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Lesbian with HPV

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anna123
Lesbian with HPV

Please be gentle with me! 

I am a lesbian and I am 26.

I am going to just be completely honest, as I haven’t managed 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 thought that I must check that out too.

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

I have not had sexual intercourse in the time since I found out about my HPV, although 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 HPV and to have an HPV test/smear test cervically. I also need to have the Gardasil vaccine. I do also want to know if I have it orally, but am struggling to find someone who would perform that test.

The reason I ask now is that I feel that my life has changed in the past few weeks. I feel as though I have fallen in love with someone, and it has absolutely devastated me. 

My plan genuinely was to stay celibate for the rest of my life because a) I don’t want to risk getting any other strains which the vaccine doesn’t cover, and b) I don’t want to give my partner HPV.

The latest generation of Gardasil does protect against 52, so I wouldn’t be able to pass that on if my girlfriend was immunised. But it does not protect against 66, and it is possible I could give this to her. 66 is not as worrying as most of the other high risk strains, I do realise. 

I am also worried about having other strains because I have been horrid and just had drunken sex in my life with quite a few people. I probably would have had some limited immunity to 16 and 18 in the years after I had the single shot of the vaccine, but I was sexually active before I had it, and I have kissed people and been sexually assaulted since.

I wouldn’t be able to pass the worst ones on to a woman if she were vaccinated, but I am scared about the other ones. I feel as though at some point in my life, I will discover I have other strains.

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

I had accepted that I wouldn’t be with anyone again and had tried to plan my life around that, but I’ve accidentally met a woman who I have fallen in love with, and it’s really floored me. It’s made me absolutely devastated at the thought that I could never be able to have sex again, and has opened a really painful Pandora’s box as I try 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 esophagus are the only part of your body to worry about which can’t be removed surgically,’ (and it’s really just 16, rather than both 16 and 18 that is the worry orally, according to the research).

I had resigned myself to possibly needing a hysterectomy/removal of vulva and rectum -> colostomy bag, and I was okay with that as long as I didn’t get cancer. But being in a relationship doesn’t really 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? 

If I do just have 52 and 66, I can live with that, and I think there’s a possibility that a vaccinated woman would accept the risk of 66 if I were to go and get tested regularly. But I am so terrified about the worst strains.

I usually do research health issues very thoroughly but I can’t with this because it just scares me too much.  

What should I be scared of here? 

Is it reasonable to have a girlfriend who is vaccinated and then for me to go and check as often as possible that the HPV isn’t active again? How much of a risk is it to me if she were to give me another high risk strain (of course not 16/18/45 because I would be vaccinated)? 

I think often with HPV, my question always ends up being: ‘How likely is it that I can get through the rest of my life without this giving me cancer? And if I have got 16/18/45 because of my lack of immunity (even though they have never shown up), what does that mean for the likelihood of me going through my life without getting cancer?’

I have been so depressed in the last year and I’m now just trying to get everything together in my head so thank you for reading this xxx

Meghan Herring

Hi anna123,

Firstly, I am sorry to read about what you've been through, sending you my thoughts. 

Secondly, it sounds like you have a lot of worries about HPV so I hope I can provide some reassurance. HPV is a really common virus that most of us will have at some point in our lives, 80% of us, and for the majority of us our bodies will naturally clear it and we won't know we had it. Our HPV section on the website might be useful to read: https://www.jostrust.org.uk/about-cervical-cancer/hpv 

You also might benefit by ringing our helpline, 0808 802 8000, where one of our trained helpliners can talk you through all of your concerns in more depth. 

You might find our Ask the Expert service useful too. This is where you can put your questions to one of our medical pannelists who are best placed to answer them. https://www.jostrust.org.uk/support/ask-expert 

I hope you are able to use one of our support services so we can get the answers you are looking for to you. 

With my very best wishes,

Meghan

Support Services Officer

[email protected]

Jo's Cervical Cancer Trust

TessChay
TessChay's picture

Thanks for your true story! 
You are so brave if you can make such post!