I’m slightly concerned that I keep going to doctors that I pay to tell me I’m at risk of dying. I’m not an anti-vaxxer and if you are, I might piss you off. That is entirely not my problem.
When I first saw my primary doctor, I just wanted a check up, but left feeling like I might be dying soon. It must be her superpower. She saw my medical history as complicated, and needing special attention. I wake up and my back and knee pain often reminds me that I am very much alive and growing older.
Having Factor Five Leiden means some Eastern European (caucasian) family member gave me a genetic predisposition to clot blood really easily. I’ve always looked at this as a wonderful ability to heal quickly, but to a doctor, it kinda sounds like they need to check all sorts of things for my risk of pulmonary embolisms (I’ve had them), heart attack and stroke. Anytime my symptoms seem suspect, I can expect an EKG and D-Dimer blood test, followed by a CT scan and ultrasound of my legs to look for clots. The threat of blood thinners is always on my horizon.
I’ve had scary news before. Often it comes with a serious look on the doctor’s face, and a moment when they look at me, more than they look at my chart. “Don’t worry, this is serious, but the risk is minimal.”
Yeah, minimal enough to give me your undivided attention, pause a moment to strike fear in my heart, and annoy me enough to know I’m not currently dead. I’ve learned that doctors will only hospitalize you if they’re afraid you won’t survive on your own. If they aren’t keeping me, they really want me to change, but not enough to take away my freedom.
My doctor told me about a test result after sitting down and looking me in the eye. Naturally, her demeanor contributed to my freak out. The numbers that stood out to me were that 70% of cervical cancer and precancerous cervical lesions started as HPV type 16 or 18. I have type 16. My diagnosis felt like fear of death.
I went through several days of guilt, shame, fear, and blame placing. I wondered how my kids would survive without me. I freaked out about whether or not I needed a larger life insurance policy, then felt so lost at the idea of all I still need to teach my boys about life on their own. Will I leave with them knowing how loved and worthy they are? Then I remembered I don’t gave cancer and it could take 10 years or more for HPV to develop into cancer. And then I freaked out again, not knowing exactly how long I’ve had it.
I’m a lucky girl. My medical professional sister invited me to the American Cancer Society HPV Summit Presented by the Farrah Fawcett Foundation on July 26, 2019 at the California Endowment. It was a training for medical providers. They didn’t know I was attending as a patient and shop talk went into their external experience with the LEEP procedure and the smell involved. It was shop talk that reminded me why medicine never appealed to me. I left that event feeling hopeful and informed. I hope to share some of my knowledge with you.
What is HPV?
There are about 150 strains of Human Papillomavirus. Of that number, there are more than 40 genital HPV types. It is a virus, much like a flu that’s passed from skin to skin contact. It’s highly infectious with greater risk to people with autoimmune disorders.
Your immune system can fight it, as mine currently is. It can take up to two years to clear your system, but you can fight it off. Most people that get it, will actually fight it off without ever knowing they had it.
Most HPV strains are low risk and do not cause visible symptoms. There are about 40 strains that can become cancerous. I happen to have one, and it’s one of the most aggressive types. HPV can lead to potential infertility, incompetent cervix and a colposcopy with biopsy every year, on top of a pap smear every 6 months, to monitor any change to the cervix.
What are the odds?
About 90% of sexually active people in the US are infected with HPV. It looks like about four out of five people will get HPV at some point in their lives. About 75% of cases happen through intercourse. One of the more sobering statistics I heard at the summit was that most girls will contract HPV within two years of becoming sexually active.
What does testing look like?
Testing for HPV looks like it needs some serious work. Being found positive was kind of a fluke.
In early May of 2019, I complained to my alarmist doctor about irregular menstrual bleeding, in hopes of getting a menopause diagnosis. I’m done making babies. My periods had been irregular and painful for several years, and I hoped I was starting menopause. I’m not. My doctor ran all sorts of tests she normally wouldn’t. (Still no answer on why, but treating the symptoms.) Checking for all STI’s was part of her process. Not everyone gets an annual pap smear and testing for HPV isn’t standard, even if you do get an annual Pap smear.
When the results came back, she sat at my level and made eye contact to tell me I was positive for on of the most cancer forming types of HPV: type 16. The build up is usually worse than the diagnosis. Doctors should work on this.
