Have any of you tried/found escharotic therapy in the UK? Or Papilocare for VAIN?

Treatment for cell changes (abnormal cells)
1

Hi everyone,

I wondered if anyone in the UK has had any experience with escharotic treatment for CIN or VAIN? I have only seen it offered in the US.

I’m a 41 year old woman with persistent high risk HPV. I had CIN3 abnormalities in 2019 which were treated with LLETZ, then was diagnosed with CC stage 1A1 which was treated with a cone biopsy, no radiotherapy etc, and I was pronounced cancer free.

However the HPV continues to hang around in my system and periodically cause abnormalities, it’s been 3 years now, despite my being a healthy weight, eating/sleeping well, not smoking, exercising etc. I’ve not been too worried about it as any abnomalities have been very mild, but suddenly I’ve been diagnosed with VAIN1 to 2 on my vaginal wall, and advised to have surgery to cut it out.

I’m taking high dose AHCC, plus other supplements like Reservatrol, Lysine, Circumin, plus eating loads of folate rich foods etc etc, and drinking gallons of green tea. I’ve recently stepped this health regime up after this new VAIN development so I cannot yet know how well it has worked.

My consultant today mentioned to me a patient she had had who was adament she didn’t want any surgical intervention and went down the ‘alternative’ route, she had escharotic treatment in the US, and it worked for her after 10+ years of HPV, or rather she was declared clear and it looked like that was the reason. She wasn’t advising me to have it, just that this was something her patient had done as her own choice.

I would like to hear of anyone’s experience of it, and where/how they obtained it in the UK, so I can make a more informed decision.

Also have heard of Papilocare which is v popular in Europe, that seems easier to get hold of so I’m interested in anyone’s thoughts or experiences with that, especially relating to VAIN, as it only seems to mention cervical lesions on the website.

Much love to all of you out there with inexplicably persistent HPV, it is a head****.

xxx

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Hello I am using papilocare like you said in Europe is used and prescribed by many doctors it has been proven to help stopping abnormalities in some cases.
No idea if is helping or not but to be honest I will do almost anything to be on the clear :sweat_smile:. I started using it in September. I had LLETZ May and 2 checks after no abnormalities but still HPV present. I am also taking AHCC and vitamins to try and get rid of the stupid virus :upside_down_face:. Never heard of escharotic treatment but I Google it and looked a bit strange is a sort of natural approach but claims to get rid of cancer on the skin, probably if that was true they will use it everywhere for skin cancer, looked dodgy to me.

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Forgot to say Lletz was for CIN3 and CGIN.

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Thanks for reply :slight_smile: I know what you mean about the escahrotic therapy, I feel like when I read about it online then reviews/results are either absolutely glowing or the other end of the spectrum and there is major scepticism, mainly there just seems to be a lack of info. It seems to be offered by naturopaths and the main American doctor offering it is a chiropractor! Which I find bizarre.

I think I will try Papilocare first and give the AHCC and other regimes a chance to work first.

I wasn’t too worried initially when the HPV didn’t disappear after my procedures but as it’s been 3 years I’m just finding it increasingly stressful to have it hanging around, causing abnormalities that are treated as and when they show up, but never getting to the root casue, the virus.

Would love to know how you get on with the Papilocare.

And if anyone else does have anything to add re escharotic therapy I’d still like to hear. It’s hard to hear there’s something out there that ‘might’ help, always makes you feel like you should be doing it just in case…

Best wishes to you Hop1 and everyone xxx

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Good luck :+1:t3: hopefully we will get rid of the virus eventually but making sure things don’t get worse by attending doctors appointments is the main thing I am really hoping for an antiviral treatment soon but until then papilocare and AHCC are the home treatment we can do. Also not sure if you got the HPV vaccine but definitely worth it as it will help with other HPV types and some studies suggest helps inmune system fight the virus.

