OMG! Why did it take so long to diagnose?

My Mission is to Share my Story of Pain

My STD Pain experience begins in the usual way. Although screening guidelines today seem to be in constant flux, I represent generations of women who have followed the routine of the annual Pap smear and STD Test. In 2008, when I was 33, it was time again to take the annual HPV Test pilgrimage to the gynaecologist. My husband and I decided it was time to try for a baby. I wanted a doctor I could build a relationship with.

A friend loved her doctor, so I made an appointment with her. After a run-through of my husband’s and my sexual and general health history, my new doctor advised co-testing just to be safe.

This is where it got interesting and educational for me.

She asked what I knew about HPV, and sadly, all I could tell her was that it was an STD and there was a vaccine for it. But I knew I was too old for it, and I had never even heard of co-testing, specifically the HPV DNA exam. And besides, I was in my 30s and a loving, monogamous marriage. I naively thought STDs were what young, single women in their 20s worry about. Since I entered my 20s as a virgin and came out with just a handful of sexual partners and a glowing, spotless Pap history. I was feeling pretty confident I had no concern for an STD.

I was someone who had never missed a Pap test, a graduate student at an Ivy League university getting my doctoral degree in health education. I’m the daughter of a doctor who had always eaten well, been active and knew very well the dos and don’ts of good health. But there I was, learning about STD Home checks and subsequent cancer risks I had to be concerned about.

The doctor applauded me for my diligence in getting my annual Pap. She also pointed out that it wasn’t all I could do to protect myself. Of course, I eagerly agreed to co-testing. I am so grateful to her every day for suggesting and encouraging this.

Waiting a week for the results was a walk in the park.

When my doctor called, she told me my Pap was normal. I congratulated myself. With so many normal Paps under my belt, I always felt like I was winning some race, beating some record.

But then that feeling quickly went up in smoke. She also told me I was positive in a test for high-risk strains of HPV.

I was stunned. My mind raced. How could this be? My Paps have always been good.

Wouldn’t I know if I was carrying around something as dangerous as a high-risk virus?

And my husband? All I could think of was how much I loved him and how awful I’d feel if I infected him. My doctor said I should tell my husband. She told me that women don’t always share their HPV status because of the stigma. I was sure my husband would be supportive, but this was our first time dealing with something like this. I was thinking how awkward it would be.

When I told my husband, his first words were, “Feel so badly. What if I gave this to you?” His second thoughts were, “Isn’t there a vaccine we can get?” and “How do I get tested so we can treat it and get it out of our lives?” At the time, the vaccine was not approved for men, and even if it had been, he would’ve been too old for it. And this is when we learned that there is no screening for asymptomatic men.

This led to us spending many hours learning from test data all that we could–that approximately 79 million people are infected with HPV at any given time, that it’s easily transmitted, and that even abstaining from intercourse doesn’t fully protect you. We felt it could be so unfair that the combination of choices, bad luck, and lack of education from our previous lives could have the ability to affect our current lives so drastically.

The results of that first round of STD panel co-partner testing led us to postpone starting a family. My doctor told me to return in six months. Six months later, I was in the same spot -normal Pap, HPV positive.

I was not fighting this off.

We were all stumped by this. All the information about reasons you don’t fight it off didn’t apply to me. The reasons listed were poor diet, unhealthy weight, and smoking.

All my doctor could say was that stress lowers your body’s ability to do its job and that HPV is very common. We were encouraged to keep living our healthy lifestyle and advised that it would probably go away by the next follow-up. But six months later, at the second follow-up, my co-test showed low-grade ASCUS, and I was still HPV positive. I was still not fighting this off. Just the opposite! It was getting worse.

My doctor didn’t want to play the waiting game any longer. She referred me to a gynaecologist who specialised in treating STDs. I had to wait three weeks for the appointment with the specialist. No one was sure how long I’d been carrying this unwanted guest. We couldn’t wait to get rid of it now that we knew it was here.

Both my husband and I attended the appointment. She did a colposcopy and noted that a majority of my cervix turned white from the acid solution. This led to a biopsy, and she told us what the next steps would be depending on the results, with the scale varied from watchful waiting to total hysterectomy.

You try not to think the worst.

In just 12 short months, we’d gone from co-testing to be safe, to follow-up, to low-grade ASCUS to biopsy. It seemed we were pressing on full steam ahead in the wrong direction. My husband and I began to cry and think about where we’d want to see ourselves in 5, 10, 20 years. We talked about the children we didn’t have yet, the doctoral program I hadn’t finished, and how our lives would change if it did turn out to be advanced cervical cancer.

When she called to give me the STD Swab results, she told me it was CIN III. She cautioned me not to get wrapped up in the labels- even though some say it’s stage 0- and that what was most important was that it was caught early. She said I should have a LEEP. I can tell you I couldn’t schedule that appointment fast enough. It all seemed so precarious; one small wind sway, and I’d be on the wrong side of the cancer fence.

How can someone go from over a decade of normal Paps to low-grade ASCUS to CIN III in just one year?

What about all those Paps I got? Did they always need a spot? And then came the more logical questions. How did I not know about co-testing? I live in New York City. You can only walk one block if you see a public health message for any ailment, but I’d never seen one for co-testing. And how about any doctor I’d ever been to? Why didn’t they mention it to me? Did they even know about co-testing? And what blew me away was that I seemed so healthy, so asymptomatic.

The LEEP went very well. She told me to return in three months for a Full STD Urine exam and then again three months after that.

It had been six months since all this.

