Long term cure after lletz for cin 1 /2

[red_onion94]

Hello everyone,

I have HPV the last 4 years and more specifically HPV 16 the last one. Keep getting cin 1 in my punch biopsies and we have not done any lletz yet. My question is: has anyone been treated with loop/ lletz and they did not have abnormal cells coming back for years or decades? Meaning they were actually cured completely. Because if every 2 to 5 years we need to do a new lletz, then one day a hysterectomy will be unavoidable and I really do not want to go into a cancer stage. Plus I am still 29 and without kids. I cannot find anywhere the long term cure of this lletz method. Thank you for your help!

[KatieT]

Hello. As far as I know there is no complete cure as such. The thinking is that at some point hpv may be suppressed sufficiently for you to test negative. It could potentially “flare” up again decades later even, which is why it’s important to keep going for screening. However, my gynecologist said they often see that LLETZ does suppress the virus and many people, in his experience, do test negative after it. Hope this helps. X

[red_onion94]

Hi Katie,

Thank you so much for your quick response and you took the time to respond to my worry! So as I understand, if the virus goes dormant and the abnormal cells have been removed, it is unlikely they come back until/if the virus flares up again. It makes some sense. I was reading that 3.9% of general population gets HPV 16 (accounts for 160.000.000 women ) and 600.000 get cancer per year worldwide. And from those 600.000, 55% is attributed to HPV 16. So, I understand 90% of those who get HPV 16, they clear it sometime if their immune system allows to. If this is the case, there is hope, because I thought it is a death sentence for me. Thanks a lot again for your time and response! Fingers crossed we all test negative for a long time

[KatieT]

Hey lovely. I know exactly how you feel but many many people do successfully suppress it, even after having it for years. And sometimes it never flares back up. As long as you keep going to appointments you’ll have the knowledge you need to deal with it. I know it’s easier said than done but just take each step at a time because worrying about the long term just stokes anxiety (and I say this from experience!) Sending you loads and loads of good vibes x

[red_onion94]

Thank you so so much you are lovely and really supportive! All the best to both of us

[KatieT]

And the same to you! It feels so lonely at first doesn’t it? As if you’re on a parallel path to everyone and it’s hard because there seems to be so much uncertainty and waiting with it all. But knowing that there are other lovely, positive people (much as we wish none of us were in this situation) supporting each other makes it feel that bit more bearable. Keep going X

[red_onion94]

Yes it feels like that! It is very uncertain… But we can make it or at least try. Now I have a month that I have spotted some pink discharge days after period when I wipe and I read some stories where in rare cases it can be advanced CC with pink discharge as a symptom and I can be in the endocervix where it is undetectable via colposcopy. This is the rarest but I really don’t understand why I have that. I got yeast infection last month from antibiotics. I got the blue pill and the balance activ BV treatment and the problem started. Back in my country the doctor also prescribed lomexin for fungal infections. After my period which ended 2 days ago I have this pink discharge again which is not part of my normal end of my period. Honestly, this thing drives me insane… Have you ever had that symptom before?

[KatieT]

I am SO sorry, have only just seen this message. I hope you got some clarity on the situation and your mind is at ease xx

[Juli]

Hi @red_onion94 myself I have had high risk HPV for 4 years and have been found CIN I as well, so was offered LLETZ. I’m sorry I cannot help with your doubt as I haven’t experienced myself but just wondering… how do you cope with the uncertainty? I have my LLETZ appointment in september but keep wondering if I should instead wait… Thank you for reading and I hope the pink bleeding was just something temporary! xx

[red_onion94]

Yes bleeding was one time thing, thank god. Well I don’t cope very well cos I keep having paranoid thoughts that eventually loop will not be enough and it will turn into cancer and they will miss it (I read statistics where women developed cc many years after loop and some other in the first 10 years of it). Because I cannot find studies that prove long term, eg lifelong efficiency of loop in women with high risk HPV like 16 or 18 or 33. So I was even thinking of having a private precautionary simple hysterectomy in 5 years time to avoid the worse. What about you?

[red_onion94]

Also, if you have cin 1 and HPV 16 for 4 years, it is good you get the lletz, in case there are cells higher up in your endocervix which have been missed by a biopsy or smear. It is better you are safer. How old are you btw? Young people till 25 have high chance of spontaneous clearance. I am booked for a lletz in November as well and I feel I will go for it to make sure we don’t miss something more. But my issue is not the lletz so much, but the future …

[Juli]

Hi! thanks @red_onion94 for your reply, much appreciated. And I’m glad the bleeding was a one off!

