing sensation in my crotch. The pain always resolved when my activity stopped, so again, I just didn't give it much thought. Once the pain reached critical, it came on  acutely and I was taken to the Emergency Room.


I was evaluated by a surgeon and upon exam he discovered that my pudendal nerve was very sore and sensitive. He thought that perhaps I had injured it from cycling and likely it would calm down. My symptoms were quite intense. I was unable to sit at all.   I had urinary urgency and frequency, rectal pain and total centralized pain.


I did not understand at all what was happening. Especially the symptoms of centralized pain. Sometimes an injury can send confusing messages up the spinal cord. The brain has a hard time decoding them, and it can over-react by sending alarm bells throughout your entire body. That is what was happening, and  the sensations I experienced were bizarre. Bed sheets felt like sandpaper. My skin felt sunburned. I could not sleep.  I could not find a comfortable position. I was exhausted and afraid of this acute and overwhelming sensory storm.


I am so fortunate to have a loving, intelligent and supportive husband. He is also a physician. He felt helpless during this initial phase and I could tell he was very concerned. But no matter what, he and I work as a team. We went into action mode and learned quickly that physical therapy might help me.


I found the best physical therapists (PT) in the field and I spent one week in San Franciso at the Pelvic Health and Rehabilitation Center. I remember after my PT assessed me, she told me that I was a "poster child for pelvic floor dysfunction."  All those years of adrenaline sports, combined with some structural imbalances set me up for this problem. Oh, and did I mention?  I have a skinny butt.


I spent two hours each day at PT which included myofascial work, trigger point release, and learning how to lengthen my short, tight pelvic floor muscles.  My PT taught me about trigger points, and how they impaired nutrition to the muscles and ultimately the nerves. I learned how connective tissue needs to be supple as it also aids in the flow of oxygen and nutrition to muscles and nerves. It was painful in the beginning, but after the first week, many of my symptoms calmed down. My PT was incredibly supportive and to this day, we still remain in touch.


I returned home and then continued PT locally with some outstanding PT's with expertise in pelvic pain.   Some people choose surgery, but I have not gone that route.  I often tell people this is an unpredictable journey, but most people recover or improve.  I spent two years in PT and I definitely improved but I am not cured.  Specifically, my sitting tolerance has improved. I can drive about 30 minutes at a time, although I still use a cushion. I have less urgency and frequency. Sex is a little more..."creative".  I am still on pain medication and I struggle with fatigue.  I walk about an hour every day with my dog. I practice tai chi, and I meditate. I gave away my bike. I snow shoe, but I don't ski. I nap. I read. I write. I knit. I nap again.


It has been over a year since I have gone to PT on a regular basis. In the past few months, my symptoms have worsened.  I feel hints of the centralized pain returning. I don't sleep well. I have decided to return to PT to see if I can get back to where I was about a year ago. The decline has been gradual and it's taken time to come to this decision again.


I've debated about blogging.  How much of my personal life do I want to share?  Did I have the physical and mental energy to do so? After four years of personal experience and learning, I hope that my sharing helps someone in their search for information and support.


My life has definitely changed. It is still rich and I am grateful. I live at a different pace now. I make more deliberate choices. I listen to my body.  I set boundaries. I express gratitude.  I struggle with fatigue and at times I get depressed. I count on my strong circle of support, and that includes those in the virtual realm.


I'm humbled by this challenge.  I encourage you to pay attention to those early signals as your body is talking. I encourage you to get the best help you can, and develop a trusting support system.
If you can't take a walk, take a step. I love walking slowly now.  Not all of this, has been bad.


Peace,
Cora.

A PAIN TO EXPLAIN

I am reposting this original post from when I was first diagnosed.  It tells the story of my early days of PFD. I'm happy to say that I am doing much much better.  For those seeking help, I hope you will take time to visit some of my early entries.  This post is featured in the book Pelvic Pain Explained by Stephanie A. Prendergast and Elizabeth H. Rummer.  They were the first physical therapists that I visited who diagnosed me and helped me on the road to healing.

