Body Peace: Guest Post from Danielle Lavieri

Today's guest post comes from Danielle Lavieri, who blogs at http://daniellelavieri.wordpress.com.

Danielle Lavieri is a senior at Emerson College in Boston, studying journalism and health communication. Her passions include narrative medicine and medical storytelling, female empowerment, and the elimination of women’s health stigmas. She writes about the human condition, particularly her own condition, living with vulvodynia, a rarely discussed and widely misunderstood gynecological condition.

***

When I was fifteen-years-old I signed a Body Peace Treaty. The contract, artfully torn out of my copy of the December 2008 issue of Seventeen Magazine, featured a list of commandments that, by signing my name in cursive at the bottom, I agreed to follow. The glossy sheet of magazine paper, covered in the signatures of that year’s biggest celebrities, like Miley Cyrus and Lauren Conrad, still hangs on the bulletin board in my childhood bedroom.

By signing that piece of paper I agreed to always love my body. I agreed to accept my body for its own unique beauty. I agreed to never blame my body for a bad day I might be having.

Like any teenage girl, there were days when I’d look in a mirror and dislike the image that stared back at me. I’d eat a whole bag of Cheetos in front of the TV and immediately hate myself. These types of scenarios are pretty typical for a girl fresh out of puberty. These fleeting moments of self-dissatisfaction aside, I more-or-less obtained body peace. 

This was four years before I had any reason to break these vows. It was four years before I began to blame my body for the pain and extreme sadness that I felt on any given day. It was four years before I found myself unable to forgive my body for the ways in which it failed me on a daily basis, refusing to function normally.

Whenever I return to the house I grew up in and stay the night in my old bedroom, I am reminded of this contract. I’m reminded of the agreement I made to myself (and Seventeen, with 16-year-old Miley Cyrus as my witness) to always love my body, no matter what shape or size. But therein lies the problem; this Body Peace Treaty only addressed the body I see in a mirror, the external part of it that is shown to the world. It fails to address what’s inside, what for me is the most difficult part to accept.

In late November 2012, I began to suddenly develop symptoms of vulvodynia. I’d seen my gynecologist a few weeks before for a yeast infection, which was cured after a round of yeast medication. Although the yeast infection was gone, however, my symptoms of intense itching and burning in my vulvar area were not alleviated. As weeks passed, I continued taking oral and topical medications to relieve my symptoms. Nothing worked. Weeks passed and penetration became excruciatingly painful, to the point that I couldn’t even insert an extra-small tampon into my vagina, never mind have sex with my boyfriend. By January 2013, my gynecologist had run out of advice to give and medications to prescribe. I was alone in my struggle against this anonymous source of pain and agony, and would be for another four months.

I was diagnosed with vestibular vulvodynia by a vulvar specialist in April 2013. By that June I was secondarily diagnosed with pelvic floor dysfunction. By the time I began my junior year of college that fall, I had tried three different oral medications and two topical treatments, all without success. I had lost sight of my will to live. I had lost interest in many of the activities that I’d previously enjoyed. Most of all, though, I’d lost any trace of body peace or self-love that I’d had before. 

I hated my body for putting me through this pain. I didn’t understand why it was punishing me, or what I’d done to deserve this condition. These thoughts would circle my mind whenever I felt pain, and my lack of answers led me to believe that I would never get better.

That same fall, I began seeing a women’s health certified physical therapist for pelvic floor physical therapy. After a couple months I was surprised to see an improvement in my day-to-day symptoms. For the first time in over a year, I felt like I was getting better. Time passed and I continued to see improvement both my provoked and unprovoked symptoms. I began to feel emotions that I’d lost touch with—hope, faith, relief, and, above all, happiness. 

Although I still didn’t understand why I’d been dealt this unfair hand in life, I was learning to accept it and move forward the best I could. As the physical pain lessened, its emotional counterpart began to ease up as well. I started taking care of my body again, exercising regularly and eating right. 

