Help--7 years of normal paps, suddenly CIN 1/HR HPV

[LAgirl81]

Hi!

Yeah I wish they could specifically type the strain of HPV we have. I guess it's too costly for the insurance companies and ultimately I guess there's no true benefit knowing which kind you have, especially since HPV works differently in every person. Meaning, even if you had the more virulent kind of high risk HPV (16 or 18), it may not affect you the same way as it would affect the next woman.

Regarding the suppositories, I really would encourage that you seek a doctor's advice before using them (a naturopathic one). You're supposed to insert them all the way up against your cervix because they act as a type of natural cryosurgery -- they encourage the abnormal cells to slough and shed, but without the risks of a real cryosurgery. They get kind of annoying to use for 3 months, but in retrospect, DEFINITELY worth it -- and by annoying, I mean they can be slightly irritating but eventually your body gets used to it. There really can't be any risk of TSS because the suppositories melt from your body heat, plus the ingredients are all organic and natural, no chemical crap-- you're supposed to wear them at night so they don't leak out when you're walking around. So yeah, wearing pantyliners everyday for 3 months is also a must. But trust me, I would do this all over again if I had to! I am worried that my dysplasia will come back but I won't hesitate to do the whole regimen and suppository route again.

Speaking of having natural ingredients, my doctor also suggested I switch to all-natural, organic tampons that you find at health food stores (Whole foods or Trader Joe's). I never knew this, but regular tampons have a lot of synthetic materials and other chemicals (ESPECIALLY the ones that are deodorized) that are bad for your body, which is part of the TSS problem.

Hope this helps! I know the waiting is the WORST part of all of this, but you'll make it through it, whatever you decide to do. Take care

[CynwithCIN]

Hope everyone had a nice Thanksgiving!!

Hi Briea, LEEP can cause scar tissue, making it difficult to see the transformation zone. I was informed this happens on occassion, but isn't necessarily the norm. I was told by a member on here I fall into a small group of people this happens to. Medically, it was a very quick & simple procedure to get around it in order to obtain cells for my pap.

For high risk probes done after an abnormal pap, or by request, they are checking for strains, 16,18,33,35,39,45,51,52,56,58,59,& 68. In my records the doctors have noted types 16 & 18 in the past. I was under the false impression they knew I had these types specifically. Turns out this was just a notation because they are so highly linked to cervical cancer. When I found this out I asked if I could be typed specifically. My doctor said yes its possible to do it, they just do not because it would not change the protocol any. Though it would be nice to know, I would much rather them error on the side of caution. I like the fact the protocol is the same straight across the board for high risk HPV. It is possible down the line as more research is performed that other strains of high risk HPV may be linked directly to cervical cancer. I remember around the time I had my LEEP they had not linked HPV to 100% percent of cervical cancers yet. They said it was responisble for some. In a couple short years time, research has made a huge leap. (Pun not intended) Who knows what they will be saying another couple years from now. Even though HPV has been around for quite some time, the knowledge of its significance is still relatively new.

Anytime. It was different grades of lesions within the same tissue sample.

Thanks Briea, when I say its a part of our life now, I mean it in terms of we must be diligent from this point on. My doctor believes once you get HPV, you will have it for life. Kinda like herpes. I believe this too. Which means we must be on top of our annual exams, and follow appointments. Since my margins were not clear, and I have a coexsisting HSV infection, my chances of reoccurance have been increased a bit. My latest pap was performed on the 15th. They obtained cells from the transformation zone/ECC. This is where most cell abnormalities start out, so if this one comes back clear, I will feel much more confident that I have this under control. I had an ASCUS back in Feb of '06, the following in May said epithelial cells with reactive/inflamatory changes. The one in Dec came back normal. The one after that came back endocervical transformation component zone not present or scant. The doctor took no further action. My pap in August came back the same, so they had me go back in to repap & that came back the same as well. This is how my doctor came to the conclusion I have scar tissue & dilated on the 15th. Keeping my hopes up I will be getting back good news next week!!!

I have never used suppositories, but isn't it the material in tampons which links it to TSS?? I do have tons of different kinds of supplements in my cupboard since 2005, and I am hoping Acyclovir may be helping to suppress as well since it is an anti-viral medication.

You ladies are awesome, so glad you are on here!! Have a wonderful Thanksgiving weekend!! Wishing everyone clear paps in the future!

[BE 123]

Hi lagirl, I may see a naturopath over Christmas for the suppositories, assuming I can find a reputable one who has some knowledge of cervical dysplasia! I so wish I lived in a bigger city, there's no one within a 200 mile radius from me according to the naturopath website! Long shot, but is there an online site or phone number to call to check their credentials and reputation?

So, it is true that one can't be tested for the specific strain(s) of HPV, just the class it falls under? My second opinion gyn said you could, the gyn-onco said you can't, so I don't know which one to believe. I know they certainly have the capability to, but perhaps those are special labs for studies/publications only.

