Will things finally get better? – Michelle Part 111

MY MISSION IS TO SHARE MY STORY- By Michele Part III

Unfortunately, during that time, I miscarried at six weeks. We were assured that it was unrelated and that there was no need for HPV testing. Given all our research into STD tests, we were confident this was true. But we still couldn’t help bundling it together as just one more low point. On a bright note, though, the miscarriage allowed us to take a closer look at that small white spot on my cervix. Yet the follow-up colposcopy showed no signs of dysplasia. This was great news. Puzzling but great.

The appointment

Then, it was the day of the appointment with the colorectal surgeon. He reviewed my STD Panel home Test health history and then the at-risk behaviours for anal disease. He strongly noted that I did not meet the criteria. When I mentioned what I had read about two-thirds of women who present with HPV on the cervix also present it on the anus, he wasn’t familiar with the literature and again said he thought I had nothing to worry about.

He performed a digital exam, found nothing, and told me to return in six months. Before leaving his office, I told him I’d had excessive anal itching off and on for the last couple of years, that I had tried various over-the-counter itch creams, and often thought it must be from my desk job or the weather or my bath or laundry soap, or being sweaty from a run outdoors or the gym. But now I had to wonder, did anal itching mean I had anal HPV? He said my guesses were probably right and told me to use baby powder. Although I was relieved to find nothing wrong, and I did feel good that he thought my guesses were right, the specificity of the HPV DNA test weighed on us.

Exams matter

We were now devout believers in the HPV PCR test, so that this doctor seemed to wave it off didn’t sit well with us. And baby powder? To tell a woman who just weeks earlier had miscarried. And just one ear earlier, she was on the brink of staged cancer, to douse herself in a known carcinogen. Well, that just left me feeling this STD doctor wasn’t for me. But six months later, I was in his office, having an identical visit. At the end of that visit, when it seemed the feeling was mutual, he referred me to a colorectal surgeon that specialises in non-digestive anal disease.

The new doctor

With this new doctor, after explaining how I got to him. His first action was to do an anal colposcopy, something he said he was surprised hadn’t been done yet. When a doctor quickly decides what he will do and declares his surprise that no other doctor has done this, you second-guess almost every patient-provider interaction you’ve ever had. Within seconds he spotted anal warts and commented how obvious the diagnosis was given my history of HPV-related cervical disease and excessive anal itching. And he also commented that baby powder was a bad idea because talc is a carcinogen, and the scent and talc can be an irritant to anal warts. His speedy diagnosis made me feel joyful and sad.

I thought, “Finally, a doctor who knows what they are doing.” My second thoughts were, “I have HPV anal warts?” and “I feel so dirty and so comically jinxed.” He had an opening in his schedule and said he could treat me that day. I called my husband to give him the news. We were laughing and crying. We laughed because of the craziness it took us to get to a doctor who knew what he was doing. And more laughing because, well, as much as we try to normalise an experience and put it in a clinical perspective, we are weak to our social tendencies, and anal warts are so embarrassing. But also, we cried because it seemed like HPV was the third person in our marriage, and it was so frustrating and scary that it just kept popping up.

Following the diagnosis

What is most telling of my visit to him was that he said that although I don’t fit the profile for non-digestive anal disease, my history of HPV-related cervical disease trumps any other index of measurement and that the persistent itching, even after changing soaps and using creams, was such an obvious sign of warts. I was so angry that the first anal disease doctor not only didn’t know this but also didn’t think to do a colposcopy.

Yet, I don’t solely place the onus on that first doctor. I couldn’t help but wonder why I hadn’t pushed for an anal colposcopy? What stopped me from speaking up? Teaching moments have been on both sides of the exam table throughout this journey. But I also see missed HPV Urine Tests and education opportunities. Maybe there is a gap between virologists and doctors. That’s why HPV doctors may not know about the value of lab tests and that they can be an aside to at-risk behaviour. Providers need to follow a standardisation of care.

Now

Although I am diligent with follow-ups for the “front and back“, as my husband and I say. And I am happy to say that I have no sign of any disease needing STD Panel tests. The 100 different ways my patient experience could have gone haunts me. If it weren’t just anal warts and the wrong referral had delayed life-saving treatment, and that one provider thought to do an anal colposcopy when the other didn’t…and I could go on.

All these what-ifs drive me to become involved at the national and local levels and educate as many women as possible. Ultimately, my mission is to keep telling my STD story. In some circles, CIN Ill is also considered stage 0, and we live in a culture where the words “stage” and “cancer” in the same sentence send chills up the spine.