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I GET SO SICK

Fifi80
0 Recommendations

I GET SO SICK of this site with all the different scenarios and answers. I came looking for hope because I did not ever have any and I come here and it seems like no hope ever. The reason I say this is because some responses get too smart. I want realistic answers. If you are happy with your life, there is no need to chat on here telling someone down that. If there is no cure, then why even try to make someone better. The crap is with you for the rest of your stinking life!!!!!!!!!! To make matters worse, you do not even know what the hell your future is like.

Good bi I am out of here!!!!!!!!!!!!!!!!

Explore topics in this discussion:

Cancer Surgery Hysterectomy Confusion Pregnancy Pancreatic cancer Cervical cancer Pain HPV Infertility Stress

18 replies

marsha123

My response to this post: No one site is the right fit for everyone. On here, we try to be realistic, and at times it may come across as negativity. We try hard not to be negative. The writer also complains about the "happy" people. Share your happiness any time. Hopefully, it will be contagious! Also she complains about some responses being "too smart". Educate yourself about the virus, and you too will become smart...it won't hurt you but it will help you. We win some and we lose some, but this is a wonderful site, and I'm SURE we win over many more than we lose. Love you all, M

ShaundraNCCC-AZ

Fifi80,
I'd like to talk with you more about HPV and your situation. It sounds like you are quite frustrated with the postings on the board and that they are all different. Just like every person is different one from another, everyone's health is unique to their bodies. I'm sorry you are so angry that you don't seem to be getting the answers that you want to hear. I would like to help you with that. Please email me at shall@nccc-online.org so that I can be of further assistance to you and get you specific answers to specific questions you may have.
Shaundra

DebWill02

Fifi180,

I am sorry that you feel such negativity towards this site. I agree with Marsha that not all sites are right for everyone. For me personally, this site has given me hope, knowledge, and friendships! There are so many things I would have changed about my lifestyle if I had access to this site prior to my diagnosis of AIS. I think so many of us that post on this site are in the throes of biopsies/path reports, etc.. experience a range of emotions and don't really have anywhere else to share our frustrations and fears. Sometimes it feels like there is more bad news than good. But.... I think if you need something from this site, then it is best to be up front and start a discussion on a positive note. I can't tell you how ecstatic I was when I received negative margins on my ckc and I couldn't wait to share my news on this site! Most people wouldn't even have a clue about what that meant to me.
The people that belong to this site truly care about you, me, and all the other members. I wish the best for you and will send happy thoughts/prayers for you.

Best wishes....

Deb

astrocat88

It is my understanding that HPV is VERY weird.

Like, you really can overcome/manage/monitor it.

It is not like pancreatic cancer which is RIP.

I'm not totally convinced of the stats, but up to 80% of the population have HPVs during their lifetime. Some people overcome it, obviously, but 10% don't (women are subjected to feminine and other mucous cancers, and men only to anal, throat, etc and HPV 16 an 18 evidently really love the cervix area).

Curiously, I am 43,5 yrs. I was diagnosed with HPV CIN III in April and it was removed. But that was after going through the following in a period of 12 months: the death of my mother and best friend, the death of my only grandparent (the only one I ever knew and who was very very dear to me), a divorce to a man I care greatly about but simply couldn't live with, major job pressures, an IVF attempt that failed due to "old ovaries", and about to do a DE process in the US ... all of this living in a foreign country (I'm from the US and live in Europe).

I had never, in all of my entire life been under such stress and such sadness for such an extended period of time, and ¡Voila! I have HPV CIN III (only 10 months after my last pap). I'm actually not surprised that, given that (unknowingly) I had it from at least 12 years ago, that it was able to make its appearance! I was so tired, so depleted, so ... but the good news is that it also appears/seems that you can fight it off. At least some people can. It is a virus. It is not like weird reprogramming of your cells for no apparent reason. So, that means, HPV folks have hope, a chance.

It is great that they have a vaccination for young women. But, what about young men? They also spread HPV!!!

What about a cure for HPV for older women and older men?

I know AIDS kills many people every year, but HPV and the fear of HPV is also devastating for WOMEN. Condoms do NOT prevent a woman from contracting HPV. Only abstinence. This is not a solution by any means!

HPV is REAL. It is horrifying and for those of us who have it and can't shrug it, what?

My gyn x 2 ( I had two for the HPV removal) think it is related to having taken the hormone injections for the IVF. They believe stress and hormones set it on fire (like giving it fertilizer) and they prohibited me from going through with the DE (meaning I would have to take mega-hormones again). This deserves studies as IVF treatments are on the rise and many women may be putting themselves at risk, unknowingly, to a bloom in a doormat HPVirus that they are hosting ... Look on internet at the number of pregnant women who early on in their pregnancy find out that they have cervical cancer or cervical HPV!!!

This HPV thing is growing and one day it will BURST! For one thing, we need to galvanize all "famous" people that have it and get them to create a PUBLIC MESSAGE and become active and also get rid of the "taboo" of HPV.