I don't use tampons, but I will buy the non-chemical ones you suggested to get the suppositories up there. I have read 88Shadow's posts and she was on a very similar regimen to yours which proved successful for her as well.

I've been tossing around the Beta Mannan purchase in my head, even wrote out a check, but mainly due to the sketchiness of the website (and to a lesser extent the lack of positive testimony), for the time being I've decided against it. Aloe vera and vitamin E won't hurt, but the question is whether it's really just aloe vera and vitamin E in those capsules!

How long were you on your regimen (3 or 5 months?), are you continuing at this moment, and if so, for how much longer? Do you have a "maintenance" regimen once you are in the clear?

Girls, I am (hopefully UNDULY) concerned that my gyn-onco wasn't able to visualize all the bad areas. If I only had one small-medium bad area it seems soooo unlikely a pap would've picked it up! Please tell me they know what they are doing and that I am overthinking. I have read too many accounts of women who had the bad pap-clear colpo combo (several times) with scary diagnoses.

Again apologies for all the questions and concerns...I really never thought I'd have to know so much about my cervix and other potential reproductive problems. How I wish I could turn back the clock!

[BE 123]

Hiya Cyn

Your info is so helpful. So, to be clear, your doctors noted 16/18 in your chart but said they don't know if you actually have either or both of those, just that they are responsible for the overwhelming majority of cancers so they are playing it safe? That is a good policy. I see what you mean, I often think it may cause me more mental harm than good to know which strain(s) I have. It would probably not change my regimen, but it may cause me to undergo leep sooner. (instead of waiting till March to recolpo)

Was the dilation for a colpo or a repap? Was it an easy procedure and was the doc able to see/get everything?

I hope the Acyclovir will help you as well--I sure wish anti-virals were broad-spectrum and attacked HPV as a byproduct!

I keep hoping for a therapeutic vaccine (cure), I don't know how, since HPV has been around since the dawn of man and still nothing you can do to combat it directly once you have it.

Has anyone heard of or tried Aldara (imiquimod)? I know it's for warts, but I think you can get it compounded as a suppository too, I'll ask about that if I get bad news in March. I believe it is a local immune-booster and that is how it gets rid of most ppl's warts.

[LAgirl81]

Hi Brie!

Ok firstly, don't wish you could turn back the clock. And don't think that you don't ever want to date or have sex again...that's no good for your mental state! It's completely understandable to be put off by sex, etc, when you first get diagnosed-- BUT you must remember that everyone and their mother, LITERALLY, have HPV. The moment genitals come in contact, in any way, there can be transmission of HPV. So unless you planned to devote yourself to the Catholic Church and don a habit for the rest of your life, then chances are you would have come in contact with HPV in your lifetime. I remember going to a good friend's house from college this past summer where she lived in a big house with 5 other girls. Later on that night, my friend tells me that all 7 of us have dealt with HPV to some degree (abnormal paps, dysplasia, etc). That fact floored me and also indicated to me how RAMPANT HPV is! And while sex with different partners can definitely increase your chances of getting HPV, none of these girls (myself included) are into casual sex with many partners. So it's truly hard to avoid!

That's great that you're considering seeing a naturopathic doctor. I think they're great! They're a great mix of both words-- traditional western medicine and homeopathic/naturopathic preventative medicine. And preventative health is essential for those of us with HPV! They should all be trained the same way, but try searching for one that has experience with women's health.

Also, the American Association of Naturopathic Physicians and they will list all the doctors across the country with their credentials. That's how I found my doctor and I loved her! What's also great is that they can help treat any other health ailments you may have. Of course, the more compromised your immune system is, the harder it will be to suppress your HPV, but it's not impossible. I only say this because overall I'm pretty healthy and have no other health isssues, so the health regimen my doctor put me on was geared towards pumping up my immune system and suppressing my HPV.

The suppositories were for 3 months -- you also have to give your body a month break after the routine before you do a re-pap. I haven't been continuing the regimen but I was considering keeping up with the suppositories. I think if my next re-pap in February is still abnormal, I will get back on the suppository regimen for a few months. Repeat colpos and paps are super irritating, but hearing the "normal biopsy" news was one of the greatest moments ever! And so worth the 3 months of gooey suppositories (sorry for the descriptions, but it's true).

Let me know if you do get on the regimen. I have a couple of tips for the suppositories, especially the one you use once a week that is VERY irritating! But like I said, worth the discomfort in the end.

The suppository regimen is very successful for mild dyplasias. For moderate and severe dysplasia they do a type of herbal cyrosurgery where they paint your cervix once a week with some type of herbal solution, and then wash it off. Sounds painful and uncomfortable but it has great success, too. Have you read Tori Hudson's article on Preventing and Treating Cervical Dysplasia? It's really informative and encouraging.

Take care! Try not to stress and keep eating healthy and exercising. Have a nice weekend!