In December, 2006 my life came to a butt numbing, crotch burning halt. My husband and I were on a flight to California. Halfway through the flight, I started to go numb in the “down there” region. I squirmed in my seat in fear, praying that we were close to landing. I leaned over and whispered to him that I was losing feeling in my crotch and thighs. Being an emergency medicine doctor, he went straight into E.R. mode. He thought I might be having a spinal cord emergency and that as soon as we landed; we may need to get to a hospital for a stat MRI scan.

Although I made it through that weekend without an E.R. visit, a few weeks later I had another episode, which in the famous words of my husband, “bought me a ticket to the E.R.” At the hospital, I learned I had injured some delicate muscles I didn’t even know I had, and apparently one of my nerves was a little ticked off too. The more formal diagnoses: pelvic floor dysfunction (PFD) with pudendal neuralgia (PN). Ah, such a clinical name for “pain in the ass.” I later learned that pudendal is the Latin word for “shame.” “Great,” I thought, “I have a shameful, painful condition. How do I explain that?”

It didn’t take long for family and friends to hear that I had an injury and was in bed on pain medication. Lots of pain medication. I called my dog training students and canceled sessions, made arrangements to have the house cleaned and the farm chores done. Like it or not, I was down for the count and closed for business.

When family and friends suddenly see an active, healthy woman flat in bed and unable to sit, they ask questions. “What did you do exactly?” “Can it be fixed?” “Why can’t you sit?” What hurts?” “How could this happen to you? You’re so healthy!” The questions were endless.

How you choose to respond to such questions is a very personal decision. I found with some family members, there was the “too much information” factor. For instance, for my older brother, just hearing “back pain” was plenty. Then there are the old soul friends with whom I was able to share many details. With them I’ve been able to talk about the dark, scary sleepless nights. I’ve whined about the lack of sex in my marriage. I’ve also shared with them the private details of PT, and the more humorous spin I tend to put on this whole deal.

When thinking about whom you tell and what you tell them, it is important to think about the motivation of the person asking. Is this a close friend with genuine concern? Is this person a snoopy neighbor or colleague? Is this person really a friend?

I’ve given all sorts of responses and some have been more tactful than others. I remember one male acquaintance kept asking for more details. Finally, I said to him, “If I tell you any more details, I’m certain you’ll blush!” He never asked me another question again. For a while I was telling people that I have a back injury with some muscle and nerve trauma. But, that explanation was met with numerous recommendations about back cures, which became tiresome.

Now, I am more relaxed about the whole thing. If someone asks me, I give a brief and vague response. This usually happens when I am in a public place and some chivalrous man will offer me his seat. Really, they still do that! I politely reject the offer, and if they persist, I say, “Thanks, I’m more comfortable standing, I have an injury”.

My PT gave me some incredible advice. I asked her how to respond to inquiries regarding my sudden need to stand up all the time and all the other life-style changes that accompany the spectrum of PFD. She said that I might ask, “What is it that you’d like to know?”  I love that response. It allows for a gentle pause, and time for the other person to respectfully reframe their question, or change the subject.

I don’t think there are any easy ways to communicate what PFD truly is to others in our everyday lives. Even our doctors and PT’s have trouble at times. What I think is most important, is that as we work towards healing, we do our best to surround ourselves with a caring support system. I have shed many tears in my horse’s fur on a quiet night in the barn. And ya know, he never asked “Why?”

Anatomy of a Name

Like an archaeologist, the anatomist delicately sections the sacrum, the final stage of the long, statuesque spinal column.  First he cuts through the dermis, fascia, then muscle. With surgical precision he continues to explore. He discovers a long, nerve that takes a tortuous course across what was the hip, around the thigh and then, this overachieving nerve splits into three directions. This powerful transmitter escorts signals to the genitals, the rectum and perineum. It is responsible for ecstatic pleasure, and more mundane functions that govern the bowel and bladder. With such duties, this nerve never rests. Why then, long ago, did the anatomist select the Latin word pudendal- meaning "shame" for such a gallant conductor?  If one is suffering from the pain of this overworked or injured nerve, perhaps it's time for a more respectful name.