HPV negative finally! After 8+ years - Here's what worked for me!

Hello ladies!

I, like many others I have come to learn, had persistent HPV for over 10 years (8 years confirmed via screening) and I am hoping what I’m about to type can be helpful to others riding the same wave.

Here’s my history:
2015 first smear test - the cervical screening programme was piloting HPV primary testing in my area. Results: HPV positive no abnormailities 12 month recall.

2016 - My results letter had no mention of HPV so this wasn’t tested! Results: normal cytology back in 3 years.

2018 - I had severe anxiety as I had just found out a friend of mine had been testing positive and was offered screening every 12 months, I kicked up a fuss with my GP and requested they take another smear, luckily it wasn’t rejected by the lab, Results: HPV+ no abnormalities back to routine recall?!

2021 - Results: HPV+ no abnormalities 12 month recall. At this point I was so unhappy with the lack of follow up since my first invite, compared to others. I raised my concerns with my GP (who was pretty clueless) after reading that after 3 HPV+ results you should be invited to colposcopy. At so at this point I mentioned on a couple of occasions I had some brownish spotting mid-cycle (I may have over played this and realise it was highly likely to be ovulation related) so I felt I had no other choice but to play on this to get seen by a specialist. With my history, my GP requested a referral to colposcopy which was rejected by the hospital, and then attempted to refer me to the gynecology clinic which was also rejected!

I felt I had no other choice but to go private - the anxiety of having had this for so long (reading “most” people clear hpv within 1-2 years really isn’t helpful!) was consuming way too much of my mental capacity and I didn’t buy that the HPV went away inbetween screenings and coincidentally “came back” just in time for my next smear (as my GP suggested). I tried everything to boost my immune system, AHCC back in 2015 and again 2018 for 6 months both times (when it was afforable!), in 2021, all types of vitamins from high dose vit c, folate, b12, gut boosting vits, vit E, tumeric, beta glucans, and the rest…drank green tea, ate healthy, exercised - I threw everything I could to boost my immune system to fight this thing and nothing worked. In the end I found a consultant who actually could treat the HPV infection on Harley Street in London using Trichloroacetic acid (TCA) with pretty high success rates (75% clearance) providing it is just that or at most CIN1, I went for the consultation where a colposcopy was carried out, as well as a HPV panel and cervical cytology - this came back as HPV+ve type 18 with normal cytology and that I would be a good canidate for the TCA treatment. I had the treatment a month later, he called me back for another colposcopy, HPV/cytology screen 4 months later which all came back negative which was back in Oct 2021. I thought I’d wait for my NHS recall before I posted just to triple check and I recieved those results this weekend which are also negative for HPV!

I realise that not everyone is in a fortunate position to be able to afford private follow ups and to be honest, I wasn’t sure whether it would be helpful to post my story and a treatment that not everyone will have access to, but I couldn’t not post the success of this treatment in the hope it helps someone in the future.

xx

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Very interesting thanks for the information
Had LLETZ treatment for CIN3 .I have no abnormalities now but still HPV positive and totally desperate for treatments to be able to clear the stupid virus taking AHCC and all sorts of vitamins, I will definitely look into this .

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Thank you so much for posting I had never heard of this and amazing they offer in London. I found this research article about it: https://pubmed.ncbi.nlm.nih.gov/26942365/

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Thanks for sharing! honestly it baffles me as to why this isn’t something that is offered on the NHS, so cheap and clearly quite effective too! Hoping one day very soon this gets some air time and is a first line treatment for HPV & CIN :crossed_fingers::crossed_fingers:

Congratulations - what excellent news! Are you able to give me an idea of the cost of this treatment and also where you had it done? [quote=“Darwin, post:1, topic:52671, full:true”]
Hello ladies!

I, like many others I have come to learn, had persistent HPV for over 10 years (8 years confirmed via screening) and I am hoping what I’m about to type can be helpful to others riding the same wave.

Here’s my history:
2015 first smear test - the cervical screening programme was piloting HPV primary testing in my area. Results: HPV positive no abnormailities 12 month recall.

2016 - My results letter had no mention of HPV so this wasn’t tested! Results: normal cytology back in 3 years.

2018 - I had severe anxiety as I had just found out a friend of mine had been testing positive and was offered screening every 12 months, I kicked up a fuss with my GP and requested they take another smear, luckily it wasn’t rejected by the lab, Results: HPV+ no abnormalities back to routine recall?!

2021 - Results: HPV+ no abnormalities 12 month recall. At this point I was so unhappy with the lack of follow up since my first invite, compared to others. I raised my concerns with my GP (who was pretty clueless) after reading that after 3 HPV+ results you should be invited to colposcopy. At so at this point I mentioned on a couple of occasions I had some brownish spotting mid-cycle (I may have over played this and realise it was highly likely to be ovulation related) so I felt I had no other choice but to play on this to get seen by a specialist. With my history, my GP requested a referral to colposcopy which was rejected by the hospital, and then attempted to refer me to the gynecology clinic which was also rejected!

