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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


Hi Cyn, I'm so glad to hear you met someone in that short time between your LEEP and now. It has only been a year and a half, right? Women like you and Timber give me some hope, even though dating is the last thing on my mind right now, I feel so dirty and ashamed.

Ok, regarding HSV, does your husband have 1 or 2? I did a LOT, A LOT, of research on HSV as it was (stupidly) my primary concern (when HPV should've been!) and depending on how long he has had HSV you may not even have gotten it from him. Over a year, and the transmission rate drops sharply (I assume you haven't been using protection, which is very effective although not perfect against HSV). Have you looked at Terri Warren RN's site? (I'd link you but I think we are forbidden to do that.) If I remember right, the male-to-female transmission rate of HSV is 10% (that is 10 out of 100 women will get HSV from her partner if they abstain during outbreaks and have regular sex several times a week). Those odds are pretty good. So, don't assume you have it already, esp. since you haven't been with your husband many years. Anyway, you are probably very up to speed on this.

Is it really true that most women with hrHPV do not show cervical changes or if they do they may clear it before they know? Or is that just something they say as consolation? It doesn't work, because I now know there are PLENTY of women suffering through this.

Well, I was wondering about Gardasil and its effect on hrHPV clearance in the long term. Of course we don't know that yet, but, say your hrHPV goes into a state of dormancy then crops up 5 years later. By then the vaccine has fully kicked in, will it help? Or will getting it now, while your body is trying to fight the HPV, do more harm by "overburdening" the immune system? It's so confusing.

Good luck with the cyst resolution!
I can relate to the diry & ashamed feelings. To an extent the "ick" factor is still there, even now, but I manage to deal with it a little better as more time goes on. There is some comfort in knowing I am far from being alone in this.

Thanks, so am I, he is my world. We met at work, and I just secretly adored him for the first couple months. Then we were in a position where we got the opportunity to actually talk to eachother. We sat together at a company going away party for a fellow employee, and our first official date was on December 31st 2005. We got married on December 31st 2006. Sounds fast to a lot of people, but it was absolutely the smartest thing I have ever done in my life. Never been so happy, he is amazing, I am truly blessed. Before this I had never even lived with a man, and I had been in a long term relationship in the past. Not the type to make sudden leaps, but in this case it just felt right. Best thing about it, I adore his family, and my family adores him. Never thought that was possible after watching my brother & his wife & the whole inlaw saga.

I always thought most people acquire type 1 at some point in their lives. My husband has type 2. He acquired it years prior to knowing me. As for the odds, what can I say, like everything else in my life the odds seem to be against me. I do have it now. He successfully managed not to pass it on to former girlfriends, but I guess I was the lucky one. He only gets outbreaks every six months or so. Months into dating him I got my first outbreak. He takes Acyclovir twice a day only when he gets a breakout. I seemed to be suffering more regularly, which I hear is normal the first year, then it slows down. I was getting them every month or so it seemed at first. I was doing the same as him initially, took two on the onset of one, but my doctor advised that I go on it daily. So I now take Acyclovir once daily which has been successful for the most part. If I were single still & acquired it I would probably be a complete basket case by now. I am basically a walking STD. I would probably swear off sex for good. However, getting it from the man I am married to, though still unpleasant, is much easier to deal with. I did some research on the effects of Acyclovir on HPV. One study seems to hint towards benefits, but nothing concrete that I have seen yet. It would be nice if it helped to suppress both. Wishful thinking though I am sure. I will try to find that site, thanks for the tip!

Yes, there are over 100 strains of HPV, most harmless. For most people its a virus that they acquire & their immune system suppresses it without any knowledge of its presence. The only time it becomes apparent is in cases of certain strains. The strains that cause genital warts can be emotionally devastating for people, and even a fewer amount of strains cause cervical dysplasia. Its so tricky to predict who will & who won't be ultimately effected by the high risk strains because of the nature of the virus. Which is why I personally feel no woman should ever go more than a year without having a pap regardless of her past history. I went from normal my entire life to CIN III. I am still EXTREMELY skeptically of the basic pap smear. They are not 100% accurate. I think it is more likely I got a false negative pap the one prior to my bad one in 2005, than it progressed that rapidly. Not worth wasting too much time on however, since noone will ever be able to tell me for sure. What I don't understand though is why a woman who has tested positive for high risk HPV, and been diagnosed with CIN in the past would not have a colposcopy done in oppose to the basic pap post any treatment or surgery. I sometimes feel like I am wasting my time with the paps, and I would rest more easily knowing they were taking a closer look at things with a scope in oppose to swiping random cells thinking if abnormal cells are present, eventually we will catch it. I am sure its all money driven which is just a horrible thought. Again, hopefully the fact they are offering a vaccine for both men & women for the high risk strains will prevent the little ones of our future from having to go through this.

