Real People Stories – Nicki

I understand that many things can cause an STD smear test to return abnormal. Everything from hormones to thrush to the cell changes we all fear. Some of these abnormalities can be caused by the high-risk HPV virus, which causes normal, healthy cells to change. It’s common for these changes to revert to normal by themselves, but sometimes they don’t, and sometimes these changes can progress to cancer. The new HPV tests identify if one of these viruses is active in your body.

Most women have it at some point, and your body’s immune system body near it. If you test positive for HPV, it just means that they need to be a bit more vigilant with monitoring things as it means a higher risk, but by no means indicates that you will get cancer, so it isn’t something to freak out about.

My mum also had ovarian CA125 type cancer, so I can understand how anything to do with cancer is really scary. My mum was diagnosed with ovarian and bowel cancer in her mid-30s, and in her late 30s, she won her battle, so there are some happy endings.

They are doing everything they should to monitor and care for you. In the unlikely event that anything progresses further, it will be picked up and treated early. Even if your HPV Variant result comes back positive, try to stay positive. It just means a slightly higher risk factor. Most of us who find our way to this STD forum have tested positive and are here to support each other, and there is nothing wrong with feeling anxious or scared about things. That’s what’s are here for.

Olivia

HPV, even the high risk kinds, will almost always clear on their own. The UK has screenings to keep a better eye on people with HPV. These STD screenings can lead to cell changes. However, even these changes can disappear.

The way my clinician described mine was like clearing a cold sore on your cervix. Even some of these cell changes can be low grade and harmless. They can clear on their own.

Mine did pretty much fully before I even got my colposcopy. HPV is super common. 80% of people will run into some strain of it. About 40% of women or those with cervixes will have the high-risk type. Very few of these STD cases turn into cancer, and that’s what’s important to keeping up with screens.

What I want to tell you is do not disclose your status. You can enjoy your life. You can have casual sex. HPV is so prevalent anyone participating in sex is putting themselves at risk, and most of the time, even the high-risk ones do not lead to cancer. The issue is when people cannot fight off the infection, so that’s why they will receive treatment if needed.

Live your life

Live your life and sleep with other people. Educate yourself on HPV, discuss your anxieties and fears with your GP, and openly communicate with your partner if it will ease your mind. GPs often reassure people that they do not need to disclose because they understand its prevalence and how it often leads to no symptoms or side effects. It can even be missed in a smear test even if you know you have it.

So, if it is giving you this much anxiety, speak to your GP. Let them explain to you how normal it is to have and how it shouldn’t from doing things, just like having a cold doesn’t stop you from doing most things either.

Good luck to you, and please be kinder to yourself!

Anna

Please be gentle with me! 

I am a lesbian, and I am 26. And I am completely honest, as I haven’t had my situation optimally. 

I had one shot of the old generation of Gardasil in 2014 when I was 22.

After a private (non-NHS test), I was told I had HPV 52 and 66 in March 2018. This came as a huge shock to me; I have never had anal sex.

The reason I had the test was that I was booked in for an NHS cervical smear, but had read it can spread to your anal canal. 

Being the anxious person I am, I must check that out, too.

After getting the news, I have been too scared to have any cervical tests.

I have not had sexual intercourse in the time since I found out about my HPV. However, I have been sexually assaulted twice by a man in that time in a way that could potentially have given me HPV (although the forensic doctor I saw said this was unlikely). I have also kissed people. 

So my situation as it stands: I need to have both a year follow-up for anal virus infection and have an HPV smear test cervically. I also need to have the Gardasil vaccine. And I also want to know if I have it orally, but I am struggling to find someone who would perform that STD test.

I ask now because my life has changed in the past few weeks. I have fallen in love with someone, which has devastated me. 

Discussion on Future Plans and Concerns

My STD plan genuinely was to stay celibate for the rest of my life because I wouldn’t risk getting any other strains, which the vac doesn’t understand won’t give my partner HPV.

The latest generation of Gardasil protects against 52, so I wouldn’t pass that on if my girlfriend were immunized. However, it does not protect against 66, and I could transmit this to her. I realize that 66 is not as worrying as most other high-risk strains.

Being sexually active, I am also concerned about having other HPV strains. I likely developed some limited immunity to 16 and 18 in the years after receiving the single shot of the STD strain vaccine. Nonetheless, I engaged in sexual activity before receiving it, and I have kissed people and experienced sexual assault since then.

I wouldn’t pass the worst ones on to a woman if vaccinated, but I am scared about the others. I will discover I have other strains at some point in my life.

This is such a difficult situation for me. If I were heterosexual, the STD risk to my partner would be so much less, but there’s there’s no way I can be with a man. I have no desire to sleep with men. 

Emotional Impact and Reevaluation of Life Plans

I had accepted that I wouldn’t see anyone again and had tried to plan my life around that, but I’d accidentally met a woman I had fallen in love with. It’s devastated at the thought that I could never be able to have sex again. It has opened a painful Pandora’s trying to find a way that having sex again might be okay. It was so much easier to kid myself that I could be happy and fulfilled if I stayed celibate my whole life.

I was even at the stage of saying to myself, ‘Well, the only thing that is the end of the world here is if you have 16 orally because your mouth and oesophagus are the only part of your body to worry about which can’t decant surgically, (and it’s just 16, rather than both 16 and 18 that is the worry orally, according to the STD research).

I had resigned myself to possibly needing a hysterectomy/removal of the vulva and rectum. And needed a colostomy bag, and I was okay with that as long as I didn’t get cancer. But being in a relationship doesn’t allow you to think like that. 

Does anyone know the answer to this question? When one or two strains of HPV are active (as was the case for me in March 2018), would you expect any past infections to be present also? 

I can live with having 52 and 66. I believe a vaccinated woman might accept the risk of 66 if I were to get tested regularly. But I am terrified of the worst strains. Usually, do research STD health issues very thoroughly because it just scares me too much.