Real People Stories – Nora

Destitute, upset. In June 2017, I had just learned that my boyfriend was cheating on me. The following week, during my visit to the HPV Test gynaecologist after 3 years without control, she noticed an abnormal spot on my cervix. She asked me, “Have you been going to bed very recently?” “. Shocked by this question, I asked him why. She informed me that I had a “bruise” on my cervix and that additional STD tests needed to be done. I was 21, and I felt scared. Sometime later, she told me that I had contracted variants 16 and 18, as well as high-grade dysplasia (CIN 2 to CIN 3).

This STD gynaecologist was very expeditious and explained this situation to me, which was completely unknown to me, telling me about: “the 2 most serious forms of HPV”, “pre-cancerous cells”, “colonisation”, “biopsy of the uterus”, “operation”. She told me to make an appointment with an obstetrician surgeon to perform a biopsy.

I burst into tears. And I called my boyfriend, I told him all this, he cried, we cried, and then he left me a few days later out of fear and stupidity. I was ashamed and told no one about it except my mother, who accompanied me to the appointment. I felt like a plague victim.

Summer of Uncertainty: Navigating Medical Appointments

I had a series of medical HPV appointments throughout the summer. The doctors were all on vacation, I had to wait a long time between all my appointments, and I needed more STD information. I was stressed. First, I had an appointment with the surgeon.

My gynaecologist so misinformed me that I thought I was having HPV surgery that day. When I arrived, they informed me that they needed to conduct a biopsy before the operation and schedule an STD appointment with the anesthesiologist. I felt lost.  The surgeon took an HPV biopsy of my uterus; it hurt, very hurt. Then, when my legs were still in the stirrups, my vulva exposed, he sighed, “What a shame, high-grade HPV in such a pretty thing… you are too young to experience that”. I was upset. Did he think I was going to take that as a compliment? I felt very ashamed and a little scared. I continued my summer and didn’t tell anyone about this episode.

Struggling for Information and Respect

A few weeks later, towards the end of August, I had an HPV appointment with the anesthesiologist. After reading my file in front of me, he looked at me and exclaimed, “How can such a pretty young woman like you have such a vicious STD disease?” Sometimes life is unfair.” So, would that have been fair if I had been a not-very-pretty woman? Meeting after meeting, I could no longer stand this intrusion into my private life. What I wanted was information, about the operation, about the future, about what conisation was, etc. I left that appointment crying, more lost than before.

You will say to yourself, “She always cries,” but I have never felt so disrespected during this period. Doctors took me from one to the other, and no one kept me informed. Above all, I felt ashamed because I believed my boyfriend had left me because of it, like I was dirty, and this illness was just as dirty.

Surgical Intervention: Conization and Recovery

At the beginning of September, I underwent general anaesthesia to undergo a procedure to remove the pre-cancerous HPV corrupted cells lodged in my cervix. My mom was with me. I was still very scared. I had surgery, and my surgeon came to see me in my room to tell me that everything had gone well. He took the opportunity to flirt with my mother more than to inform me about everything that had just happened. Once again, I felt disrespected. But I was so high from the anaesthesia that I didn’t notice. I was in class the next day, barely 20 hours after the operation. I wasn’t told it could take several days to recover.

Post-Surgery: Recovery Challenges

I was led to believe that this HPV operation was very minor and common, so I had to be on my feet within the next few hours. Also, I felt unwell, my stomach hurt, and I experienced contractions. I was bleeding and felt faint and pale. I would have preferred to have been informed more about all of this.

Emotional Impact: Betrayal and Stigma

My ex messaged me, saying, “I talked to Max (his best friend) about your HPV problem; glad you’re healed; at least you can have peace of mind now”, which infuriated me. He spread my STD issue to his friends without understanding I wasn’t cured, and having part of my cervix torn off hardly brings me “peace of mind”. The condescension from everyone disgusted me.

Finding Empowerment: A Supportive Gynecologist

However, I don’t think high-grade HPV 16 and 18 should be minimised.  Since then, I have found a new, very competent gynaecologist who took over this whole STD situation from the beginning and who explained to me all the stages I went through. It did me a lot of good. I felt listened to and understood. And I felt a little less ashamed of what I had experienced. I dared to speak about it afterwards. I even manage to downplay it when I talk to people about it or when I talk to my boyfriend about it. And I had become too used to people telling me it was nothing.

Looking Forward: Exploring Alternative Care

Today, my gynaecologist refuses to insert an IUD because I have never been pregnant. However, I refuse to follow this decision. I am actively seeking appointments with other health professionals to gather the information needed to make my own decisions. And I am asserting my autonomy instead of letting doctors dictate my life.

I have made an appointment with a midwife and am excited to see how it will go. Most importantly, I wish I had determined to seek out information at the age of 21 when I discovered I was infected.  But I was afraid and didn’t want to contradict the medical profession or “bother” them with my questions. I was especially helpless when I heard the word “cancer” potential. I felt like a little girl who had to learn everything.


My Journey with CIN3 and HPV

I am 39 now and learned last year, after an STD smear test and biopsy, that I had CIN3. In May, I underwent a colonisation procedure, which went well, but during a follow-up visit in June, there was a suspicion of abnormal cells at the top of the cervix. I had to wait for complete healing before verification in September.

I travelled abroad to try and forget about it, but the reality of the wait often crept back into my mind. When I underwent an HPV check-up in September, the STD results were relatively positive. They did not confirm the suspicion but scheduled a routine follow-up six months later, in February 2018. After that visit, my gynaecologist asked me to repeat the tests to ensure I was not carrying HPV. She informed me that a six-month follow-up interval would be too long if the tests were positive.

So, I waited for the results again.

When I received the results, they confirmed that I had the oncogenic papillomavirus, but fortunately, there have been no more suspicious cells since the colonisation procedure. I felt a mix of emotions: relief that my immune system responded well after the operation, but also anxiety about carrying the virus that my gynaecologist referred to as the “cancer virus.”

I am unsure of the next steps since it’s been about a year since my conception, and I tested positive for the oncogenic papillomavirus. To complicate matters, my std gynaecologist is currently on leave for 15 days, leaving me uncertain.

All these events came after four years of battling STD health issues, including blood problems in my right leg due to a rare childhood illness. I am exhausted from nearly five years of fighting for my health now.

I wish all of you lots of courage. Keep fighting because life is beautiful!