My understanding on Gardasil is it will only be effective on the strains you have never been exposed to. So, if you have a strain lying dormant, I believe the vaccine will still be rendered ineffective. However, I have wondered if it may help work towards suppressing a strain you may already have, but again it is likely just more wishful thinking on my part. From a science standpoint not sure its possible, but it would be really nice if it worked that way! Don't think it will do any harm though as far as overburdening ones system. My doctor knows my HPV status, and she recommended even though I am married to put up the bucks to get it done in order to protect myself from the high risk strain(s) I have not acquired. Again though, not seeing the need for me to do that at this juncture. When the FDA approves it for women in my age bracket, then I will likely get it done.

Thanks. I have my follow up ultrasound on Tuesday. Hopefully it will go away on its own, afterall, it was an unwelcomed guest.

Enough about me, where are you at with your situation. I see you have CIN I with high risk HPV. Was this result based on the pap, or have you already gotten the colposcopy & biopsy?? Are you still going in for a second opinion??
Hi there brie,

Your doctor seems to have given you some pretty sound advice. Mind you, I've spoken to about 6-8 different gynecologists and doctors about their opinions and knowledge on HPV, LEEPs, cryos, etc. NONE of them agreed 100% on any one particular thing, except for maybe that HPV is the main culprit in causing cervical cancer. I posted earlier on my trials and tribulations with different gynos. When I was diagnosed with CIN I-II in May, my primary doctor at my University's student health clinic recommended a LEEP, but she referred me to the univ's hospital and women's health clinic. The gynecologist at the university's women's clinic told me that I needed to get the LEEP and ASAP or it would get worse. Extremely frightened at her words, I toyed with the idea of getting the LEEP over and done with. But part of me knew that there was an alternative out there-- AND I didn't want to mess around "down there" as I want to have babies within the next few years or so.

The next doctor I spoke to was my best friend's mom who has been a gyno for 20+ years. She deals with HPV, dysplasia, LEEPs on a daily basis. I showed her my records and IMMEDIATLEY shook her head and said that I did NOT need a LEEP right away and that I could repeat a biopsy/pap in 3-4 months. I trusted this woman as I grew up with her daughter and knew she wouldn't give me any bad advice. So now I had to totally conflicting treatment recommendations from two different gynecologists. I talked to a few other doctors and received similar conflicting recommendations.

Basically, I decided to wait and watch, as you now, and followed a treatment plan from my naturopathic doctor. After having spent hours reading and researching and talking to many doctors so I could learn all I could on dysplasia and HPV and cancer, I felt more confident in my personal choice. I think the most *important thing* for any woman in this situation is to be PRO-ACTIVE about her health. It sounds to me that you are being pro-active and I definitely encourage that. For me, making my informed choice made me feel more in control of my body and my health and made me more confident that I could beat this thing. And I did!!!

I'm not pushing for one treatment plan over the other. YOU must make that choice but the best thing is to feel 100% confident with your decision. Too many patients are ushered into doing something they know absolutely nothing about. I have 2 girlfriends who were urged to get a cryo for their dysplasia *the same day* when they got their results. This meant they didn't have ANY time to research their diagnosis or the surgery itself. One friend didn't even remember what type of dysplasia she had!!!!

So believe me when I say that what you're doing now is the best thing possible. Mild dysplasia has a VERY VERY good chance of regressing to normal. If my mild-moderate dysplasia regressed to normal in 5 months, then there's a good chance yours will! You must be patient and give your body time to heal. If the naturopathic treatment is not an option for you location-wise, the best way to help your body beat this is to be as healthy as possible. The supplements you listed sounded good to me. Just keep it up and you will be fine! Take care :)
Hey Cyn,

Happy Thanksgiving! (and to all the other ladies here)

Well, my little theory about how many lesions there are may not work because I'm having trouble picturing the relevant anatomy and surgery. Is a leep a straight (horizontal) slice of cervix no matter where the lesion is? Therefore you could not just (lopsidedly) leep out the affected area(s)?

Ugh! I had no idea the leep could invert the cervix too, same as cryo. Do you know if this is the norm or the exception? The implication in the literature suggests it happens with cryo but not the other methods?

The reason I wanted to get it typed more specifically is because certain hr strains are much worse than others--in the US, 16 and 18 are the worst. They are also the most common, and the least likely to be cleared, as well as the most likely to progress to cancer. :(

The other strains (some 30s, some 50s) are also hr but not nearly as virulent and cancer-causing as 16 & 18. And by cancer-causing, I mean 16 & 18 account for the vast majority of cervical and other cancers (the ones that are HPV-related): vaginal, vulval, anal, oral/pharyngeal, etc. I think that is why some labs term the non-low risk strains "intermediate or high risk" (because a few strains are clearly worse than the rest).