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Agreed on attending all the appointments and doing what we can eg AHCC, papilocare, supplements etc. I’ve had the vaccine, 3 injections starting end of 2019 and into 2020, so it’s had more than a year to work for me and no joy yet. And in a long term relationship so not so much chance of coming into contact with other strains. Think that’s why I’m now so fed up and stressed about it and a bit desperately looking for new solutions, it’s just so persistent with me! But I am looking after myself these days to a level never seen before, so hopefully eventually my body will clear it! I hope the same for you, soon xx

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Totally get you I am constantly reading medical articles to see if there is any news on a new treatment or magic pill to make HPV disappear, not a doctor so half of what I am reading makes absolutely no sense :rofl::rofl::rofl::rofl: take care and I believe the statistics are in our favour women that go for checks after treatment manage to keep the cancer away maybe with some intrusive and annoying treatments but it keeps it away.

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I am considering trying papilocare to give my body the best chance of clearing HPV.
I am not sure when I should start using it though, I am due to have LLETZ for CIN3 soon- should I wait until I am healed?

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Papilocare seems to be a cream, and therefore I would ask your health care team how soon you can start using it after LLETZ - it’s important not to encourage any infection. I suspect you’re looking at 4 weeks, but I’m not qualified to say. X

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Hi everyone,

I’ve come back on here to share a positive development - i’m conscious that it’s easy to post a lot when things are going badly and then when they improve, not to update, which means people searching for info see only worrying posts!

I have gone from VAIN1 to 2 in December and looking at a very likely excision surgery (as explained in my original post above), to seeing it shrink back and go to a very small amount of VAIN1 only, and back to ‘watch and wait’ for now - no surgery.

My VAIN was treated in Dec ‘in the chair’ with silver nitrate, and also a biopsy was taken that my consultant thinks removed about 25% of the affected area, and these two actions will certainly have made a difference.

But I have also been taking a range of specific, researched supplements in concentrated doses and making specific lifestyle choices inconjunction and I am hopeful that these too have made a difference. I thought I would post the info here in case it is useful. I wasn’t expecting to have seen such a reduction in my VAIN so quickly (7 weeks) and was really in the depths of researching and expecting further treatments (Papilocare, escharotic treatment etc) but right now this approach seems to be making a difference. It’s expensive for sure and I’m aiming to do it for 6 months and then potentially scale it back a little if things have improved enough - my ultimate goal of course is a negative test for any HPV and have it be dormant.

My regime, as researched on forums and scientific journals

  • AHCC mushroom extract supplement (Kinoko Platinum) 3g per day on an empty stomach, as soon as I wake up, wait 1 hour before consuming any breakfast etc. This is the big one, the one that there is the most research on. And the most expensive.
  • DIM - 200mg per day
  • Methyl B12 & Methyl Folate (combined) 800mg per day
  • Reservatrol 500mg per day
  • a good multivitamin (all supplements other than the AHCC taken with food)
  • 3 strongly brewed cups of green tea per day minimum
  • 2g fresh turmeric per day (usually in a smoothie)
  • using condoms - reduce any viral load in case my partner has hpv
  • came off the pill after many years - this is a personal choice as there’s no definitive evidence that it makes the difference but there are studies that it can reduce immune system effectiveness
  • very healthy, unprocessed diet, lots of fruit/veg/nuts/grains/seeds etc, little sugar
  • making sure to get enough sleep and daily exercise
  • not drinking other than very small occasional glass of wine (for my sanity/to feel normal!)

Obviously generally healthy lifestyle choices are something a lot of us do anyway (incl. me) and don’t see any relief from hpv but I do feel/hope that taking them very seriously for a while in conjunction with the supplements (and thankfully good care from my docs) has made a difference. Time will tell though how much of it was down to doctor treatment and how much was the additional actions. I am hoping that things will continue in the same direction, I’ll know in May.

If not and new abnormalities crop us then I may still be pursuing Papilocare or naturopathic treatments in the future and if I do I’ll come back here to post.

Happy to discuss any of this, it is all self researched, not doctor prescribed, not 100% proven and I am not an expert, but I have seen these supplements and doses in many places/articles online. My NHS consutlant mentioned the AHCC and green tea to me (you can also take green tea as supplements). I would advise anyone to do their own reading around taking any of them. As I say happy to discuss and happy to be corrected if needs be.

Very best wishes and good health to all of us xxx

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11

Hi newby,

here i just wanted to say thanks so much for your post about alternative approaches.
I have been told I have CIN 3 and they want to chop bits out ect but it just feels wrong,ive been under alot of stress lately so it makes sense that my body is showing this by the cell changes as ive read about how most woman with high grade cell change have a trauma or highly stessfull situation happen .