HPV is just not a woman thing. HPV affects the cervix, yes. But in women and men alike, it affects the anus, throat, nose, all mucus areas. My exhusband just went through throat cancer. He NEVER smoked (perfect weight, gym, light eater, non-smoker, non-drinker, etc). They told him it was an HPV- Smoker type cancer. He went through chemo and radio. He had the cancer 1 year before I found out I had HPV. We were already separated so I mentioned the HPV - mucous - throat cancer and he added that his doctors thought that it was also a type of HPV cancer ... he was only 42! He is now in remission.

This, as I said at the on start, is WEIRD, stuff. It definitely deserves research and solutions.

I am tired of reading all of these posts where no one coincides about anything, gyns are only concerned with the cervix but don't mention the anus and the mucous, etc. This absolutely can not be! There must be clear protocol. You have HPV of the CERVIX and must have your anus and throat and nose, etc examined every X years, period! We all know that there is a relationship, why doesn't the gyn tell you to go see an anal and throat specialist?!!!! Why isn't there a general HPV specialist who tells you to do this and that? With 10% of the US populations supposedly with HPV, then 39 million people suffer HPV. That is totally significant!

Any comments?

This is like TB,etc. Until there is a solution, we suffer and some of us die! This is horrible, HORRIBLE! We can go to the moon, study Jupiter, attack countries with Billions of dollars, but we can't solve this? Come on! It is because no one has decided to go about doing it!

astrocat88

I'll add one more comment, I imagine like me, anyone with HPV 16 and 18 would pay a heck of a lot of money to be rid of it! Lets say it costs an average of 3,500USD to get rid of it 100%. That times 39.000.000 people = well, the total revenues does not even show up on my calculator!!!
Pharmaceutical companies are "companies" i.e. business, moved by MONEY. Very well. I have an MBA. So I can empathize. This is a major money project! I sincerely hope someone out there has done the numbers and is working on a solution!

flowershoplady

astrocat, there's another discussion thread about the therapeutic vaccines that are being worked on....have you taken a look at some of that info?

astrocat88

Hi Fifo,

I am 43,5. I have not had a HPV vaccination. I do not know much of anything and I am as scared as you but I awaken every morning, kiss my hubby, have my coffee go to work ... read my books ( I love literature, always a book-worm) and go to sleep.

I am an ordinary woman.

About "put down". I am not negative. There is no progress here. I am not a leader. I am asking for someone, to step forward, inspired, to go an seek help for us, you and me and everyone else. I can't. I live in Europe, with socialized medicine and socialized companies. There is no logic. Socialism.

There is no cure as of yet. Admit it! I don't mean to jab, but, well, you do not look 16 in your photo ...so i do not think you have had the vacu either. You and me in the same boat. Do we paddle together, or are you going to again say that I am "negative".

We all need concerted help here to get a cure for this maldito virus! Por Dios! ¡Bendita!

I do not feel that I have been negative in a bad sense; I have been negative in that you, me and everyone else, and 39 million Americans are going around in circles.

I am about to go to another country for DE+ surrogate to have a baby! I do not want to die! This jodido HPV absolutely F- my DE cycle! And I want to have a darling baby after 8 years trying to firgure out why I can't! I don't know if you have children but HPV is quite a big elephant in the road to having a child. And if you do have kids, you can't imagine how hard it is, and how costly to find out why you can't. HPV isn't the cause, it is only the cherry on the whole cake.

I'm not negative. This disease stinks and affects 10% of the US population. This is a serious matter. I am not negative. I just want more government help? Perhaps? More help in general? There isn't much and there is nothing to do here in Europe as medicine is socialized and there is no such thing as "galvanizing" so I leave it to my very strong and valiant American compatriots!

Judgemental! Read my site again! I am not! This is a STD! But in 43.5 years, I've had 5. Most of my girlfriends have had 20+ and can't remember how many and do not have HPV and have kids to boot. How fair is that. I am not judgmental and certainly not in the position to be so.

I am at almost 0 to have cancer. Do you even know what CIN III is? It is opening the door and stepping into cancer. Get your facts straight before you "yell" at me! I only had my last pap 10 months ago! A little more and I am with chemo!

What is the matter with you? Read my post again! My ex-husband almost died from HPV! And I am shaking in my boots to see if my CIN III has reappeared in November.

I'm on your side. Calm down. I do not understand what what so negative about my comment. Please let me know so that I can most certainly clarify. We are ALL on the same side/team.

astrocat88

Hi, thank you for responding. What sort of therapeutic vacines?

Thanks!

astrocat88

Hopeandprayers - I am back again because I really do not understand why you feel I am so negative.

I am suffering too with HPV iii, no possibility at IVF, age limit and 2nd check up in november .... Is this site only for people with full-blown cancer, or what? I am still wondering what I said that so much offended you?

Maybe I don't seem religious (given your ID). Christian. Well, I am not. I am just religious in that the trees have leaves, there are beautiful sunsets, the green of summer grass ... that is my religion. God is not fair as humans understand fairness.

It is unfortunate that you have called me immature etc. This site is all yours now Sister as I have much better things to do in the time I have left on earth be it 1 year or 50. Have at it and spread/ share your vast wisdom on HPV. The cure ... ? I guess that will come from someone else .. but have at sharing your "experience" what ever it is!