My gyn-onco said you can't generally be typed for SPECIFIC strains, just the group it falls into (low, intermediate, or high). He said you would have to go to a special research lab that does this typing. I know this testing DOES exist, but he may be right that you'd have to go to an HPV research center and request it. He says it doesn't matter which hr strain(s) you have if you know it's in that category, but I beg to differ, as a woman I know I'd personally feel a LOT better if I didn't have 16 or 18. Not that I'd automatically be in the clear from not having either one, but these 2 strains cause most true cancers (not "just" dysplasias).

Thanks for including your path reports. Did you have different grades within the same lesion? This waiting is no fun :( and all the while I'm afraid he might have missed other lesion(s) because the colpo was so fast.

Cyn, you cannot think that CIN is now part of your life, after a successful leep, and (several?) clean paps, you must believe that you've beaten this for good, whether it's clearance, or "still there" but doing no harm.

Have you ever used suppositories? I am embarrassed to say I have no idea where to insert them (that is, how far up). I rarely use tampons because I am paranoid about TSS. Lagirl, do you know anything about these suppositories and TSS?

Thanks.
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!
I recommend it just based on my experiences. I had the HPV test in Jan of 2006 through Kaiser since it was the last month I was going to be covered by them. In Feb of 2006 I went to Planned Parenthood for my repap. I got a call back saying, "Your pap was slightly abnormal, we are going to do it again in three months". I was floored at first in 2007 when I got all my records together & read them for the first time. The pap in Feb was ASCUS, but the HPV they did came back negative. So one month I tested positive, and the next negative?? I asked two different doctors about this recently, and they both agreed that it is more likely to get a false negative than a false positive. Had they said it was ASCUS, but the HPV came back negative, I would have told them Kaiser told me I tested positive just last month. Which would have prompted more questions, more of a discussion, and perhaps I would have gotten a colpo. The protocol is do colpo on ASCUS if the HPV test is positive. If nothing else, it would have put my mind more at ease, I have more confidence in the colposcopy than the pap. However, I put the pieces together over a year later, and by then my new doctor decided to start clean slate as in do a pap, and go from there. So here I am. Thankfully my latest was normal YEY!!!! I can go back to a year screening now. Am I 100% confident about this? No, I do have my doubts. I went yearly for paps, always normal. So it either went from normal one year to CIN III the next, or the pap missed the abnormal cells. I have a tendancy to think things into the ground, which isn't always the best thing. Paps have a high false negative rate, but they are making some improvements. Plus the odds are they will catch abnormalities eventually if you go in regularly.

I have learned from this mistake though. The doctors sometimes omit things they do not feel is pertinent for you to know. Another example, I had a CT scan done over the summer which noted "mild fatty infiltration of the liver". When the urologist gave me the results from the scan, he did not mention this. I saw it when I got the report & read it for myself. I questioned my primary about this, and he said given my age & the fact I am at my ideal weight its nothing to worry about. Its very common. Doesn't change the fact that THEY SHOULD TELL YOU EVERYTHING ABOUT YOUR BODY!!! At least now I know its wise to make sure liver function tests are included in my annual blood work, and to make sure I am diligent about getting tested yearly. I didn't mean to go on a tangent. I'm always telling people to get copies of everything just because I have had a handfull of negative experiences. Doesn't mean its the norm, and hopefully others will be in the hands of COMPETENT people....its better to error on the side of caution though I always say. Also it is important to be proactive in ones healthcare I have also learned.

In lieu of a biopsy. Like they do the pap, then apply the solution & take a quick peek with the colposcope at the same time just to be extra diligent. They could take a biopsy if necessary. It would be nice, but because of costs, its likely just wishful thinking. Some doctors will perform colposcopies at request I am hearing, but I have not been so lucky as to find one of these doctors.

I think vitamins, eating healthy, & exercise are all important. I was the portrait of health...always ate healthy & worked out regularly, and I still got slammed big time by the virus. I will admit I was better about my health before my bad pap than I was after my LEEP. Kinda went into a slump you could say there for a little while. I think the treatment of LEEP gave my body the break it needed to help get on top of it. I give more credit to the Acyclovir than anything for my latest good news. It was in 2006 that I started taking it. Could just be coincidental of course, but there is something there that perhaps warrants more research!

So how are things going with you? Are you still waiting for biopsy results to come in? The waiting stinks more than anything probably. Wishing you the best!! :angel:





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