So in the end in my dwelling I decided to get a second professional opinion and booked an online consultation this morning with a gynaecologist from Spain (I’m Spanish) who is specialised in cervical cancer - I have just turned 30 myself, and thought maybe her advice will help you too

She explained that in more cases than not, CIN I aren’t treated but just monitored, unless after consecutive years of CIN I, the patient struggles with anxiety due to the uncertainty or if any other major causes are involved.

To sum up, she suggested to be patient and monitor (since we are in an early stage, however after reading some stories here, I totally get your thoughts of having missed deeper damage) but that nothing wrong with getting LLETZ done, just being conscious of what you have mentioned about the slight chance of cells coming back and how that might affect emotionally since it’s us making the decision now.

On the other hand, whichever the decision, she mentioned some treatments that can be used in the meantime to boost the immune system. She made it clear that they are still being studied around the full efficacy of it - as she said “If it was the panacea we would not be where we are, but they will do no harm either if you can afford them”. They are, indeed, quite pricey as they are long treatments.

You might already know of it but I thought I’d share it as I hadn’t heard or read about this until today. The products suggested by the gynaecologist are:

• Oral (either one or the other):

-Papilocare inmunocaps: 1 capsule a day for 3-6 months.
-Huvapir, 1 sachet a day for 3 months.

• Vaginal care (either one or the other):

-Papilocare Vaginal Gel: First month every day for 21 days and 7 resting (ideally same as period) then 5 months treatment: 21 days (one on one off) and 7 rest.
-Colpofix spray: 5 sprays a day for 10 days a month - during 3 months.

I have found many case studies around Papilocare treatments used in different stages (treating HPV before cell changes, before/instead of LLETZ, after LLETZ for faster healing, even helping cases of CIN 2/3) and the comparison with patients that did not use it. Indeed there are many successful cases were the benefits were seen - some more than others of course.

I have yet to do research on the other products but so far found Papilocare here https://livbio.co.uk/shop/ sold in the UK.

I’m trying to build my patience, calm my thought and maybe cancel the LLETZ - It’s been two years of abnormalities so far so I might try to give my body another chance at getting better and fighting this!

I totally understand your worries though, I personally keep reminding myself that we are in professional hands! and that whatever the case, it will never go from this to being ‘too late’. I honestly find this such a personal decision that every individual will have their own reasons to make…

I trust that we got this! and that like you said, we will test negative for a long time Good luck in your procedure if you decide to go ahead, and happy to stay in touch through the journey!

[red_onion94]

Oh wow Juli thanks so much for your thorough response!!! Well I am Greek, and btw I was in Spain for vacation a week ago. Visited Seville, Cordova, Granada e Malaga. Honestly, your country, food, and people are fantastic .

I already use Colpofix and indeed seems like helping the microbiota of the vagina. Go for it girl or papilocare as you proposed

On 2022, I treated with flagyl Gardnerella Vaginalis. It was a BV. BV if left untreated can cause more abnormal cells. We need to have lactobacillus crispatus etc in our vagina.

Actually, you did very well that you got a second opinion. 2 years of abnormal cells is not that long. It can take up to 4 years to clear. Mine have been slightly reduced but my doc is scared of the genome 16 in my last HPV DNA test. I would not go for the loop either if I were you and based on only 2 years of cin 1 abnormal cells.

What I do lately also is that may be helpful to you:

Colpofix,
No alcohol,
No smoking anymore (used to do 4-5 per day in the past), plus not being a passive smoker either anymore,
No oral contraceptives,
No pregnancies before (matters),
No stress at work (work the bare minimum) ,
Go for walks under the sun and relax,
Listen to relaxing music,
Eat lots of veggies and fruits daily and started some organic but they are expensive,
2 cups of green tea daily,
A cup of turmeric tea or echinacea tea,
Vitamin C,
Vitamin D, (only if you are deficient)
Curcumin supplements,
Astragalus membranaceous,
Eat also Brazilian nuts, papaya, etc for selenium. Shitake Mushrooms as well, kale, spinach, sprouts, carrots, cauliflower etc. All these have zinc, calcium, antioxidants etc. I get everything from Holland and Barrett.

