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p_176
post May 2 2006, 08:03 AM
Post #1


Hardcore BUSTie
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Posts: 532
From: Baltimore


therapy won't change anything. been there done that...of course it did acheive the desired effect of me not talking to my exbf from college, but that's another story.
i've been telling the boyfriend he's deluded by thinking this situation is going to get better..but really it was me who was being delusional by thinking i could have a normal life, get married and have sex. that's not actually possible. in the past 2.5 years, there has not been a time when i did not have an outbreak. it has been constant. the amount of and seriousness of surgeries has not changed that fact. frankly, i can't afford financially to pay for surgery anymore. i almost can't afford my house.
he's actually not really willing to risk getting gw, but he still wants to have sex, which makes no sense to me. i've been telling him to start looking around. in the next few weeks, i find out if i have to have the surgery where they take a large section of your cervix out, supposedly to remove abnormal cells, but in my case, i must be immunosuppressed from asthma and allergies, they'd just come back. i'm not wanting to waste the time on the surgery (for which i would need a month off of work, at least, and i don't have near that kind of leave).
so, when your life revolves around surgery, then no, you're not living normally. i'm resigned to that now, so whatever.
thanks for listening though...
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roseviolet
post May 1 2006, 08:18 PM
Post #2


Pacifism kicks ass!
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Posts: 3,064


A couple of years ago a good friend of mine was going through treatments very similar to yours, P. She also got a cone biopsy ... and was married just a few months later. They've been married for nearly 3 years now and are very happy. This can be the same for you, too, if you want it to be.

I, myself, have endometriosis, which is a painful disease that affects my reproductive system. I go through periods of extraordinary pain that makes vaginal intercourse absolutely impossible. This can go on for months at a time. The pain can be debilitating both physically and emotionally. It makes me feel like a bad partner. It makes me feel like less of a woman. So I think I have a good idea of the toll that HPV is taking on your spirit.

But I learned something. I learned that, just because I'm sick, I don't have to give up everything that brings me joy! You can still have a rewarding life, P. And I know it's hard. Lord, do I ever know! There were many times that I felt guilty that my partner had to "put up" with me and my diseased reproductive system (and digestive system because my disease likes to spread). I felt guilty about the emotional strife that comes with my illness. But I found that people who love me - the people who really love me - accept every part of me. Warts and all. I know that my husband wishes that I didn't have endometriosis, but he married me anyway. Because he knows there's a hell of a lot more to me than this disease. Yes, there are obstacles. But we work through them. Besides, there are plenty of ways to be affectionate without vaginal penetration.

P, I don't know you. But I know there's a lot more to you than just HPV. And I'm sure it's worth loving. It sounds to me like you're going through a very difficult time emotionally-speaking. Have you thought about talking to a therapist about all of this?
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pixiedust
post May 1 2006, 07:51 PM
Post #3


Tink's Red headed Step Sis
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Posts: 1,810
From: oklahoma


unless its an issue where he really wants kids and you aren't sure that you can have any, I would not let it be an issue.
I have HPV, it does NOT have me!


--------------------
~May the Fleas of one thousand camels infest the crotch of any person who messes up your day, and may their arms be too short to scratch!~
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alwaysonmymind
post May 1 2006, 05:49 PM
Post #4


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Posts: 32


Have you guys seen all of the HPV commercials. Millions of people have it. We are not alone
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p_176
post May 1 2006, 05:05 PM
Post #5


Hardcore BUSTie
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Posts: 532
From: Baltimore


let me clarify - he does not think it's a problem - he thinks it will go away or get better. i'mnot sure he actually looked at any of the websites i gave him to check out regarding the hpv.
it's not fair to him to be wiht someone who can never have sex again (when i have surgery, i cant have sex or do exercise for weeks at a time, and thus i am not only diseased, but overweight). when i have this cone biopsy (given my medical history, it does not matter that the actual results won't be in for a week - i know it will come back that i have to have basically my cervix removed), that's another 2 months. he should find someone else.
i appreciate that other people's boyfriends/husbands did not have a problem wiht it. but i have a problem with it, and no matter how much we are in love or whatever, that's not going to fix this issue.
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roseviolet
post May 1 2006, 02:52 PM
Post #6


Pacifism kicks ass!
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P, how does he feel about it? What has he said?
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p_176
post May 1 2006, 02:31 PM
Post #7


Hardcore BUSTie
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Posts: 532
From: Baltimore


maybe...i doubt it though. it's going 3 years, and constant outbreaks, and more than 3 surgeries. currently am waiting to hear if i have to have a cone biopsy - i told my dr to just remove everything in there - he thinks that a low grade pap result wont turn into cancer but i've had precancers more than once.
as for the man, i see it as ruining his life - he should not marry me. we can't be intimate, and i have no more interest in sex - i should never have had sex in the first place. i know it's common but no one i have ever talked to had the same symptoms or surgeries that i have had. i'm serioulsy at the point where i dont want to treat it anymore but will let it turn into cancer. that would be less painful than having laser surgeries every other month.
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pixiedust
post May 1 2006, 11:21 AM
Post #8


Tink's Red headed Step Sis
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Posts: 1,810
From: oklahoma


P, don't throw away a good man over HPV! A good man, isn't going to care. Mr. Pixie barely paused when I told him I have it, and that he would likely get it. Most people develope some kind of immunity over time and break out much less. I had breakouts for 2 years and then they suddenly stopped. It is so common, you shouldn't let it ruin your life.


