Questions about CIN 3 and HPV in a lesbian woman

Dear all,

Firstly I just want to say thank you to those who run this website - it is fantastic and very supportive

A lot of my questions relate to smears in the context of same sex relationships, a topic which I am struggling to find much info on online.

I got invited to my first smear recently (aged 25), ended up having it about 5 months after my birthday (silly to delay it but have quite an intense job and move around a lot), a couple of weeks ago.

I expected it to be clear. Firstly, I had the HPV vaccine (although admittedly was possibly exposed to HPV at a young age for reasons out of my control, which is not something I feel comfortable discussing). Secondly, I have been in a relationship for 7 years (Same sex partner). We did have a break 4.5 years ago, when I did have one other sexual partner (also same sex) for a period of 6 months, but myself and my partner have been completely monogomous for about 4 years.

I got a call last week to say i had severe dyskorysosis and HPV. This was a shock to me. The hopsital asked if I could come in 2 days later. The colposcopy was uncomfortable but fine. Some biopsies were taken but the consultant assured me that he is fairly confident it is CIN 3 rather than CC. Still I have to wait for biopsies. He has booked me in for a lletz end of feb as I am going on holiday next week, for 2 weeks, and he was not happy for me to have it before going away.

I had some questions really and was wondering if anyone could help me.

I am of course worried that I have cancer. I know it is impossible to tell without the biopsy. I am concerned because I have lost about a stone of weight in the last few months (although I have been under tremendous pressure in many aspects of my life and have struggled a lot with anxiety and therefore have lost my appetite). I do feel the doctor would have told me if he was worried. But at the same time you can never be sure and I keep thinking what if. I have no other symptoms.

To be honest, what I am very upset about is the fact that my partner also tested positive for HPV on her smear last year. I am concerned that I may have given her it as I may have contracted it when we broke up. She was not sexual active with anyone else during this period. Her smear was normal other than the HPV and she was asked to attend in 12 months which is coming up soon. However, I cannot help but feel horrendously guilty. What if she struggles to clear the virus, as I clearly have to, and then has to go through this because of me? I cannot live with myself if she has to go through all of this because of me.

I was wondering what the chances are that we will both clear this virus, considering i have probably had it for years now (and she too). I have read of people clearing it after their LLETZ. If my partner has cleared it, how do I protect her from getting it again? Is it actually easy to pass on during lesbian sex? Everything on the internet is contradictory. Or would the only way to be sure to abstain for a while whilst we both clear the virus?

Thank you in advance,

DP xx

 Hi

I don't have experience of same sex relationships but, as no one has replied yet thought I'd share some thoughts.

Firstly, about your weight loss; it seems to be explained by your loss of appetite due to anxiety.  So, maybe it's reasonable to set that worry aside for now.

 I thought I would highlight the positive aspects of knowing you have high risk HPV (HR-HPV). I think that the recently introduced primary HPV screening is a promising way forward and it's thought it should result in a significant reduction of cases of cervical cancer in the coming years (see following link)

 https://scienceblog.cancerresearchuk.org/2019/01/24/preventing-cervical-cancer-how-a-screening-switch-and-hpv-vaccination-should-cut-cancer-rates/

 It seems the down side of people knowing that they are HR-HPV positive is the anxiety and guilt it often seems to cause. You could spend much time and energy beating yourself up about how, when, why and what if, but that won't really help anything. It's a good thing that you and your partner, are informed; contrast my situation where I had no obvious reason to think I was at risk, so decided it was OK for me to stop going for a smear tests - see my back story.

 Whether or not you and/or your partner clear the virus is largely down to your immune systems. About 90% of HPV infections clear naturally within 2 years:

 https://www.jostrust.org.uk/information/hpv/hpv-cervical-cancer

 Any form of genital contact, penetrative, skin on skin and sharing sex toys, presents a risk for passing on HPV. I don't know if there are any studies comparing the risks of diffent types of sexual contact - can't quite imagine how one could conduct such a study so as to get meaningful results. I'm not sure what to say about your question whether to abstain from sexual activity until you both, hopefully, test negative for the virus; maybe your medical team can advise you about that - or maybe Jo's 'Ask The Expert' service. But for sure, always follow medical advice about cervical screening/treatments because evidence indicates it's the best way to prevent cervical cancer. Beyond that, supporting the immune system by not smoking (if applicable), healthy diet etc increases the chances of clearing the virus.

 x

Hello 

In some ways, because you will both be tested you have an advantage over heterosexual couples where only the woman is tested for hpv & has no way of knowing if her partner has it/still has it. From what I understand a lot of it depends on how good your immune system is (although I am not medically qualified). I personally think they should routinely  test men as there is a rise in head & neck cancers in men & they are tested for hpv if they develop this. Maybe dentists should test us all & then it might cause less worry for couples or at least be fairer in terms of sex equality & protecting us all from the risk. One good thing that has come out of this for me is that it has opened up the conversation with my daughter who it turned out (at 27) had never had a pap test due to anxiety. She is in a same sex relationship & I as a mother through this experience became aware that same sex couples also need to be tested. She is of the generation who had the vaccine & fortunately her pap test came back all clear & she felt a lot better when she had overcome her anxiety.

I hope it all works out well for you.

 

Hello again I also had an interesting discussion on the MacMillan forum about head and neck cancer. There were some women over 65 on there who had husbands with head & neck cancer & who wanted to request a pap test over 65 for themselves because of anxiety over hpv. When I asked whether they felt that men should also be tested they were very much in agreement as earlier detection may have saved their husbands' suffering. I wonder if there would be a public outcry if there was mass testing for hpv? There certainly seems to be a lot of misinformation & guilt & stigma out there! I have not had a partner for many years since splitting up with my daughter's Dad & feel very wary of any contact with anyone now that my hpv has cleared; I certainly don't want it back!! Having said that I'm pretty sure that after the year from hell stress wise last year my immune system was weakened through stress. I have also lost weight & am checking with the gp tomorrow for the second time. 

 Hello 

I don't know if you are aware but 4 in 5 people are exposed to hpv in their lifetime & so that's why it's important to get screened even if you have had the vaccine as it only protects against some strains. Even Doctors don't fully understand it & it can lie dormant for many years (as in my case). There is no way of tracing it back & your partner could easily have caught it before she met you. It is difficult & a shock when you are first diagnosed & I myself have gone through a lot of anxiety as I never considered myself to be at risk. I have had counselling & phoned helplines when feeling at my lowest point so I understand your anxiety - the hardest times are waiting for results & dealing with uncertainty. However you & your partner could be a great support to each other. Inform yourself as much as possible about the facts & look after your immune systems but try not to blame yourself.