Apr 16, 2013 - 7:19 pm
I was diagnosed with stage 3 vulvar carcinoma. The diagnosis completely came out of left field for me. I have never been diagnosed with HPV in my entire life. I have always gotten regular checkups especiallly when I was pregnant with all three of my children I was sure to get through tests for all possible diseases. When I look back on it now I would say my discomfort began after the birth of my first son. Itching, discomfort but I did not pursue the issue too much besides my routine exams. Slowly over the next 7 years it began to get worse, at times around my period I noticed a painful area which felt like sensitve scar tissue. Embarrassed for now real reason I didn't really talk to anyone about my problems. Soon it began to cause intimacy issues between me and my husband, but I was still too embarassed (and probably scared) to find out what was going on. Eventually it became so painful that I cried everytime I urinated, even walking was beginning to become a challenge. One night I had reached my breaking point with pain and decided I needed to go to the emergency room. That was not the right direction. They took tissues samples and before the results came back (2-3 days) they told they though I had herpes. At this point in my life I had been with my husband for 13 years and had absolutely no reason to questions his fidelity. After talking to the doctor for a little bit she seemed to begin to doubt her diagnosis and wanted to run some more tests before they discharged me. I was mortified and in extreme pain, I refused futher treatment took my herpes perscription and left. I never filled the perscription because of the shame and embarrassement I felt I didn't look for another doctor until my test results from the ER returned. They all returned clean, they tested me for every possible STD and every one of them came back negative. So I was right back where I started. Tired of being in pain I finally opened up to friends. That is when a friend referred me to his wife's gynecologist. The man was fantastic and honest. He told me he didn't know what was wrong me. That he couldn't believe I was walking around with this lesion because it was so painful he didn't want to touch me to begin with he felt bad. So we through some strong antibiotics and antivirals at it none of it worked. So it was time for a biopsy, my doctor was just as shocked to discover it was cancer as I was. I met a wonderful oncologist, due to the pain my surgery was scheduled within two weeks. This turned out to be a good thing because when they tested my lymph nodes those too were cancerous. So many decisions to be made at that point. Radiation would be required it I opted for another surgery to remove more tissue from the left wall of my vulva and remove right lymph nodes for testing. Or radiation on my entire hip and vaginal area. I opted for the second surgery first, my right lymph nodes were clean and since removed more tissue from my vulva I would only need radiation on my left hip area. After 6 weeks of radiation therapy my next CT scan found me clear of cancer, April 2011. Since then treatment has started early menopause (I'm 35) and has caused all kinds of leg and hip problems. For being an independent, athletic individual this has been hard to accept. My left leg is the worst it gets extremely stiff and soar. My hips, lymph node area, and ovaries have random spasms of pain. Radiation completely killed my left ovary, it's now just a painful ball of scar tissue that hurts even from the outside. I'm lucky enough that it has not turned into lymphedema but I still struggle everday. It's hard for me to find information about long term side effects and how to deal with. I thought I would get better, I thought my life would get normal again but after two years I'm trying to accept this will probably not happen and I need to find a new normal.