Come gather all persistent HIgh Risk HPVers!

[Flippinghecklike]

Not a club anyone wants to join but thought it might help to have a bit of a network! I am 40, both smears since national guidelines brought in the HPV screen have come back positive for high risk and I am pretty sure I have had this since my 20s as I had abnormal smear in 2007 and same faithful (confident I promise) partner since 2005. Not prepared to shell out for the mushroom pills Ive seen others rate, but I am signing up (if they will take me!) for a clinical trial looking at treatments for women with persistent HPV. Would love to hear from anyone in the same boat!

The study I am hoping to participate in is this one: www.jostrust.org.uk/get-involved/volunteer/research

Hi Flippinghecklike,
Just seen your post about the clinical trial and wondered how you’ve been getting on and if you’ve managed to make contact with anyone yet?

Mine god know of it's persistent but I definitely see it as a curse.

Hello! I have yes - starting in August with the Liverpool team!

Ah thats great! Do you have to have had changes of the cells on your cervix to qualify. I have persistent HPV (44 years old) but have not had any changes to date /: far as I’m aware.

i think so but worth checking - I was discharged from coloposcopy as my cell changes were not even CIN1 level but there were some changes but worth calling as I know they are recruiting still

I’ve reached out to all of the research teams so fingers crossed I might get some responses!!

I’ll let you know if I get accepted! Good luck with the research and I hope it has some positive results for you!

Do! Me too…. Am less upset / worried about whole thing than I have been but do worry about it - feels a bit like an unseeable, unknowable time bomb sometimes, especially as only found out recently and clearly been there years and years

Yes I know what you mean! I’ve had some changes in my vulva area over the last month (which I’m now under a consultant for) and only realised in January that I carried the high risk HPV strain so I’ve been a bit upset about it all! I’m 44 and been married for 22 years so am also very aware that I will have had it for years! Not a nice thought. I know in reality that I just need to get my head round it all and crack on!! I’m going to ask at my follow up on Friday if I can be regularly screened for HPV related cancers and see what the consultant says.
I’ve heard back from two of the research sites but I don’t think I’m going to be eligible. Also I’m not that near the hospitals taking part so would probably be a logistical nightmare!

TBH I am commuting to Liverpool from the SE because they were the ones that accepted me - is mad but am one of those people that likes to "Do" if you know what I mean. I am really glad you're under consultant care for the changes you mention. I have lingering worries about places other than cervix too, but also suffer with anxiety generally so hard to break down what is anxiety and what is legit... Ah well - think is a great idea asking the consultant about that. FWIW my GP has said there's no screening for the other cancers but my dentist has been fab and reassured me he does a proper thorough oral cavity, tongue and throat check each time I see him - let me know what your consultant says!

Funnily enough, Liverpool is one of the centres who would like to speak to me further. I’m based in Milton Keynes though so not sure if it would be feasible. How often to you have to attend the hospital do you know?!
Im someone that likes to be proactive too, so definitely worth looking into these things. I also suffer a bit with anxiety (I guess that’s why we are both on here!) so have struggled with it all recently and driving my husband a little potty! I find that I’m looking for everything at the moment…. I’m sure this will settle down though once I get my head round it all.
My dentist is also fab and she is next on my list to speak to. My thinking is that surely they can check (even just visually) on other areas. Whilst I appreciate there is no national screening programmes for anything other than the cervix, you would have thought this might be possible. So at least, any changes can be picked up as early as possible….
Will keep you posted and likewise keep me posted your end too!

I will let you know as soon as I get the final timetable but I think is four times a year? I agree, I think it should be feasible to get a check - seeing the GP this week about anxiety meds and will ask again - at least we have each other for support !

OK great! I’ll let you know how I get on later in the week! Let’s try and enjoy the sunshine and the weekend now. It’s going to be 🥵 !!

Bit of a setback this end - found out I have HPV in anal track and something called AIN2 which is like CIN2 for cervix but anally. Only found this out because had some unrelated symptoms being looked at and asked the super helpful dr about this at the time and they agreed to do cytology. Never ever had anal sex but dr said not uncommon to spread so now being monitored for it all at homerton in e london which is good really and can see am lucky but just find this all so hard to get my head around.

Oh gosh! I’m so sorry to hear that. Will they treat that in anyway or just leave it to see how things go? Also, how will they monitor/check for any changes? I’m worried about anal cell changes too, although, like you, have never had anal sex. Weird how since I’ve found out about it all I’ve been constantly finding symptoms!!
im going to ask my consultant on Friday about regular colonoscopy checks -
I believe this can check the anus area.
However, on the extremely positive side,
they found some changes before they progressed which is brilliant and can now check you constantly and keep an eye on things!! I think that’s very reassuring and if you hadn’t have been proactive then you might never have known until much later. So well done you!

Just one other question if you don’t mind! Are you under care with the NHS - or being seen privately? They seem to be being very thorough with you which is great!

Dont mind at all! All under nhs bar the check that found the ain 2 which i paid for privately as I was worried about HPV and cell changes there as well - we dont have private medicine so self funded and wasnt cheap but the dr who did it is mainly nhs and now that they have found that it is all ubder the nhs at homerton. I think it is pretty unusual though.

Well what a great investment to have had a private test done! Not nice to know you have it but at the same time so much better than being ignorant and at least you will
now be regularly checked! I’ve read about about cell changes there and it can be the case that the cells which just return to normal so fingers crossed this will happen for you an all will be well.
Youve motivated me to push for a check in that area on Friday though! Poor consultant, I have a long list for him!!

Totally forgot to post about Liverpool - I went up, the team were fab, did all the tests and - I am not eligible. As I am no longer HPV+ in cervix, only anally (bloody hell, I am not normally a prude but really hate that word…) I cant be in the research trial. Am disappointed as the therapeutic vaccine has potential benefits for hpv in all sites so could still have been good for me but hey ho! Hope everyone else in this boat is doing ok. Waiting to hear from the hospital about the appt for my AIN2, feeling better overall about things than I have been but still wish this wasn’t on my plate.

@Flippinghecklike hello how are you getting on with AIN2? I have itching symptoms but the GP won't do anything other than treat me for yeast which hasn't worked. I've been HPV+ for over 10 years and have had CIN2. I have googled about testing for AIN and I can't find anything even privately.

I am being seen at homerton who were great at my last check - they could see it was still there and took a biopsy. The dr I saw privately was called Tamzin Cuming and she was great - she also works at homerton but the dr I saw there wasnt her, also fab though.

Thanks @Flippinghecklike I had a look at the homerton website but it said you can't self-refer did you get a private appointment via your GP?

@Flippinghecklike please can I also ask what symptoms you had that you you seeking out a private consultation?

No I called the team directly at cleveland clinic - my only symptoms were some itching but I was really motivated by knowing I have persistent HPV really.