National Vulvodynia Association

The details of my initial struggle with vulvodynia are no more or less important than many others. Though the various treatments and new pelvic pain diagnoses that followed seem outrageous and perplexing to my loved ones and friends, I know from speaking with other members of this special community that it is not that different a story from many of you.

Who would guess that the most interesting aspect of my story with vulvodynia is where I found myself now – in the middle of my journey – somewhere between sick and healed?

A few months ago, my nearly two-year battle with pain finally landed me in the office of a competent gynecologist who was a genuine specialist in this medical area. For three hours we talked about my different levels and types of pain. Did it feel sharp or sore, tingling or numbing? By the end of the appointment I had a cotton-swab test, cultures, blood drawn and two different pelvic exams. I was physically spent, but the mental exhaustion would ultimately be what cut me off at the knees.

While I felt so blessed to have at last found a competent physician, he found that I was actually in worse shape than I thought. In addition to vulvodynia, I now had lichen sclerosus and ulcerations, as well as pelvic floor muscle dysfunction and possibly pudendal nerve issues. With referrals for physical therapists and physiatrists in hand, I walked out of his office in a daze – caught between conflicting emotions. I felt great relief that I was in the right hands, but I was also angry that my previous doctors hadn’t noticed these seemingly obvious problems. On top of that, I felt hurt by how far it had progressed and what I had lost.

I didn’t realize it for several days, but I was slipping into a deep depression. I no longer had the will to keep up with my life. I went through the motions at work, took my new medications with little hope of them working and made dinner for my boyfriend without the usual zest I have when cooking. I didn’t try to spend time with my family or friends. I just didn’t care.

When it finally sunk in that I was in emotional pain, I was lucky enough to be standing in front of the NVA newsletter with a small piece about another woman’s story and depression. The article lifted me up just enough to want to help myself break out of the fog. I started a gratitude journal and every night before I went to bed, I found at least one thing that I was grateful for in that day. It could be as big as feeling huge pain relief, or as small as seeing my puppy’s face when I got home from a hard painful day. Although this exercise helped me go to sleep with positivity in my heart, I still had an overwhelming sense of loss and isolation.

At the end of April I went to a retreat for women suffering from chronic pelvic pain. I learned a lot there, but the most important thing I came away with was the quality friendships I made – one in particular that changed my entire view on being sick. It felt amazing to meet others like me, especially young girls facing many of the same issues I face. One woman told me her story and I felt so inspired. She looked me in the eye and said, “You will get better. I swear to you, you will get better.” Instantly, I believed her. She also told me a story about a dark time in her life when she stumbled on someone who pulled her out of the fog. Her friend had placed his hands on the far left and right of his desk and told her, “You are here. And you need to get here. And everything in between is getting you one step closer to healed.”

Over the course of the weekend I kept replaying these words in my head and I started to understand. All the new diagnoses and treatments were just extra clues to the puzzle. I will keep piecing them together until I’ve solved the whole darn thing.

I was talking about some of my coping mechanisms when one of the younger girls came up to me and said, “You are such an inspiration!” I was floored! Me? Ms. Cries-A-Lot? That’s when I realized that we’re all just rungs on a ladder. No matter how low you think you are, someone else might be looking up and thinking they would rather be there.

So now I take it one day at a time and fill my day with as much positivity as I can. I no longer look at the road before me with fear of the seemingly endless obstacles I’ll meet, but with a feeling of endless possibility and hope.

We embark on many journeys in life – some by choice, others by chance and some that seem forced upon us. How we choose to navigate through these situations speaks loudly of who we are and who we can become.

The pain started in the fall of 2008. After 14 months of doctors’ visits with no answers, I was finally diagnosed with interstitial cystitis/painful bladder syndrome, then pelvic floor muscle dysfunction and finally vulvodynia. My life hasn’t been the same since.

I had an active lifestyle as a full-time volunteer minister and small farm owner. I was happily married to the most wonderful man. I enjoyed working with and riding my own horses, as well as helping friends with theirs. That active life came to a crashing halt when the pain started. I thought my life was over. I even contemplated ending my life. Instead of choosing to learn from this journey, I simply wanted to end it. Thankfully, with much help from therapy and medication, plus support from my husband, family and friends, my journey continues. I hope that by sharing my experience I can in some small way help others.

I have learned so much about myself these past few years. For one, I’ve always considered myself a bit of a wimp. Was I ever wrong! I didn’t realize it until recently, and still doubt it on some days, but I now know I am a lot tougher than I ever thought. No one could go through what I’ve been through without strength. I’ve learned that being tough doesn’t mean that you can’t ask for help. Before the pain, I was the person others asked for help, not the one seeking it. After, I felt virtually useless and incorrectly assumed that no one would want to help me. Was I ever wrong! In fact, I found that people wanted to help because they loved me for me, not because of what I could do. I now know that despite my disability, I am still a useful person. It just takes a bit more creativity.

This journey has also taught me that some parts of life are uncontrollable. I cannot control the fact that I have these pain disorders, but I can control how I face these obstacles. I’ve realized the importance of staying informed, seeking treatment – both conventional and alternative – and never being too timid or embarrassed to ask questions or for help. I’ve spent a lifetime helping others, but now I am comfortable focusing on my own needs before trying to meet the needs of others.

My journey continues. I see my doctors on a regular basis and am still experimenting with medications and therapies. I’m able to spend a few hours a week in the ministry, and our horses are happily enjoying retirement on our farm.

A friend recently sent me a card that read, “Like a month-old macaroon, you are one tough cookie.” For better or worse, this has become my battle cry!

