feeling lonely

• By meliza4
• Posted October 14, 2009 at 10:00 am
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NO! You don't need to do that. Instead, work on improving your health, particularly your immune system so you can fight this! I know it feels like a death sentence, but the shock of the news WILL wear off. Also talking to others like on this site, will make you realize you're not alone and that others are living with this virus. I'm not going to lie to you, it has not been easy with me either since I was diagnosed with HPV and dysplasia. I still struggle with the fact that I have an STD, probably for life until a cure is found, and don't know how I'll be happy in a relationship again. But I had to focus on one thing first, which was improving my health since I needed to rid myself of the precancerous cells. I just got my results back a few weeks ago and it was benign! I am so relieved and now feel that I can continue fighting this and move forward with my life somehow. Please try to stay positive and just focus on one thing to overcome this. Also, don't beat yourself up for getting this since it is too easily spread and almost difficult to not get. Take care!

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• By sandybeach054
• Posted October 14, 2009 at 10:06 am
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no way!! I had the virus for 3 years and now it is gone!!

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• By phoenix73
• Posted October 14, 2009 at 12:19 pm
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YOU'RE NOT ALONE!!! i was diagnosed w/ high risk hpv about two wks ago (normal pap) and was/am devasted too..BUT hearing from others on the subject does help me feel strength. I've started RELIGIOUSLY taking my multi vitamin w/ folic acid (800mg) / L-Lsine (researching the dim supplement), watching my diet, trying to stay positive, and boost my immunity..basically helping my body to help itself!! Try to remember that the MAJORITY of ppl who have this NEVER know because their body fights it off/suppresses it. In the 2 wks since, my life has changed..i'm desperately trying not to lose who I was/am (a woman who wants/needs to feel pretty,smart, valuable, and sexy). I come on to this site probably 2-4x a day...just to feel not alone/supported. HOPE THIS HELPS....

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• By phoenix73
• Posted October 14, 2009 at 12:21 pm
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DON'T YOU DARE GIVE UP BEFORE THE RACE HAS EVEN BEGUN!!!!

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• By corellin
• Posted October 14, 2009 at 12:22 pm
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Hi Story -- About 50% of women will get some kind of "high risk" HPV in their lifetime, but less than 1% of women will get cervical cancer. "High risk" just means that in some, very rare cases, a person with that type might develop cancer, if it causes lesions that are left untreated. That's to distinguish it from the "low risk" types which cause genital warts. But "high risk" doesn't mean you're at high risk for developing cancer. In fact, even with "high risk" HPV, you're still at extremely low risk for developing cancer.

I know it's hard, but it's best not to worry until you get the results of your pap smear. If you have an abnormal pap smear, then the doctor is likely to give you a colposcopy, to check for abnormal cells. If the colposcopy/biopsy comes back with moderate or severe dsyplasia, the doctor will likely recommend a LEEP. The LEEP will remove those abnormal cells and usually results in clearance of the active HPV infection.

Honestly, I think your doctor has a poor bedside manner and is scaring you unnecessarily. It never hurts to do a will -- but definitely don't do it in connection with the HPV test result!

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• By jamiegirl
• Posted October 14, 2009 at 2:03 pm
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corellin - just want to clear something you wrote..."But "high risk" doesn't mean you're at high risk for developing cancer."

That is because most people with high risk hpv who have lesions get them treated early enough. If those with high risk did NOT get the lesions treated, I'll bet most people with high risk WOULD be at a high risk for developing cancer. What do you think?

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• By flowershoplady
• Posted October 14, 2009 at 2:09 pm
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i'm not corellin, but i'll respond to your note, jamiegirl....those with high risk hpv are NOT likely nor at high risk to develop cancer, even without treatment. this is why I don't like the term 'high risk'....makes people think they're at high risk for getting cancer. in fact, what it means is that that particular strain of hpv has the potential to cause cancer. it does not cause cancer in most women. simply having the hp virus, including a high risk strain, doesn't mean one will develop any problems at all. the longer a woman has an active hpv infection, the more likely dysplasia/cancer will develop. it's also why i don't like the term 'pre-cancer'.....because women with dysplasia will not necessarily have their dysplasia progress to cancer, even if it's not treated. that said, most of us are risk averse, and that is why severe and even moderate dysplasia is usually removed because we don't know which cases will develop to cancer.

