When Cervical Cancer Side Effects Bring Life-Altering Changes

After completing my oncology protocol and hysterectomy for my cervical cancer, I developed a rectovaginal fistula. This meant that due to the radiation I received, my colon and vaginal wall merged. I like to think of it as when you burn two plastic sheets together, they become one. At some point, a tear began to form, and it developed into a fistula. 

How did I find out about the fistula? I can’t pinpoint the exact moment, but if I look back, I do remember a very sharp pain after I sneezed about four weeks after my hysterectomy. Later that week I noticed a different color in my urine and some pain each time I went to the bathroom. I called my doctor and he said he would like to check it out. By the time I went I was passing small clots, I was unaware if it was due to the surgery or an infection. When the doctor ran his tests, and the pelvic exam being the most painful one, he confirmed that a fistula had been formed. It was about one centimeter in diameter. 

Photo from GynecologicSurgery.com

A week after my initial exams, I started passing stool through my vagina. That part of it has been the most horrible part of my life after cervical cancer treatment. I was told to wear diapers during this period, but I didn’t want to, so I started using maxi pads. I would be needing to change them at least 4 times a day. Going to the bathroom was painful and uncomfortable. I was battling pain and infections during the next couple of months until all testing was completed to see the course of action my doctors wanted to take. I started carrying an extra pair of jeans and 2-3 pairs of underwear because of the accidents. Doctors told me not to go to work during this time, but I really didn’t want to stay home. I needed to be doing something to take my mind off it. I made a strategy plan; I parked my car next to the nearest bathroom at my construction site. That way it was easier to get to my emergency bag and I had my brother working close by so I would call him up if I had any accidents that might require extra assistance. I also told two of my male coworkers what was going on with me just in case anything went wrong. 

The most traumatic moment for me was when they had to perform the colon enema test on me. I remember I was that table being pumped full with barium and then just noticed my legs getting wet. I began crying and told the doctor that I was peeing myself. He said, it’s okay and they can clean it up. But I couldn’t stop crying and then I started to panic. He put his hand on my head and told me to breathe, he said he knows how painful this is but he needs to find out what is going on. When it was over, there were nurses in the room cleaning me up, that’s when I noticed that the bed and the floor were covered in my feces and barium, that came out of my vagina. To this day, it has been the worst experience I have ever had. 

I remember changing in the examination room stall crying, feeling embarrassed, and with the desire to hug my brother who was waiting for me. There have been many beautiful things in my life, but that hug, that hug made me feel so safe. The doctor explained the extent of the damaged I had and that my surgeon would recommend getting a colostomy. 

I am grateful for my colostomy, it has made my life less complicated. 

Karla with her brother

Living with a tiny fistula, has changed my life, but has not stopped it. I did try Crossfit for two weeks but had to be checked since I started bleeding a bit, which showed that the fistula had become larger. So, now I stick to low impact activities, like walking and stretching. I have little to no infections and luckily I am off Tramadol and Dexketoprofen, which was the protocol I had for pain management.

My fistula is still here. In my last exam the doctor said it was barely detectable. I am still not sure if it will heal, statistics do not support this idea, so we know that my ostomy is becoming permanent. Which I don’t mind.

Karla Chavez is a Cervivor Ambassador, Cervivor Español Co-Lead and a 2022 Cervivor Champion Award recipient. Karla is a civil engineer in her home country of Honduras and she’s an amigurumi enthusiast.

How Cervivor Empowered Me

My doctor called me on November 11, 2020, and told me over the phone that I had cervical cancer, and after I slid down the kitchen counter and physically got up off the floor, I started Googling ‘cervical cancer’. I knew where my cervix was and I knew I had cervical dysplasia in my 20s that had gone without treatment as it disappeared and the next pap was normal. But all of a sudden, I was a cancer patient. I was going to have a radical hysterectomy and bilateral oophorectomy. I was going to be genetically counseled and tested to find out I had a BRCA gene mutation. My body had turned against me. When I learned cervical cancer and HPV were linked, I was convinced I was contaminated and dirty and bad. It was the height of the pandemic and I was alone and scared. 

I found Cervivor on YouTube first and watched every video. Later I found Cervivor on Facebook and joined I’m A Cervivor! and introduced myself. Between the website and all the Cervivor stories, I became informed. I understood my options and I understood what my experience might be like. I had this knowledge and a sense of community, and I felt empowered. I was ready to fight cancer because of Cervivor.

The Cervivor community was a lifeline on those nights I was afraid I was dying. It is still a part of my daily life today, after my one-year cancerversary. With Cervivor, we laugh together, we cry together, we learn from each other, we share our stories, we live our lives, we are still living, and we honor those who are no longer with us. Now that I am a survivor of Stage 1A2 cervical cancer, I am helping to support others by offering my shoulder to lean on and sharing advice and experiences with others going through the same diagnosis.

Cervivor is my support and hope. It felt like finding my family because I am an orphan and have no living family. They were at my side in the OR as part of my visualization exercise for a successful surgery. They were there as I dealt with the consequences of my surgery. Suddenly, I had a beautiful diverse rainbow of sisters from all walks of life, and we were all joined by our experiences and making sure that no one else would go through what we had gone through if we could help educate others. I learned something from every single one of them and continue to learn from them at every meetup and through every call and text to a Cervivor sister. 

Cervivor has changed my life for the better. Programs from Cervivor comforted me after surgery and inspired me to take control of my body and my health in ways I had never done before. For example, I’ve lost 54 pounds and I’m healthier than the day of my diagnosis. I may not have any female reproductive organs in my body anymore, but I am still a strong bad@&$ babe. I am still fighting and adjusting to my body after cancer treatment, but I am also fighting for others, and I will never give up!

Cervivor taught me that cervical cancer actually gave me a superpower – the power to save lives by educating people on how we can end cervical cancer. Our stories matter. We are personal experts in our stories of cervical cancer and how much it takes from us. Cervivor teaches us to give back by raising our voices. Knowledge is power. The information and resources about HPV and cervical cancer from Cervivor can encourage vaccination and give patients the support they need. 

Cervivor prepared me and supported me, and now I am paying it forward in my community and online. For me, “Informed. Empowered. Alive.” is one of my life’s purposes now. Thank you, Cervivor, I love you! Each and every one of us, no matter where we are in the cervical cancer experience – from those who have had dysplasia and an HPV diagnosis to those of us who have metastasized – it is an honor to count myself amongst us. We are empowered! Let’s make cancer pay!

Pixie Bruner lives in the Atlanta metro area and is already a one-year survivor of stage 1a2 cervical cancer. She is a roleplaying game author, poet, historian, and academic guest lecturer on Classical Studies. She is a NASA Night Sky Network award recipient for education. Her hobbies include art, stargazing, dressing like a cat, coloring (including her hair in random crazy colors), and she is a voracious bookworm under five feet tall. Pixie advocates for cervical cancer awareness by sharing Public Cervix Announcements to total strangers. She is currently starting a joint project with other survivors in her area (Teal Sisters of GA) to fight the stigma of HPV, crush the ignorance of cervical cancer and HPV-related health issues, encourage HPV vaccination, and educate on cancer screenings and treatment for everyone.