Dear NVA,

In fall 2010 I was told that I had vulvodynia. I finally saw a specialist about a year later who diagnosed me with Provoked Vestibulodynia and recommended surgery. She also recommended that I join the NVA. The NVA connected me with a support group and various resources that helped me to prepare for my surgery. I went into the procedure completely confident that this was the right treatment path for my condition. My surgery was extremely successful and I am now completely pain-free!

When planning our wedding, my fiancé and I wanted to do something in lieu of the traditional glass-clinking to get us to kiss during the reception. We knew another couple who took donations for an organization and cause that they cared about. After my surgery, I was reading an NVA newsletter and remembered how much pain I had been in, and how lucky I was to have such a successful treatment outcome. I tearfully asked my fiancé if our donations could be sent to the NVA. He agreed that the NVA had helped me so much and that we shouldn’t forget that although I was out of pain, there are many women still suffering and that more research is needed.
Here is what we told our guests: “Instead of the traditional glass-clinking to get the bride and groom to kiss tonight, Martha and Justin have decided that in order for them to kiss, you will need to make a donation. You probably know that both Martha and Justin have had surgery in the past year, so they have seen first-hand how important donations to medical charities are. The organization that they will be donating to is the NVA, a medical charity that has helped them. Please donate as you are able. The more donations, the more you make them kiss!”

Enclosed are the donations that our guests contributed at our wedding reception.

Being pain-free has completely changed our lives, and I cannot thank the NVA enough for having the resources and information available when I needed them most.

Sincerely,
Martha & Justin R

My name is Katie Conrad. I was 24 when I was diagnosed with what I now call “The Big V” and I thought my life was over. The journey of procuring what seemed like a life sentence of a diagnosis was certainly wrought with pain, confusion and financial expense, and finding an effective, liveable treatment plan was definitely a longer, more painful road paved with as many disappointments as triumphs. However, when your life is full of promise (I had just gotten my first job and was engaged) and a doctor hands down a verdict of chronic pain, you learn one thing: you can’t give up!

My vulvodynia began with a rash that occurred after intercourse with my then fiancé, Kevin, who is now my wonderfully supportive and loving husband. I woke up the morning after with a burning sensation, took a peek with my hand mirror and proceeded to freak out when I saw unusual redness. I made an appointment with my gynecologist who examined and tested me for herpes, gonorrhea, the whole gambit. It’s a very strange thing in life when you look back on a situation and say to yourself, ‘Man, I wish I had herpes,’ because at least there is a clear treatment plan for that. It’s something thousands of doctors have diagnosed and treated with confidence in young women who could at least, when armed with a Valtrex script, wait out a resolution.

This was not the case for me. After about my 12th pelvic exam, two rounds of herpes medication and many cold baths, my regular gynecologist was smart enough to realize this was out of his league. Unlike many women in my situation, I was lucky enough to not be strung along on the false hope of infection medications for very long. He sent me to a vulvovaginal specialist to figure out why, even when the rash was gone, my pain was not.
I saw the very best vulvovaginal specialists in the country and some local doctors along the way. At first, just having a doctor give my horrific problem a name – vulvodynia and pelvic floor muscle dysfunction – was a relief. But after this brief feeling of relief passed, I began my quest to find some kind of respite from the constant pain. Could I dare think that I might find a cure?

I am a relentless person and all I wanted to do was find someone who was cured – that one woman who could honestly say that she had been there and came out on the other side. I felt that if I could just meet her or even hear her story that something must be out there for me too. I joined several support groups and read everything I could get my hands on. I talked to as many women as I could and tried absolutely everything. And you must. You must try absolutely everything within your means, and never stop thinking positively that this treatment might be your cure. One thing that is frustrating about vulvodynia, or any chronic pain problem, is that there isn’t one true treatment protocol that works for everyone and some of the therapies are experimental. Instead of viewing this as negative, I considered it a collection of possibilities. As long as there were more treatments to try, there was still hope for me.

Eventually I took a medical leave from my awesome new job. Two months later, I was taking an antidepressant and undergoing physical therapy. I was about 75 percent pain-free most of the time and very thankful for this progress. But again, I didn’t stop there. You cannot ever give up. I decided to take the advice of a woman in my support group and obtain another opinion from a local doctor who took my insurance. Her treatment recommendation tipped the scales and I returned to work at the end of my leave 90-95 percent pain-free on most days.

In the end, I had seen nine doctors and two physical therapists. I tried almost every medication and diet suggested to me. What helped me return to work and back to being a bit of myself was a combination of an antidepressant medication, physical therapy and topical cream that I still consider magical in nature.
I wish I could say that I remained in that nearly pain-free place forever, but life changes. Stress wreaks havoc on your body. You forget you have a “chronic pain problem” and you don’t keep up with your maintenance therapy. I can say that I now possess the tools to get myself back to that place, and I often do.

In addition to never giving up, I’ve learned many lessons. I have learned that my husband loves me for so many other reasons besides sex and that we can get through anything together. I have learned how to say ‘no’ to overextending myself and ‘yes’ to taking care of myself. I have learned empathy towards others who are suffering that I honestly didn’t have before this happened to me. Mostly, I have learned that you can really live your life with chronic pain when you use the resources you have available, lean on the people who really love you and approach everything with hope.

Sometimes I do still cry to my husband and ask him why this happened to me. He often answers: “I think this happened because you have a strong voice and maybe you can help other women. Maybe you were meant to help others.” I hope I have here by sharing my story today.