We were given the go-ahead to start trying for a baby. This was great news. This is when I felt strong enough to take action and turn the hours of research and emotions that my husband and I stumbled through into leadership action because I didn’t want anyone else to have my experience.

As I got deeper into learning everything I could about HPV DNA exams, I was fortunate enough to learn something that no other provider had mentioned – that two-thirds of women who present with high-risk cervical dysplasia also present with HPV strains on the anus. At my one-year post-LEEP appointment, I told my doctor about what I’d read, and she said she knew about this but felt I didn’t meet the at-risk criteria because I had no history of anal sex.

We talked about the “superhighway of transmission”, as she called it, between a woman’s front and backside, but even so, she thought I had nothing to worry about. She must have asked me a half dozen times if I was sure I wanted the test. I think she was more uncomfortable than I was. But since we all thought I’d fight off the cervical HPV with exams after that first co-test, and I wound up with CIN III, I didn’t want another surprise.

Waiting for the results was exhausting.

Seven days later, she phoned me, and her first words were how sorry she was about my STD Profile report. She told me that my cervical Pap came back with low-grade ASCUS. If that wasn’t enough to stop me in my tracks, she said the anal co-test showed inconclusive Pap, but the HPV Type report was positive.

I was crushed. My cervical dysplasia came back. And now I had to deal with a sequence of HPV Anal Tests? Then she told me that she was embarrassed for thinking I was nuts and “one of those patients” when I asked for the anal co-testing because I had taught her something. I have to tell you, as a health educator by training and profession, this was exhilarating. I had taught a doctor something! But as a patient, that’s not what you want to hear.

Then she told me that she felt my about with HPV was beyond her scope, and it would be best if she referred me to a gynaecological oncologist. She asked if I had a paper and pen to write down the information, and when I didn’t say anything, she asked if I was still on the line. I had been walking down Fifth Avenue during rush hour and cut into Central Park to sit down. I can tell you exactly what I wore that day and that it was warm and sunny. Even though the park was full, children were playing after school, and puppies and strollers were at every turn. It was as if someone had hit the mute button on the entire city. It was dream-like. All I could hear was the hollow din of the word “STD Oncologist” ringing in my head.

I made that appointment in record time!

Two days later, when I noticed how late I was, I eagerly and apprehensively took a home pregnancy test. Eager because I so badly wanted it to be positive. Apprehensive because what if my STD Profile result is positive? Didn’t we have enough going on right now? Within seconds, the little plus sign appeared. I was officially 100 per cent pregnant.

I screamed with delight. Finally! After seven months of trying. Success!!

That week is forever divided into two separate occasions for me: I’m referring you to an oncologist, and I’m pregnant.

I’d be hard-pressed to think of two other words you’d least want to hear in the same sentence besides “pregnant” and “oncologist.”

At the oncology appointment, she did a colposcopy. It did show one small spot that turned white, but she felt it was best to let it be undelivered. She thought I should return at the start of my second and third trimesters to ensure it hadn’t advanced. As for the results from the anal co-testing, she referred me to a general colorectal surgeon who couldn’t see me for another month. It seemed like a long wait, given how weak my body seemed at keeping the cervical dysplasia under control. But we also were beginning to understand the passive-aggressive nature of HPV and how one month in “HPV years” is nothing.

Unfortunately, during that time, I miscarried at six weeks. We were assured that it was unrelated to my HPV DNA Type exam. Given all our research, we were confident this was true.

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.

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

He performed a digital STD Blood Test, found nothing, and told me to return in six months. Before leaving his office, I told him I had excessive anal itching off and on for the last couple of years. I tried various over-the-counter itch creams and often thought it must be from something else. I thought it was my desk job, the weather, my bath, laundry soap, or being sweaty from a run outdoors or the gym.

But now I had to wonder, did anal itching mean I had an anal Virus?

He said my guesses were probably right and told me to use baby powder. Although it was a relief he found nothing wrong, and I did feel good that he thought my guesses were right, the specificity of the HPV DNA detection weighed on us. We were now devout believers in the HPV Variant method 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 was on the brink of staged cancer, to douse herself in a known carcinogen, well, that just left me feeling this 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.

With this new doctor, after explaining how I got to him, his first action was to do an anal colposcopy. He was surprised it 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 STD Research Test and diagnosis were given my history of HPV-related cervical disease and excessive anal itching. He also commented that baby powder was bad because talc is a carcinogen. 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, “Have 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. Laughing because of the craziness it took for 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. We cried because it seemed like the HPV was the third person in our marriage. It was so frustrating and scary that it just kept the STD-at-home topic from popping up.

What is most telling of my visit to him was that he said that I don’t fit the profile for non-digestive anal disease. My history of HPV cervical disease trumps any other index of measurement. He also said the persistent itching, even after changing soaps and using creams, was an obvious sign of warts. I was so angry that the first anal disease doctor didn’t know this. He also didn’t think of doing 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 need to see education opportunities. There may be a gap between virologists and doctors. That’s why doctors may not know about the value of lab tests and that they can be an aside to at-risk behaviour. And providers need to follow a standardisation of care.

Although I am diligent with follow-ups for the “front and back”, as my husband and I say, I am happy to say that I have no sign in my STD reports of disease. The 100 different ways my patient experience could have gone haunts me. If I hadn’t started with a new provider, if she hadn’t been educated about co-testing, 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 in educating as many women as possible. Ultimately, my mission is to keep telling my HPV Anal exam story. In some circles, CIN Ill is also considered stage 0. We live in a culture where the words “stage” and “cancer” in the same sentence send chills up the spine.