--------------------
~May the Fleas of one thousand camels infest the crotch of any person who messes up your day, and may their arms be too short to scratch!~
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p_176
post May 1 2006, 09:39 AM
Post #9


Hardcore BUSTie
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Posts: 532
From: Baltimore


i just told my fiance that we can't get married 'cause of the hpv.
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suffering
post Apr 29 2006, 01:19 PM
Post #10


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Posts: 215


alwaysonmymind: Thanks for the info. So is there any other way to detect it before it gets to the point of showing up on an abnormal pap smear? So far all my pap tests have been normal but as you say that doesn't mean I don't have it.

The thing is I am very wary of testing methods. I had a chlamydia infection in my urethra for probably two years that no doctor picked up on (not even the urogynecologist who swabbed my urethra!). Finally I went to see a really excellent doctor and he found the infection and treated it and it's gone now. But to say the least I have lost a lot of faith in doctors/testing methods.

Is it true that there is now a vaccine against HPV? I thought I had read that somewhere.
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alwaysonmymind
post Apr 28 2006, 11:24 PM
Post #11


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Suffering, cervical dyplesia does show up on your pap smear, it shows up as abnormal. From there your gyno will look inside your cervix through a microscope to see what's going on. It is possible to have hpv without an abnormal pap smear. Unfortnutely, most people don't know they have hpv until they have an abnormal pap. I think I have had hpv for about four years and didn't have an abnormal pap until last year. My body just changed down "there" I started getting infections really easily and it just feels "different" from what it used too.

I do have an important question. Have any of your doctors monitored your abnormal cells on your cervix to see if they go away by themselves. Mine has for almost a year now and it is still there. He says it is still mild and we will look at again in a couple of months. I just want to have a LEAP already. Have any of you experienced this?
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suffering
post Apr 28 2006, 09:21 AM
Post #12


Hardcore BUSTie
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Does cervical dyplesia show up on a pap smear? Or do you have to request another test?
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bklynhermit
post Apr 28 2006, 06:50 AM
Post #13


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Posts: 436
From: Brooklyn, NY


there are a lot of strains of HPV (something like 100, around 30 of which are sexually transmitted). Some strains manifest themselves as genital warts. Other strains are the ones that cause cancer. If you have cervical dysplasia, that means you already have one of the cancer-causing strains (dysplasia being a pre-cancerous cervical abnormality - which is probably what i have, too). That strain doesn't involve exterior warts. However. HPV is an incredibly common STI, and it's entirely possible to have more than one strain at the same time. Just because you already have one strain that doesn't cause warts doesn't mean you can't also have a strain that causes warts. Or at least, that's the way I understand it.

Either way, you should probably talk to your gyno about it.
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alwaysonmymind
post Apr 27 2006, 09:56 PM
Post #14


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I have hpv but my doctor says its cervical dyplesia. When I went to the gyno I showed him a little bump like a pimple I had on my vagina. he said it was just a pimple most likely from shaving. So that eventually went away and a year later I have another pimple. It's very small. Do you think this can be a wart? Do any of you have these symptoms?
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p_176
post Apr 27 2006, 06:52 AM
Post #15


Hardcore BUSTie
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Posts: 532
From: Baltimore


dandelion - laser surgery - think carefully about it - i have had 2 so far, and will probably have another in about three weeks.
it's painful recovery, but a quick recovery (about 2 weeks, with the worst of the pain in the first 2-3 days)...it's really not any better than acid treatment - the hpv can come back, i think it's like 20-30% chance of recurrence?
as for sex - my dr is like, well even if you don't have an outbreak you can still pass it on...so just have sex/it's your boyfriend so he's ok with the situation....my response is just that i don't think it's fair to my boyfriend - it's not his problem it's my problem....i just really feel like i should never have had sex in the first place...he should just find someone else who is healthier than i am.
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fuego_lento
post Apr 26 2006, 08:30 PM
Post #16


Hardcore BUSTie
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Posts: 688
From: NYC


Bklyn, I was going to say the same thing about it being ridiculous your HMO wouldn't cover the biopsy. Glad PP was wrong about it.