Slowly, I worked toward acceptance of my body’s condition. I thought back to the Body Peace Treaty I had signed so naively years beforehand, and how I promised to always love my body. Much of my life returned to a new sense of normal, and I opened up to my friends and family about my condition. I began to write about my life with vulvodynia, finding solace and healing in sharing my story with others.

I am still seeking treatment for my vulvodynia; and while my symptoms have improved in many ways, I am not completely without pain. Similarly, I have been able to accept my condition and its role in my life, but cannot yet bring myself to forgive my body for the ways it has failed me. I have not reached total body peace; I still have a ways to go. 

The name of this website compels me—yatra yoni, meaning a journey of the feminine. The phrase, while euphonious, is also so true to my experience with vulvodynia and pelvic pain. The past two years of my life have been a constant journey toward self-acceptance and personal empowerment. Though I would never have chosen this path for my life, I am grateful to have made it through my initial suffering to find a degree of relief, both physical and emotional. 

As time continues to pass and I carry on in my yatra-yoni, I hope to find a deep sense of body peace, strong enough to sign my name on and promise to live by for the rest of my life.

***

Wow. Thank you, Danielle, for sharing. That was a wonderful post. Please comment below if you feel moved to do so, and if you want to see more writing from Danielle, you can find her here.

Guest Post from Trudy Triumph

Guest Blogger Trudy Triumph writes at www.neurogenicbladder.me    She blogs about her real life, not a medical textbook, to empower herself and others to shed the shame, get real and be proud. This is a post she wrote addressing Pelvic Pain.  It happens for all kinds of reasons and having a neurogenic bladder and bowel is just one of them.

http://www.neurogenicbladder.me/2013/06/yearly-physical.html

Yearly Physical

I had my yearly physical last week. Thanks to my handy-dandy Speedicath catheters, I have not had a bladder infection for a while. I feel great and vibrant. I have only two more weeks of school before summer vacation. I seem to be rolling along with my urological issues just fine, for which I am truly thankful! The world is my oyster!

At the appointment I sent in blood to be checked out. There was a listen to my heart, a look in my mouth, my weight and height, blood pressure and the rest. I know that during my yearly physical the other parts of my body are checked. My bladder, bowel and nervous system are not a big part of the appointment.

During the exam, the doctor felt my ovaries. I have read that one in seventy women get ovarian cancer. There are distinct clues for ovarian cancer, yet many times it goes unnoticed. The conversation with my doctor went like this:

One of the symptoms of ovarian cancer is constipation, well I have a neurogenic bladder so I am always constipated, by bowel is chronically sluggish.

The other symptom is feeling bloated.  Once again I said since I am chronically constipated but use stool softeners, the bloated feeling is not a foreign one to me.

Lastly she said that discomfort in the abdomen is another clue.  Again I told her that there are a lot of reasons that I get twinges of pain once in a while.   It is just a way of life with me.

After the feel of my ovaries was over, they were a bit tender (which by the way is another symptom) but the topic was dropped.  We were on to the next body part.  The whole scenario was kind of an out of body experience. I felt a disconnect because I like my family practice physician. I wish that these great ships in my life, my doctors, were a little more aligned.  I have so many questions.   How do I, a woman with a neurogenic bladder and bowel, know if I have ovarian cancer? Are there other ways I can find out besides the classic symptoms? Once again I felt a little vulnerable.

As well as I feel now, I realize that I am a bit physically fragile. After the exam, the topic of ovarian cancer was dropped.  As I left the appointment I wondered if I should have asked the main question that burned in my brain on the way home….Should I settle for not being able to feel the classic symptoms? 

This is a perfect example of how we with disabilities need to be our own medical advocates. I plan on taking the issue a step further next year during my yearly physical. One more note for my medical journal.

Thank you for sharing the word and helping women.

---

Thank you Trudy for sharing your story. A chronic health problem masking a potentially fatal one is a scary complication to face. Pelvic pain can be so complex; it's rarely straightforward to identify where the pain is coming from, much less what that sensation indicates. All the more reasons to ask "our ships to align," requesting our doctors to communicate with each other so we can receive the best care possible.