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• By rkh
• Posted October 16, 2009 at 4:43 am
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What were the determining factor's that made me one of the 1% of women that develop cervical cancer? What do you mean by a long term active infection? How long does one have to have an active infection before it turns to cervical cancer? I had a Leep in 1998 since then, I have had yearly pap-smears. I was told "within normal limits" for the result's of the paps.

I was diagnoised in March 2009 with stage 1b1 cc (squasmous cell). My gyno(not onco/gyno) said scar tissue from my Leep gave the false negative results of all my annual paps. I haven't asked my gyno/onco this question, I will in December when I go for my 2nd, quarterly exam.

FSL, I know none of this matters now, it's in the past. I am going forward with great prognosis. However, I still want to know what happen to cause the progression to cervical cancer? Do you blame me?

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• By irisheyes19782002
• Posted October 16, 2009 at 8:39 am
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I know it is a scary place, in fact we all do. But the key to everything is to be possitive! I was diagnosed with hpv and displatia about 6 years ago. I had a cervical cone done and I didn't go back. I was scared and too busy to go for a follow up. A few months ago I had a pap done (my first since then) and found out I had cervical cancer. But I REFUSED to be upset. My family has a major history of breast cancer and I had assumed, ever since I was younger, that I would eventually get it.
Although most of my family was devestated I refused to even call it cancer because the word cancer scares people. So after everyone was informed we would only refer to it as "bunnies", cause come on how can you be afraid of bunnies :). I then had a leep done and the cancer is gone. So think positively and you'll get through it!

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• By flowershoplady
• Posted October 16, 2009 at 10:45 am
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i hear you, rkh, and i don't think there's a definitive answer. yes, there are false negative paps which may have hidden a problem, and if your doctors weren't doing regularly hpv testing, they may have missed that a problem existed. when an hpv infection is persistently active, doesn't clear in 6 to 12 months to 18 months or so, the chance of dysplasia/cancer development is that much higher. and in 1998, did the leep truly remove all the dysplasia? a lot would depend upon the after care and follow ups. hpv testing is relatively new. and, when your paps were in normal limits, do you know if they were truly normal, or were they ascus? if ascus, then there was probably dysplasia - that's my non-medical opinion. maybe your gyn/oncologist can shed more light on this though it may be tricky to get him to conjecture on the past, particularly of a previous doctor's care, but it might be helpful for you to just know what all those pap tests results were, whether they were all truly 'normal', and even then, they could have been false negative. i'm really sorry you're in this situation. hope my info/ideas are helpful.

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• By corellin
• Posted October 16, 2009 at 10:57 am
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flowershoplady -- thanks for clarifying -- that's exactly what I meant...

rkh -- I'm sure no one is blaming you for getting cancer. Personally, I think it's kind of like the "perfect storm" effect. I think it's a bunch of factors all coming together that equal very bad luck and we can't really know what all those factors are. The main factor is getting infected with HPV16 which is more likely to progress than any of the other "high risk" strains. That's why I think it's bad that they lump all the "high risk" types together as if they were equal risk (which they're not) and also why the Cervista test has now been developed so that if women test positive for "high risk", they can be further tested for HPV's 16 or 18. I'm curious whether you were ever tested for HPV while you were having "normal" pap smears, because I'm wondering whether the scarring of these procedures impacts the ability to get an accurate HPV test as well as an accurate pap. And I'm especially wondering because I've been relying on the HPV test for my followup after LEEP, but I've been wondering about accuracy issues.

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• By lisharie
• Posted October 16, 2009 at 7:25 pm
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Story,
Just get your paps tests and stay positive. And go to well respected websites to get information.

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• By rkh
• Posted October 16, 2009 at 8:50 pm
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Hi Corellin,
I have yet to EVER have an hpv test from any doctor. My gyno/onco said it is unneccessary because the treatment is the same, regardless. I was frustrated when he told me that and still am. I have a great deal of respect for him(mostly of his abilities from his credentials). Furthermore, I would like to believe we are in the process of established a mutually satisfying repor over the next five years. However, I am not so sure sometimes? At this point, he doesn't want to do an hpv test that I as his patient, am requesting. I do detect a sense of arrogance in him that is, he is the professional and I should almost like blindly trust him!!!!!
He is the medical director of the entire oncology department in several hospitals where he is a gynecological oncology surgeon. I'm not sure yet if this is relevant or not, but he is also very strikingly handsome. I can't help but to wonder if all of this plays into his disposition of egotistical errogance?