Dandelion, P_176, I feel for you. I had an easy time with warts -- mine cleared up in 2 weeks and after one little "follow-up" wart a bit later on, I haven't seen any activity since. Thing is, I have an incredibly persistent case of herpes (Valtrex may work for some folks, but not so much for me) and even now, years after my first outbreak, I still get at least one outbreak a month (this is down from constant outbreaks during my first year, but the "average" number of outbreaks per year is supposed to be 2-6, not 12-15). I've whined about it ad nauseam in the herpes thread, but I do understand how it is to feel like there's never a safe time to have sex. I'm just about always waiting for an outbreak, having one, or waiting for it to clear up. Lather, rinse, repeat. I'm single, but the feeling that I can't promise anyone a normal sex life, free of obvious risks, really weighs on me. It's hard. So yeah, I can relate.

Oh yeah, and Dandelion, try calling a dermatologist for the laser treatments, if you decide to go that route.
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bklynhermit
post Apr 26 2006, 05:51 PM
Post #17


Hardcore BUSTie
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Posts: 436
From: Brooklyn, NY


hah! dashed home from work, pulled out the HMO paperwork, and from everything i can tell, i'm perfectly covered, unless i were to have to have more frequent pap smears as a result (i'm only eligible for two freebies a year). i'm concerned about whether i need referral paperwork, but i can probably call my midwife to ask about it.

boo, planned parenthood NYC (yay PP other places, just boo NYC)
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dandelion
post Apr 26 2006, 01:24 PM
Post #18


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From: NYC


I sooo empathize bklynhermit. I work at a big nyc law firm, so you'd think I wouldn't have issues with insurance, and I just found out that starting Jan. 1, they changed their health plan somehow, so now my acid treatments for hpv skin bumps are considered outpatient surgery...which gives me a $150 copay. It is not even close to being surgery! But the bitch I spoke with from my insurance gave me the whole spiel about how the American Medical Association considers this surgery, bla bla. I'm like, i was never told my insurance plan changed so I kept going for treatments...and she was just like, that's between you and your employer. I hung up on her, I'm just so frustrated. Yeah like i'm going to discuss this with my employer. So basically I have three visits unpaid for right now, almost $500, and what do I do in the future? I make a good salary but who the hell has $150 to burn every few weeks? I can't stand it anymore. Why can't it just go away!?? I feel like it never will.

I have a question, has anyone out there tried laser surgery for removal? I'm considering doing that because i'm not about to keep paying $150 for acid treatments or freezing which don't work anyway, and my gyno was going to give me a referral to someone he knew who is actually an oncologist who does it, but I stormed out of the office after being harassed about my bill. So I have no idea what type of dr. would do that kind of laser surgery for this problem or who to call. Anyone have any ideas??

P_176 I have continuing probs with my sex life over this. Since I was diagnosed about a year ago, it is always an issue. Basically my dr says not to have sex when you have a wart, or after treatment for two weeks. So considering they keep recurring, I have pretty much been abstinent much of that time. My husband tries to be understanding but I just don't really think he gets it and of course we are both frustrated. Plus I pretty much don't receive oral sex anymore which I really can't blame him for but, it just sucks basically. Sometimes I think this is the worst STD (besides HIV of course) because it seems like for some people, nothing works for the bumps and they come and go all the time. At least with herpes there is valtrex.
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bklynhermit
post Apr 26 2006, 07:17 AM
Post #19


Hardcore BUSTie
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Posts: 436
From: Brooklyn, NY


oh, it is not a happy day dipping into this thread.

yesterday, i found out my last pap was abnormal, and now i have to have a biopsy. since i usually see a midwife, i've had to call around to find a gynecologist. my health insurance tends to be spotty (oh, the life of a freelancer), so planned parenthood was at the top of my list. i called them up this morning to see about scheduling a biopsy, and the receptionist i spoke with told me that my health plan (one of the huge HMOs) doesn't cover colposcopy/biopsy after an abnormal pap smear.

it's possible she was wrong -- HMOs are sprawling and I've already come accross things my specific plan covers that aren't normally covered. but it's also possible she's right. which amazes me.

HPV is the most common STI -- something like 90% of all sexually active people have it at one time or another. It's often asymptomatic. It leads to cervical cancer. so WHY ISN'T PROPER SCREENING FOR IT COVERED BY MY HEALTH INSURANCE?!

I mean, i'm assuming that my HMO would cover screenings for other cancers -- mammograms, colonoscopies, etc. so why not this? how effing outrageous!
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p_176
post Apr 25 2006, 05:38 PM
Post #1


Hardcore BUSTie
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Posts: 532
From: Baltimore


hi folks
i am new here....have had hpv for going on 3 years now...with constant outbreaks....was wondering how you view sex and relationships after learning you had hpv....i'm engaged but i really feel it's not fair for my fiance to be with me, since i frequently have outbreaks and various treatments....any advice? please?
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