“I’ve always had regular smear tests but definitely wasn’t prepared to hear, ‘We will just go and get the doctor to speak to you,’ when calling for my results,” Laura Stevenson, 37, recalls when telling us about the day of her diagnosis in 2016. “Once the doctor came on the line she said, ‘You’ve tested positive for HPV. We need to get you in for a colposcopy at the hospital to understand how much the cells have developed.”
The diagnosis came as a huge shock to Laura and a flurry of questions raced through her mind. “I had no idea what HPV was apart from the fact that it was apparently linked to cervical cancer . Was it an STI? Were there symptoms? Was my fertility at risk? I had no idea.”
“I burst into tears and cornered my business partner who immediately calmed me down by throwing the statistics at me - that almost one in three sexually active women carry it. She also reminded me that five of our friends had it which put my mind slightly more at ease too.”
HPV, aka, the Human Papilloma Virus, is the name given for a group of viruses that affect your skin and the moist membranes lining the body. It’s surprisingly common and stats show that there’s a good chance that you may know at least one person who has it. “75 to 80 per cent of women (and men) get it at some stage in life,” says Mr Narendra Pisal, consultant gynaecologist at London Gynaecology . “In fact, it is so common that it is just a marker of having had sex in the past. In other words, it is not possible to avoid HPV unless you avoid any sexual contact.”
Despite it prevalence though, details surrounding its prevention and treatment are generally not that well known. What’s it like to actually live with it? We asked Laura to share with us her experiences and the main things she’s learned about managing the virus over the last couple of years. We also asked Mr Pisal for his expert insights regarding its different types and its transmission to help clear up some common misconceptions and shed some light on this hugely common but often misunderstood diagnosis.
1. It’s often symptom-less
Laura hadn’t experienced any symptoms before her diagnosis. This is common and therefore makes having regular smear tests all the more important for ensuring that any abnormalities can be identified early.
In the UK, all women who are registered with a GP receive a letter inviting them for an appointment at specific intervals - every three years for those aged 25 to 49 and every five years for those aged 50 to 64. For those aged over 65, only women who haven’t been screened since the age of 50 or those who have recently had abnormal tests will be invited. If you’re overdue an appointment, you can also contact your GP to arrange a test.
2. Not all types of HPV lead to cervical cancer
Much of the information out there is usually about HPV's link to cervical cancer . Raising awareness about this is incredibly important. Mr Pisal highlights though that it’s also worth bearing in mind that there are over 100 different types of HPV virus, only 14 of which are high risk types associated with the disease. “HPV does cause cervical cancer, but only in a very, very small proportion of cases,” he says. He highlights types 16, 18, 31, 33 and 45 as the most dangerous ones.
He also flags that it takes a long time for the virus to develop into something more sinister. “From acquiring HPV infection to getting cervical cancer, it takes between 10 to 15 years,” he explains. However, he cautions that early diagnosis through regular screening offers the best chance of stopping any irregularities in their tracks. “If you have regular smear tests every three years, the abnormality will be detected before it becomes anything serious. The risk of getting cervical cancer is extremely low if you have regular smear tests as suggested by your GP.”
3. HPV can lead to other problems too
HPV can also cause other types of cancers too if not caught soon enough. These include throat and anal cancer. It can also lead to vulval cancer however this is fairly rare. Stats from gynaecological cancer research charity The Eve Appeal show that there are around 1,000 cases in the UK each year, 40 per cent of which are linked to HPV (type 16).
The charity also highlights that certain types of HPV may increase the risk of developing vaginal cancer, but further research is needed to establish a stronger direct link. It notes though that around 75 per cent of vaginal cancer patients also tested positive for HPV. Types such as 6 and 11 can also cause genital warts and carry a low risk of causing cervical cancer as well.
4. It doesn’t matter how many people you’ve slept with
You can get the virus no matter how many people you’ve had sex with. It just takes one person, and as mentioned earlier, they might not even know that they have it. As Jo’s Cervical Cancer Trust highlights, “You can contract HPV the first time that you are sexually active and the virus can remain dormant for long periods of time, which is why continuing to attend regular cervical screening is important for all women.”
5. The infection in itself does not affect your fertility
This was a key concern for Laura when she first received her diagnosis. However in most cases, the presence of the HPV infection alone does not affect your fertility. “The virus is typically located in superficial cells in the cervix and does not affect the uterus or the fallopian tubes,” explains Mr Pisal.
6. Your immune system can fight the virus off by itself
“In most cases of HPV infection, the immune system will get rid of the infection for you,” explains Mr Pisal. “However, in some women, it may linger on and cause abnormal smears.”
Laura was recommended to make lifestyle changes when initially diagnosed to help support her immune system. “I was told that through a healthy lifestyle with regular exercise, healthy eating and looking after myself I could eliminate the virus,” she says.
