Yeah, it’s pretty expensive if not covered ($600CAD for a 3 doses). I had a prescription so my extended insurance covered it.
I just looked up NHS coverage of vaccine: impressive! In Ontario it is currently only free for all teens and men under 26.
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Hi,
I’ve had VAIN 3 and HPV that was extremely difficult to clear, but I have now done so. I hope some of my experience is of use. I appreciate you don’t mention HPV that won’t clear but some of the responders do so I am adding this as it may be of use to them.
I had CIN2/3 treated succesfully some 20 years before being diagnosed with VAIN3. The VAIN 3 lesions were quite extensive and after several laser treatments, partial excisions were still there so in 2011 I had an abdominal hysterectomy and colpectomy (kept ovaries). I expected that to be the end but by vault smears were still showing VAIN1/2 and I had HPV still (after 5 years). I am a non smoker, normal weight, eat very healthily so couldn’t understand why. I had further treatment with silver nitrate, further excision and laser treatment. I was then showing VAIN on biopsy and still HPV. By then it was 2014 I had further laser for the VAIN and my consultant told me to get the HPV vaccination as emerging evidence showed it could help, my GP prescribed it and I got the three doses. I also tried imiquimod on tampons for a six week period and then had some bleeding so stopped. At that same time my consultant told me that there was emerging early evidence around shitake mushroom extract (AHCC) being used to eradicate HPV so I started on that. I still take that today. In 2015 I went back for my six month check and smear and HPV were normal. I have had yearly vault smears since then and fingers cross to this year they have all been clear of HPV. I can understand how worrying this diagnosis is and HPV that just won’t go is so frustrating but I hope my experience shows that it it can be done. I’m not sure which of the treatments got rid of the HPV but anyone on here is struggling with high risk HPV that won’t clear then then I would suggest the HPV vaccination and the AHCC. (I buy my AHCC from USA as it is so much cheaper, still expensive but worth it). I would also make sure you have a good specialist consultant (I was treated in a general hospital for a few years under a general gynaecologist before I got referred to a gynaeoncology team). I had a fantastic female consultant in the NHS in London. It doesn’t help that most people, even GPs haven’t heard of VAIN and it’s quite a difficult one to talk about as not many of us have this horrible diagnosis. Hope this is of some help that things can get better. Please let me know if you have any questions.
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Hello,
That’s fantastic news to hear. It must be a relief!
Yes I still have the virus as far as I’m aware.
Thanks for the detailed reply too. I’ve read about the mushroom thing before so I’ll certainly look into it again as I’ve got nothing to lose.
The team treating me on the NHS are excellent and I’ve been told one of the best in the UK, so I feel I’m in good hands. I haven’t had to apply the imiquimod myself as they have arranged for me to go in twice a week which is a relief.
I feel like it’s just a case of bad luck.
But I’ve got this far so I might be lucky this time round!
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Hi Fli67,
How interesting your experience with HPV and AHCC (and the vaccine of course). As you say, there is no harm in trying. I think I have been HPV positive for probably 30 years or more, looking back at my history - but was only tested for it in 2020 when I found out I had cancer Stage 3. I too am normal weight, non-smoker, healthy eater etc. but I’ve started taking AHCC since my cancer treatment finished (chemo-rads) and will continue to do so, along with other supplements. As I see it, can’t do me any harm. I’m far too old to be having vaccines for HPV (64). Hope you remain clear for VAIN. X
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Hey Jacks133
Can I ask what brand you’re using?
Some are super expensive so I’m trying to work out what the difference might be as it’s a serious investment!
I am currently using: VITABLOSSOM SHIELD Active Hexose Correlated Compound Supplements, Enhanced Immune Support, Beta Glucan & Fucoidan & Vitamin D3, Liver Function, Maintains Natural Killer Cell Activity, 500mg Per Serving - on Amazon.