Most of the population has it, and the only test for it is a Pap smear. In rare instances, some doctors may order an anal Pap smear. This only happens if your provider knows what to do, and if you are willing to own up to having anal sex. (I believe we should own our kinks.) I’ve also heard anal Pap smear results can be unreliable. My source may be unreliable. Ask your doctor when you talk about that thing you like.
Like the flu, there isn’t a cure. You simply have to wait it out as your body fights it.
I’ll spell it out for you.
There is no standardized process to test men for HPV. The only way to consistently tell if a man has it, is if he has contact with someone that did’t have it, and her vaginal pap smear comes back positive.
I will never know where exactly I got it from, or how long it’s been in my body. It may have happened in my marriage, or during my relationships after it. It also doesn’t matter. It’s an epidemic with the amount of people that have it. It can, but does not always cause cancer.
HPV and Cancer
Before you start mounting that high horse, yes, this is commonly spread through sexual contact, including hand to genitals. I’m a woman in my 40’s. Expect a high sex drive and confidence in my kinks. The bigger picture is about cancer.
HPV infections can lead to cervical, vaginal, and vulval cancers in women. It can show up as penile cancer in men. Men and women both experience throat and anal cancers stemming from HPV infections.
As HPV spreads throughout countries, where the cancer ends up has everything to do with sexual taboos. One country might see more cervical cancer in women, but this translates to oropharyngeal (mouth and throat) or rectal (anal) cancer in men that live in more sexually liberal countries.
What can I do to protect myself?
Barrier contraceptives like a traditional male condom, the female condom and dental dams are most effective at preventing the spread of sexually transmitted infections. At the same time, HPV can be found at the base of a penis, making barrier methods ineffective. You can find female condoms here. I won’t get a kick back on your purchase. This is the only FDA approved brand, available in the US at this time.
At the Summit I attended, I heard stories of women that had only had one sexual partner in their lifetime. They still contracted HPV. They still fought cancer because of it.
With my diagnosis, I get to have a Pap smear a couple of times a year. Until it clears my system, I will have an annual colposcopy and biopsy of my cervix. Any abnormal Pap smear will lead to a colposcopy and biopsy. Not pleasant, but there’s comfort in knowing I’m closely monitored so there’s an aggressive approach if any cells become cancerous.
I also started taking multivitamins with folic acid to help my body fight the virus. I’ve had to get in control of my stress and blood pressure. Adequate sleep is also important. I need a strong immune system to fight it.
I also opted for the HPV-9 vaccine. The vaccine helps combat HPV strains that lead to the majority of HPV related cancers. Getting my three shots also means I’m less likely to get reinfected or introduced to the types of HPV I don’t have. I don’t have more than one strain, and prevention from the rest matters to me.
What can I do to protect my kids?
Get them vaccinated early. At 11 or 12 years old, it’s just two shots. The series should be completed by the age of 13. The antibodies last about 10 years, and you can get booster doses. As much as you want to believe your kids aren’t having sex, I want you to understand that one day, they should be having sex. It’s the natural order of growing up.
Getting their shots early is to help them build immunity before they need it. You wouldn’t expose your kids to chicken pox, meningitis, or hepatitis after they start school. Vaccines are given as early as they can take it, so their body knows what to fight ahead of time.
Older bodies aren’t as adaptable, and while it took a while for the CDC to recommend the vaccination for older people, they have. I’m getting my third shot in mid April, covered by my insurance.
Older teens need three shots as well. Younger children have a stronger immune response to vaccinations, so fewer doses are needed.
My Kid1 told me about online forums of kids trying to get vaccinated when they get older, because they had parents that didn’t allow them to as children. At 11, they should have some say in their health, and as they become older, you can expect to be excluded during doctor visits anyway. They’re being educated on their own. Be part of that discussion.
I’m not dying today. I appreciate my doctors being aggressively proactive, but it also means I get to slow down and give myself reality checks, backed by reliable science.
Blog Post Update: I had my first positive test result for HPV type 16 on 5/7/2019. My next test was on 3/16/2020 and it’s negative. It’s cleared my system.
Blog Post Update Part 2: In November 2021 it came back. HPV can clear your system, but it never really goes away. It can come back with stress, and that is entirely likely in my case.