In 2019-2020 I had HPV 33, I cleared it. (25 years old)
In 2021 I had HPV 51, I cleared it.
In 2022 I had HPV 6, I cleaned it.
In Feb 2023 I was HPV negative when the cell remission started.
May 2023 had new partner and thus June 2023 tested positive for HPV 16.

This is the reason my gyne is eager to do the lletz but I am not sure myself either. My body managed to clear the other strains in a year so why not this one? I should wait a bit maybe since it is a new infection. I don’t have any cancer history in my family. I don’t have autoimmune diseases. I don’t have AIDS. I think smoking played a role in my case in the past and a lot of stress at my previous job in an investment bank. Well this is bygone now.

P.S. I took Gardasil 9 vaccine. My last 3rd dose is this December. Some studies, ongoing ones and others, have shown some benefit on not being reinfected with the same strain once it has cleared. This scenario applies in case like the flu, a virus activates in your body if you come in contact with it again. Eg if your partner cheats on you (hopefully not but you know what I mean! Lol), or you change partners, or anything. Plus, to protect ourselves getting more HR - HPV strains in the future.

Good luck to both of us. Please keep me posted with your future tests and hopefully we will both beat it.

[Tinkerbelle29]

Hi @red_onion94

Would you mind sharing the studies in regards to same type reinfection? Ive always been under the impression, based off studies/research papers/credible sources, that we cant be reinfected with the same type and if we do test positive for the same strains down the line, they are thought to be more reactivations than reinfections… when we clear a strain, our bodies create antibodies against that strain so when we do come back into contact with it, our bodies remember it and we fight it off before it infects us again, its not a pass back and forth virus (men can be reinfected, as they are less likely to create these antibodies/seroconvert and may need more exposure to the strain or vaccination in order to create them, but woman do, so we may pass it back, but we arnt passing it back and forth, its not that kind of virus)… kinda how the vaccines work, they create the antibodies for us tricking the body into thinking we have already dealt with them so when we do come into contact IRL they kick in before it infects us properly, its the same concept with natural antibody creation… 80-90% dont test positive for the same strain again but 10-20% do, and some of these woman arnt sexually active between testing, however if same type reinfection was happening, there would be alot more than just 10-20% that experience “reactivations”

Too name a few: wont let me put this in the same comment - too many charecters lol …

[Tinkerbelle29]

“Most sexually active couples share HPV until the immune response suppresses the infection. Partners who are sexually intimate only with each other are not likely to pass the same virus back and forth. When HPV infection goes away the immune system will remember that HPV type and keep a new infection of the same HPV type from occurring again. However, because there are many different types of HPV, becoming immune to one HPV type may not protect you from getting HPV again if exposed to another HPV type.”

https://www.nccc-online.org/hpvcervical-cancer/hpv-and-relationships/

"Conclusions

In conclusion, low rates of seroconversion following HPV infection in men, coupled with a lack of demonstrated protection against infection among those that do seroconvert, may leave men susceptible to recurrent infections, especially with HPV type 16, the cause of anal, oropharyngeal, oral, and penile cancers in men. In contrast, nearly 100% seroconversion to all included types following HPV vaccination has been documented in men. Thus, HPV vaccination is the only reliable method to ensure immune protection against new HPV infections and subsequent disease in males"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4680989/#:~:text=Low%20seroconversion%20rates%20following%20HPV,HPV%20infections%20and%20subsequent%20disease

A small danish study was able to identify latent/dormant infections in women previously treated for cervical dysplasia

"Conclusions:

HPV can be detected in cervical tissue specimens without any evidence of an active HPV infection, indicative of a latent, immunologically controlled infection. Modeling studies should consider including a latent state in their model when estimating the appropriate age to stop screening and when evaluating the impact of HPV vaccination."

https://pubmed.ncbi.nlm.nih.gov/35481603/

"Natural Acquired Immunity Against Subsequent Genital Human Papillomavirus Infection: A Systematic Review and Meta-analysis

Results:

We identified 14 eligible studies that included >24,000 individuals from 18 countries that examined HPV natural immunity. We observed significant protection against subsequent infection in female subjects with HPV-16 (pooled RR, 0.65; 95% confidence interval, .50-.80) and HPV-18 (0.70; .43-.98) but not in male subjects (HPV-16: 1.22; .67-1.77 [P= .05 (test for heterogeneity)]; HPV-18: 1.50; .46-2.55; [P= .15]). We also observed type-specific protection against subsequent infection for a combined measure of HPV-6/11/31/33/35/45/52/58 in female subjects (pooled RR, 0.75; 95% confidence interval, .57-.92). Natural immunity was also evident in female subjects when analyses were restricted to studies that used neutralizing assays, used HPV persistence as an outcome, or reported adjusted analyses (each P< .05)."