Other modifications that can help include giving up smoking, (“There is evidence that giving up smoking improves your immunity to make it more likely that you will clear the HPV infection,” says Mr Pisal). London Gynaecology’s nutritionist Laura Southern, also advises upping your intake of immune system-boosting foods too. Hers and Mr Pisal’s recommendations include:
- Eating a large variety of brightly coloured fresh vegetables: “The brighter or darker the colour, the more concentrated the phytonutrients,” says Mr Pisal. “Aim for a ‘rainbow’ of vegetables daily, and a large variety across the week.” These include orange coloured fruits and vegetables such as sweet potatoes, carrots, squash, pumpkins, apricots and peaches, green vegetables which are high in folate (broccoli, kale, sprouts and cabbage and dark green leaves, e.g. rocket, spinach, watercress and fresh herbs) and purple and red veg and fruits as they’re high in lycopene (tomatoes, beetroot and blueberries).
- Eating oily foods for their high vitamin E content: These include avocado, coconut, raw nuts and seeds (almonds, walnuts, pine nuts and pumpkin seeds). “Include a daily serving – avocado on toast, a handful of mixed nuts as a snack and seeds sprinkled on salads or soup,” recommends Mr Pisal.
- Up your intake of vitamin A (retinol): “ Retinol is only found in animal foods – liver and offal and fatty fish,” says Mr Pisal. They therefore recommend eating organic lamb or chicken liver weekly and a bi-weekly serving of oily fish. If you’re vegetarian though, they advise increasing your orange-coloured vegetable intake instead - our bodies are able to convert beta carotene into retinol.
- Avoid or reduce sugary and processed foods: These (especially sugar) can weaken your immune system .
7. You’ll need a colposcopy
If you’ve had an abnormal smear test result, you’ll be referred for a colposcopy like Laura. This initially acts as a way to assess the affected cells and after that, to monitor how they develop.
Laura has yearly smear tests and colposcopies to see if her lifestyle modifications have worked in getting rid of the virus. Uncertain of what to expect, she understandably suffered from a few sleepless nights before her first one. “The test was uncomfortable and as always with any gynae treatment, wasn’t the most ideal situation, but it was over very quickly,” she recalls. What does it involve? “During the colposcopy, the nurse brushes an ink-like dye on the walls of your cervix to show the irregular cells and how they have developed,” she tells us. “The cells are then collected and tested.”
“I’m on my third test next month and hopefully I’m maybe one of the fortunate ones whose body can fight it independently. Some of my friends haven’t been as lucky, having to have painful lasering treatment and surgery to remove the cells.”
8. Condoms aren’t 100 per cent reliable
When used properly, condoms are highly effective in preventing the spread of diseases such as HIV and chlamydia. They can also reduce the risk of transmitting HPV too, however the protection they offer isn’t complete. “HPV infection can be sexually transmitted but can also be acquired by genital contact,” says Mr Pisal. This is because the virus lives on the skin and around, as well as in the genital area.
This also means that even if you’ve only ever been sexually active with a woman, you’re still at risk. As Jo’s Cervical Trust points out: “HPV can be transmitted through skin-to-skin contact in the genital area so anyone with a cervix who has ever been sexually active is at risk of contracting HPV and experiencing abnormal cervical changes. Thus, they should always attend when invited for cervical screening.”
9. The HPV vaccine is the most effective form of prevention
The HPV vaccination is offered free on the NHS to all girls aged between 12 and 18. It involves two doses. The new Gardasil-9 vaccination, a three-injection course, is also now available.
Although it’s encouraged to have the vaccine before first having sex, Mr Pisal highlights that it’s beneficial at any age due to the breath of protection it affords. “Less than 1 per cent of women are exposed to all nine types that the vaccine protects against. 99 per cent of women are therefore likely to benefit from it even if they are sexually active,” he says. “The [Gardasil-9] vaccine protects against 90 per cent of all cervical cancers. It also protects against 90 per cent of genital warts too.”
As the vaccine doesn’t provide full protection though, attending regular cervical screening appointments is still essential.
The bottom line
Never miss a smear test and if you have HPV, know that you’re not alone. It was only while working on this article that I was able to fully appreciate how common it is, the different types and how easy it is to get. Mr Pisal’s and Laura’s experiences have been eye-opening in terms of debunking some of the common myths surrounding the virus and shedding light on the range of ways to both treat and manage it. “I wish everyone knew what HPV was, unfortunately how common it is and that it can be managed through a healthy lifestyle and regular smears and colposcopy exams,” says Laura.
It’s a sentiment echoed by Mr Pisal. “We need to increase awareness about how common HPV infection is and how it can be dealt with by your immunity,” says Mr Pisal. “A lot of women feel psychologically traumatised by the diagnosis of HPV. However, the fact is it is a very common infection and almost everybody gets it at some stage of their life.”
HPV differs in its severity from person to person and effective treatment depends on the type you have and whether you’ve had an abnormal smear test. Regular cervical screening will alert your doctor as to whether there’s anything to be concerned about and ensure that any irregularities are addressed sooner rather than later - early detection if there are any problems is key. “I can’t stress enough how important a simple smear test is!” says Laura. It can make a huge difference to your prognosis.