I felt I had no other choice but to go private - the anxiety of having had this for so long (reading “most” people clear hpv within 1-2 years really isn’t helpful!) was consuming way too much of my mental capacity and I didn’t buy that the HPV went away inbetween screenings and coincidentally “came back” just in time for my next smear (as my GP suggested). I tried everything to boost my immune system, AHCC back in 2015 and again 2018 for 6 months both times (when it was afforable!), in 2021, all types of vitamins from high dose vit c, folate, b12, gut boosting vits, vit E, tumeric, beta glucans, and the rest…drank green tea, ate healthy, exercised - I threw everything I could to boost my immune system to fight this thing and nothing worked. In the end I found a consultant who actually could treat the HPV infection on Harley Street in London using Trichloroacetic acid (TCA) with pretty high success rates (75% clearance) providing it is just that or at most CIN1, I went for the consultation where a colposcopy was carried out, as well as a HPV panel and cervical cytology - this came back as HPV+ve type 18 with normal cytology and that I would be a good canidate for the TCA treatment. I had the treatment a month later, he called me back for another colposcopy, HPV/cytology screen 4 months later which all came back negative which was back in Oct 2021. I thought I’d wait for my NHS recall before I posted just to triple check and I recieved those results this weekend which are also negative for HPV!

I realise that not everyone is in a fortunate position to be able to afford private follow ups and to be honest, I wasn’t sure whether it would be helpful to post my story and a treatment that not everyone will have access to, but I couldn’t not post the success of this treatment in the hope it helps someone in the future.

xx
[/quote]

If you type in google “TCA treatment to the cervix” this should come up along with many articles on trials for this treatment and so forth.
The treatment is expensive, there is no sugar coating that, but is made more so due to the initial need for colposcopy beforehand and to see whether the TCA has successfully eliminated the virus after, along with the HPV/cytology testing. TCA itself was £595 and colposcopy package (includes cytology & HPV panel) was £655. Obviously it is up to you to have the follow up colposcopy after the treatment (you could wait for your NHS screening) but I am not sure whether the consultant would proceed to offer TCA without carrying out one himself beforehand so at minimum you are looking at £1250 :face_with_peeking_eye:

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Thank you. I find this to be very resourceful

I’m was so shocked by my results HPV positive normal cells ( unaware that this was now checked). Haven’t felt comfortable to have a sexual relationship with my boyfriend for nearly a year.
Have been private for another 6 months after and due another nhs soon.
I’m 61 feel great but I’ve closed down sexually

Thank you

Thank you for taking the time to write up your experience. I have had my forst colposcopy today for borderline abnormal cells. A biopsy was taken to check for CIN 1. I am 53 so this has been a bit unexpected. I would like to know nore about TCA treatment for cerical HPV and would appreciate a DM with your specialists details and cost of treatment. I will get my results in 4-6 weeks but would prefer to get rid of the HPV before it does any damage if thats possible.

@Darwin thank you for sharing your experience.
Are you aware of any long term side affective?
Do you think this treatment could affect fertility in the future?

Many Thanks

Not that I was told or that I’m aware of. The only side affect I would say is some mild discomfort for a minute or two when it’s being applied but other than that I had a really good experience.

IMO I don’t see that it would affect fertility as TCA damages the area where it’s applied, down through the basal layer and slightly into the dermis (which may be why they will only treat upto a CIN 1 as the cells haven’t gone so deep) this then peels off the infected area removing the virus and that skin regenerates and returns to healthy skin. Look at dermatology for instance, they use TCA for chemical skin peels on the face, as an acne scarring treatment as well as for HPV warts and it probably has many other uses. I think, providing you have treatment carried out by a professional there should not be any risk of scarring (which I’m assuming is what you are concerned about?) Or any long term side effects.

I hope that helps x

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Hi Darwin
I know it’s been some time since you posted about your TCA treatment. I hope all is well with you!
I just had some questions about the treatment and the costs please?
Did you need a biopsy first or just a colposcopy package? I notice you say they will only do it on CIN 1 but the trials seem to suggest it is suitable for CIN 2 as well. It doesn’t say on the website either way! Just curious to know more about your experience in general but too nervous to ask the Centre who provides the treatment!

Hey, so I didn’t need any biopsy as when I had the colposcopy he could only see a small area that may have been borderline changes but the cytology came back with just the HPV. I imagine if on inspection he saw more then I would have needed a biopsy to be certain. The cost back then was £595 for the treatment and £655 for the colposcopy package (this needed to be done twice once before to see if I was a good candidate for the tca and then about 4 months after treatment to see whether it had been successful) which included cytology and HPV screen, but of course everything has gone up in price now so I would check their treatment price list to be sure. It’s a lot of money but I was desperate and luckily it worked out for me. It apparently has a 75% success rate so I really had nothing to lose.

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Hi! Thank you so much for your quick reply!
Did they say you had to have the follow up appointment at their clinic? I notice in your first post you said you didn’t think you did but just checking :slight_smile:
I live very far from London and not sure my funds could stretch to two colpos and the treatment and do the travelling too!

Hi Everyone.
I am so glad you have been able to support each other and hope you have found the Forum useful. Just to let you know that I have edited a few of the posts - just to remove any identifying names of the doctors and clinics that occurred in some of these posts. Unfortunately the moderators missed the original post in which these were identified - naming health care professionals and hospitals/clinics is against our community guidelines which you can find at https://forum.jostrust.org.uk/tos. We do this to protect the privacy of our forum users and the HCPs/hospitals as these are public posts and anyone can search for them.
Please do let me know if you have any questions.
Kind Regards
Paula
Support Services Team

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Well ultimately it’s up to you, they can’t force you to have any follow up but recommend it.

If say you had a nhs recall 4-6 months after you have the TCA (or within 12 months depends how long you are willing to wait to see if the treatment worked) then I guess you could wait for that if you couldn’t afford the follow up privately?

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Thanks for your reply! Can understand why they request it I suppose it all depends on timing etc

Also thank you mods for being understanding, I didn’t realise about not naming names, apologies