Regardless, I should be able to have an hpv test if I request it! Anyway, all I have to go on for now is my gyno said scar tissue of the cervix from the Leep procedure can give false negatives from paps-smears. Thank you for your interest and I hope you get the answer your looking for as well:)

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• By rkh
• Posted October 16, 2009 at 9:20 pm
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Hi FSL,
As I told Corellin, I have yet to EVER be tested for hpv by any doctor!!! You reminded me of something I haven't done, get copies of ALL of my medical records from the last 10-11 years.

FSL, I believe it is possible to have positive margins when told you don't have, what do you think? I also believe pre-dysplastic cells may not be detectable and can easily remain after a Leep. It takes a year for the cervix to regenerate after a Leep. What was growing inside the area left behind after the portion of the cervix was excised?
I won't know if my gyno/onco will answer my question about scar tissue after a Leep procedure hiding dysplastic cells?

Maybe I shouldn't do this because it is irrelevant now?
I suppose this is all power for the course.

Thank you for your interest:)

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• By marsha123
• Posted October 17, 2009 at 10:10 am
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I don't think your doctor has explained this illness to you very well, so it's up to you to find out information about it on the internet. HPV is very common, and only deadly if you have an aggressive form and you ignore it's treatment.

Educate yourself, and then try to help educate others so there will be less ignorance and fear associated with HPV! We can make a big difference one person at a time! Supportive hugs, M

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• By flowershoplady
• Posted October 17, 2009 at 10:37 am
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marsha, hpv is NOT deadly 'if you have an aggressive form and you ignore its treatment'. in fact, most women with hpv, including high risk hpv strains, will clear the hpv without any impact from the virus.

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• By bella24
• Posted October 17, 2009 at 12:03 pm
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dude no! do not do that, do not think that.

just be smart about using protection!

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• By Lynne_teacher
• Posted October 17, 2009 at 1:17 pm
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No, you need to make changes to your lifestyle and beat it!

From today, start eating: low sugar, lots of fruits and veggies, stopping eating meat and smoking and pick up taking vitamin A & C.

Also consider taking an all-in-1 HPV support product like Papillex. The above program is what brought me to being free and clear.

Cheer up, get positive and make the changes needed for your body to put up the good fight.

best of luck!
L.

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• By rkh
• Posted October 18, 2009 at 3:53 pm
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Thank you so much for making that statement FSL:) That's exactly what I have been talking about with you regarding my situation. I am wanting answers as to why my HPV persisted and progressed to cervical cancer and didn't clear up like the majority of other women's have???????

Perhaps I will NEVER know and will come to terms with that as I am attempting to do with this evil disease. I have requested my medical files from the past 10-11 years.

I am angry and scared because I am still having bladder problems and other problems almost six month's post-op. I decided I am going to schedule an appoinment with a Urogynecologist at Indiana University Medical Center tommorrow, just for starters.

Finally, from where I am sitting, any and every post on this web-site serves as a form of education. We are all at liberty to take information from any of the posting's and use it as we need for our own circumstances.

Thank you for being here FSL:)

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• By flowershoplady
• Posted October 18, 2009 at 4:41 pm
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hey there, rkh. i can understand wanting to know the answer to 'why'. sometimes there's no explanation, at least no logical one which is what we're usually looking for....and that's where acceptance becomes necessary to find a sense of peace. in your situation, i think there are two issues....one is why the hpv infection persisted and second is why it wasn't dectected. the first question of why it persisted for you? that's where there's no one reason for knowing why you were the exception to the rule. the risk factors include smoking, lowered immune systems (immune deficiency diseases), mother/sister history of cervical cancer and thus an inherited inability to clear hpv infections, vaginal infections and inflammations, but you may not have any of those risk factors and still have a persistent hpv infection. the second question is more about your medical care....was the dysplasia fully removed with your first leep, did the gynecologist run appropriate tests (colposcopy, biopsies, ecc's - and, here's the one you know you didn't have....hpv testing). and, did you get truly 'normal' paps, or were some of them 'ascus'? the lack of hpv testing, particularly in the last 5 years, when hpv testing has started to become routine, particularly for women over 30, is, well, problematic.

and, rkh, i'm sorry to hear you're dealing with problems post hysterectomy....many of us have had issues, as well, and i hope you're able to find solutions that make you feel better, and restore quality of life.

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