Im fit and healthy and do not use pharmaceuticals at all so really don’t want the leap procedure at all.
I will look into what you’ve recommended for sure .

I have also found a womans clinic in london that does the Escharotic treatment so I may investigate further.

How are you now after all the supplements?

Thanks Cathy

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Hello. I Know how scary it is to have CIN3 results and the thought of having a Lletz I been there. But please do have it done CIN3 is the highest level of abnormal cells and the chances of this reverting to normal are not great. I am also fit and healthy so that doesn’t mean that healthy people don’t get this. Do not risk this becoming cancer is a much more complicated treatment then as probably many of the women on this site can explain better than me. I had LLETZ is not fun but absolutely fine after recovering. Take care and hope all works out well for you

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I appreciate your reply but having looked at lots of pubmed studies and papers leeps are overused and not always necessary.
Also CIN 3 can take up to 15 years to turn to cancer and just because you have CIN 3 does not actually mean it will turn cancerous .
Ive found so many accounts of woman having horrible leep problems and equally you can find negative information about escharotics, its a mine field and I hate it .

It just upsets me that in this day and age woman are still not being told the truth about their choices surrouhding their bodies. And I dont like being scared into having treatments without knowing the full facts of how they can affect you .
Hopefully I will talk to the clinic I found in london and see what they say.

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I totally disagree, CIN 3 needs treatment it doesn’t always take 15 years for CIN3 to turn to cancer, if you read lots of women’s experience in this forum and also studies on follow ups from women for years you will see it can be a lot less than 15 years
. To take the risk of cancer for me is just too high. Women have choices, I have been reading for over 3 years about this from my first day I was diagnosed with CIN and is not about being scared or not is about making a scientific decision. And all the alternative treatments do not have a good success rate. Also the big majority of women have no issues with LLETZ and that’s is a fact.

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Great post @Hop1. I completely agree with your points and have known many women throughout my own time with cancer who had a cancer diagnosis in way less than 15 years. It’s a really dangerous assumption to suppose you have years before things change. And in some cases not early stage cancer where surgery was possible, but locally advanced and advanced cancer. I would love to have been diagnosed with CIN3 and had a LLETZ rather than go through everything I’ve been through in the last few years.

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Thanks Lilypingu .I really hope people understand that cancer is no joke and to assume CIN3 will just ho away is very worrying. Hopefully we were able to help someone with this post :heart:

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I’ve encountered women who’ve refused treatment and tried alternative routes for various reasons-not wanting “invasive treatment” and wanting to protect fertility etc because they believed a LLETZ was not the way to go, or even after an actual cancer diagnosis refusing potential life saving treatments in favour of drinking tea and using herbs etc.

None of them are still alive. That’s how scary this all is. I would never have gambled with my health when I went straight to a cancer diagnosis. I trusted my doctors, I trusted the science. And 5 and a half years later I’m still here, though I have been through treatment and brutal life changing surgery.

It’s very hard to change the minds of women who have not experienced cancer-they are swayed by horror stories about conventional treatment, often made by charlatans who are making a lot of money from frightened women. I have learned not to try nowadays, because I’ve found in the past these women who want to choose an “alternative” route don’t listen to anything else. They choose to gamble, but it’s their choice.

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100 % agree :+1:t3:. That doesn’t mean that once you have done Lletz you can use Papilocare or AHCC Vitamins or similar to try and get an HPV negative result but to say not doing Lletz with a CIN3 is simply so dangerous that I couldn’t keep quiet after reading this post. Hope you are okay now Lilypingu

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I’m doing ok thanks. Of course a clinic doing alternative treatments is going to try and persuade ladies to do it, but if I’d had CIN3 and not cancer I would have wanted a single LLETZ procedure to hopefully get rid of the abnormal cells there are then rather than multiple treatments of a caustic substance put on my cervix at significant cost to me.

Cancer is hard…especially cervical if the CIN3 develops into this. Some people assume they could just have a hysterectomy and that’s it-hpv gone forever and all very simple. It’s absolutely not the case at all. And an hpv negative result doesn’t mean hpv is “cured”. It isn’t. But each to their own!

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