https://pubmed.ncbi.nlm.nih.gov/26690341/

“A study released early in 2013 of women 35 to 60 years old found that HPV in women at or after menopause may represent an infection acquired years ago. Think of it like chickenpox—that virus can lie dormant in the bodies of people who were infected as children, then come raging back as shingles later in life when the immune system weakens. It’s the same with HPV. The reactivation risk may increase around age 50. This is dangerous because of HPV’s link to head and neck, cervical, vulvar, vaginal, penile and anal cancer. It is the most common sexually transmitted disease in the US.”

https://www.menopause.org/for-women/menopauseflashes/sexual-health/hpv-and-menopause-what-women-of-the-sexual-revolution-need-to-know

Good news is, as the vaccines available now are meant as more of a preventative (prophylactic) and not a therepeutic method and although there are mixed opinions/studies on whether gardasil9 can help with a strain we already have, many who get vaccinated after infection still experience reactivations so its not proven or designed too be able to do this… but they do have actual therepeutic vaccines in the works right now that will be proven to cure it

P.S i hope you dont take this the wrong way lol its just if the information/facts have changed, i dont want to be spreading the wrong information, theres already too much misinformation out there i dont want to be adding to it lol xx

[red_onion94]

@Tinkerbelle29

80-90% dont test positive for the same strain again but 10-20% do, and some of these woman arnt sexually active between testing, however if same type reinfection was happening, there would be alot more than just 10-20% that experience “reactivations”

this is a very interesting point btw. This explains why those who treated for CIN stayed instact after 30-40 years without re-appearance of CIN while others got CIN or CC again even after 30-35 years, due to some sort of reactivation in menopause. Hmm, I will keep that in mind. Thanks for sharing that too

I was coming back from Spain, and in the plane I met a woman, age 57. She did LLETZ 2x when she was at her 20ies and since then no issues. We talk about 30+ years staying aways from the disease and she had 2 adult kids. She really gave me hope. We had this discussion around 1-2 o clock at night lol. Not sure though, for how many years after lletz and dormant HPV can someone stay healthy with no subsequent issues. This is a research i really want to conduct.

[red_onion94]

@Tinkerbelle29 can you send me a journal article that states that only 10-20% of women treated got reactivation? I cannot find such a paper in the academic library. Only found one stating that 5% can be redetected after year one from latency and by 14% by year 5 or 6 since latency. I suspect the number of reactivations is way higher.

[KatieT]

I have read all of this with interest. I have hpv 18. I first had lletz aged 22, and have been clear ever since until boom, perimenopause. I was hpv positive again aged 43, and am 45 now. Still not cleared it but awaiting test of cure after my second LLETZ (CIN 1 and 2). I am not hopeful as endo cervical margins were unclear. Gynecologist suggested if I am still testing positive, hysterectomy would be an option. I am not sure about this as it seems extreme given I don’t have CIN3 (yet) but will keep an open mind. In the meantime am taking all the supplements you all are plus crispatus, which I had to buy direct from Italy. X

[red_onion94]

(post deleted by author)

[Hop1]

Thanks for this is very good and informative. I had LLETZ for CIN3 and CGIN ,2 and a half years ago going for Colposcopy every 6 months. I had same results since Lletz, HPV 16 positive no abnormal cells but on my last one this summer results were HPV 16 positive ASCUS.
Gynecologist said come back in 6 months again because is only ASCUS.
I was really hoping for no abnormal cells result again but it is what it is.
If I get abnormal cells again I will most probably just do another Lletz my gynecologist said that as long as you do close monitoring every 6 months it should not get to cancer before treatment. But sometimes I think Hysterectomy would be just easier , I already had my kids so I am lucky in that department.
But I understand that with Hysterectomy you have a higher chance of VAIN or vaginal cancer and that really scares me. I like my sex life and is very important for me.
My thinking is to keep as healthy as possible and hopefully HPV 16 will be negative before Hysterectomy. But let’s see what happens… again thanks for the information.