I'm off this Support Group FOREVER!

chamomile

Aristocrat, I don't think Hopeandprayers was calling you immature. I think that was directed to the author of the post.

astrocat88

Thanks Chamomile. You are absolutely right that I WAS IN THE WRONG and Hope&Prayers has already, kindly and gently, written to me to say as much.

I am very sensitive to all of this as people immediately think STD - bad girl - sin! and I just didn't see the name of the person this note was addressed to given that it immediately followed mine (lame excuse but that it is!).

I am really amiss. Sorry to all!

Will take a break and come back when I am calmer. Have check up set up in November after first col. and well, but no excuse.

As Chamomile has pointed out, this has been my mistake so, please accept my apologies Hope&Prayer and to all on this blog. I was a little "muddled" and appreciate your coming back with kind and soothing words.

Nevertheless ;)- I am concerned about the fact that there is not hope for a vaccine for us ladies right now, but I'll come back to that point later when I have had a breath or two.

Again, my apologies to Hope & Prayers, and the confusion it may have caused to everyone following this blog. Ew! I am embarrassed!

Well, ladies! Carry on! ;)

corellin

Hugs to you, Fifi. I know it doesn't seem like it right now, but it will get better. Sometimes when we're in a fear state, everything we read hits a button and sets off more fear or more feelings of hopelessness. When that's happening, sometimes I think it's good to limit your inputs, because too much can be overwhelming. This is a great site -- but I think not to read in the middle of the night, because you will notice the posts the most that just feed your fears.

I completely understand where you're coming from, because I was in that state for months. It's an awful place to be. Again, hugs to you, Fifi, and it will get better because, no matter what happens, as time goes by you will grow stronger and more knowledgeable and more able to handle anything that comes.

Best wishes to you...

flowershoplady

astrocat, here's the discussion thread i referred to....go to the second page of postings, the more recent postings, and you'll see a woman has posted on the status of several therapeutic vaccines:
http://www.inspire.com/groups/national-cervical-cancer-coalition/discussion /excerpt-from-research-paper-vaccinating-older-women/

butterflyangelia

ladies, this was the best thing i did when i found out i had hpv, you all have helped me tremendously. and because we all know what eachother has been through i know there is so much support. we may not hear all the things we want to but one main thing we do know is that we are not alone. and if ever, we have many others to talk to who know every feeling, thought and worry we are feeling, i thank everyone of you, i read every day on this website. god bless and never give up hope! if we dont have hope, we dont have anything!!!! i had hpv on and off for 5 years, did the freezing, a cold knife cone and it was agressive, monday i had a hysterectomy. doing ok. waiting to see the dr. next week. take care..

Fifi80

Butterflyangelia,

That is awful, why did your doctor order a hysterctomy. You don't need that: (
Why? Why? Why?
I worked in gynecology but did not except the job because I want to continue my education really.

I hope you are happy say yes or I will cry. I don't like to hear that and then you are not happy. That only makes me upset with the doctor.

Gosh, let me stop. I get heated easily. I think if HPV and I were to physically meet with one another in the ring I would mingle, saw kick, punch, bite, tear, swing, throw, and destroy the virus. That is how I feel about HPV, butterflyangelia.

Good night

Fifi80

corellin!

Hi, I am back I thought I would not, but I went away to clear the steam. I guess I am only mad because the spread of HPV will not stop.

I was away thinking. I thought to myself, "Who am I mad at?" I continued, "Is it the virgin girl I met? Is it the virgin boy I met? Is it the guy with all types of HPV? Is it the girl with all types?" Ug! The list can go on and on.

I finally found out that I do not like HPV hurting anyone period. It seems like you hear one thing from someone and it makes you defensive to what the post says. In a way, it is more like a family member telling you someone hurt them. That makes you mad and want revenge.

You understand what I am saying right? Anyhow I want to tell you good news for a change. I will send it to you. I do not mind who reads it either.

corellin

Hi Fifi -- I understand what you're saying. I feel the same way. It hurts sometimes to read all the posts of women who are hurting because of HPV, and any caring person would feel angry and just want it to stop and want everyone's pain to go away. I'm so glad you're feeling better and finding some peace. It takes awhile, but eventually we work through our feelings -- with some good days and some bad days, but the good days happening more and more often as time goes along. And, there's a lot of personal growth along the way too where you learn more about yourself and how to be happy. And it also helps to find others along the way who understand what you're going through and can be supportive. I'm glad you're feeling better, Fifi. Thanks for writing.

butterflyangelia

hello there fifi80 , because the hpv wasnt going away, it was progressing fast, i was having alot of pain in my ovaries also, anyhow, it is done. surgery went well, still have my ovaries , there was alot of scar tissue from my c- section he trimmed up. also my periods were never normal, i had to do2 years infertility to get pregnant. and i dont plan on anymore children, or didnt lol. i have a 10 year old son who has cp. a handful! and now the dr. says, everything is perfect, it is gone so far!. so i am happy. i was headed straight for cancer! and it was progressing way too fast!

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