https://smile.amazon.co.uk/Correlated-Compound-Supplements-Enhanced-Maintains/dp/B08QTMVXGX/ref=sr_1_2?crid=2GOUAMHR8TOXO&keywords=vitablossom%2BAHCC&qid=1643970980&s=drugstore&smid=A3MCQM9UE3I0CP&sprefix=vitablossom%2Bahcc%2Cdrugstore%2C39&sr=1-2&th=1
You will see they have good reviews (I always read reviews) where other people have used it for HPV, and you can buy in various different pack quantities. Some of the overseas labels are ridiculously over priced. This includes D3 which helps to process the compound. X
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I am 56, lied about my age and had it in boots
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Good for you girl, especially that you could get away with it 
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Hi Kontikitoo
Sorry to hear about your situation but I don’t feel so alone now. I’m 76 and have had hrHPV for about 15 years. Altered cells have come and gone but never cleared, in the cervical smears, so they did a total hysterectomy. VAIN area seems to be spreading so they want to do multiple biopsies under GA to check for VAIN 3 (it’s been VAIN 1 so far). I agree that the language used is not helpful. I hate the term “vault” for a smear after a hysterectomy.
Good luck with your imiquimod treatment. That is the next step for me if things progress. Take care x
Face masks helped 
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Sorry to hear you’re going through it too.
I’m in my last week of treatment next week so fingers crossed. No real side effects or pain so far and I’m hoping it at least clears it for another year.
Keep us posted on how it goes x
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It’s a shame you even had to lie. It seems like a crazy restriction when you’re the one paying!
I’m hoping to get a recommendation to my GP…it’s pretty expensive otherwise.
Failing that I’ll hope they don’t spot my grey hairs when I knock off a few years!
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Tbh no one asked
I’m not sure if it was worth it or not, but I don’t think my GP would have recommended it, they didn’t seem very wised up
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Hi I’m completely new to forums like this but Ive recently been diagnosed with cin2 , vain3 and the hpv virus. I’ve had the cin2 removed and I’m waiting to hear from the hospital about which treatment I will have for vain3 they said in the area I live they don’t do laser treatment and they will probably look at doing a full hysterectomy. I’m also waiting for an ultrasound scan of my womb and ovaries. I’m 44 I previously had cin2 in 2005 but had normal smears until this year.
I’m devastated and feel unable to talk to anyone about it. I’m embarrassed and I feel like people will think I’m dirty. Im married and my husband has been very supportive but I just feel like I’m alone. I’m slim, never smoked, exercise and eat healthily so don’t understand why I have this. I think because it’s my vagina I can’t talk openly with anyone and I don’t know which treatment I should be asking for and if I should ask for the hpv vaccine.
This is the only post I have found about vain.
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Hi An1 and welcome
As mentioned above by 551 it’s worth looking at the Eve Appeal website as it covers all 5 gynae cell abnormalities/cancer, including VAIN. The Eve Appeal also have a nurse led help line if you would like to talk to someone about VAIN etc.
https://eveappeal.org.uk/
x
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Thanks Jazza for your response I’ll look at that.
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Hi An1,
Sorry to hear you’re going through this too. I found out I had VAIN a few years ago after various treatments for CIN3, including a hysterectomy when I was 40 (I’m now 47). So I understand how gutted you must be feeling. I’ve tried to keep these threads going as I couldn’t find much info either.
I’ve had laser treatment - less effective for me; imiquimod cream (a type of cream usually used for skin cancer) - some success in reducing the size of the lesion on my vaginal wall but I’m now looking at another type of treatment commonly used for HIV. I can’t think what it’s called now but from what I understand it’s anti-viral and not particularly pleasant.
I’ll try and post an update when I know more as my next appointment is in June.
I’m happy to share my experience if it helps.
K x
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Finally got my biopsy results this week. There was months of delay over whether my heart was up to having GA before they finally took me in. The good news is that nothing higher than VAIN1 was found so I can relax for another 6 months. I’ll ask about the vaccine but not hopeful at my age (77 in October). Wishing you all a smooth ride on this scary journey xx
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Hi HoJo,
That’s good news and hopefully it stays that way.
It’s can sometimes feel like an endless cycle of 6 monthly check ups!
I still haven’t got anywhere with the HPV vaccine - but they tell me they are working on it! If I felt certain it would make a significant difference I’d pay for it myself - but it’s a big cost so I’m waiting to see what my June appointment brings.
I also need to find out more about the next treatment…no matter how many appointments I’ve had, I still freeze and fail to ask the questions I should…I’m sure it’s a self preservation method as asking questions leafs to answers I might not want to hear.
Fingers crossed for us all x
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I hope you have good news about the vaccine in June. I know what you mean about forgetting to ask the right questions. We’re all the same 
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