Rant...

Hi all...

Sorry, I am about to rant...but I just need to!
I was diagnosed on 9/21/09 with CIN III and after the colopscopy/diagnosis I will be having a LEEP done in the OR on 10/28.

Anyway...I am getting SO frustrated with not only the medical community's downplaying of this virus, but also of friends and family! Logically, I understand that friends and family are downplaying my results to help me feel better, keep me optimistic about the LEEP and its results, etc...it's what ANYONE (including myself) would do or so to someone going through this experience. But, for some reason..I am so sick of hearing it! I know that sounds HORRIBLE...but I just think that emotionally, I am all over the place right now. I am trying to stay optimistic, but there is also a scary reality of what this could have turned into had I NOT gone for my annual.

I was 4 months late for my annual (I had seen the gyno so many times this year bc of yeast infections..I just wanted to wait awhile longer before getting into the stirrups again! The only reason I went back exactly when I did was to get more of my birth control...I am always good with my annual, but had figured that since i saw my gyno so many times this year, I was fine for awhile longer...).

Anyhow...why does everyone downplay this virus? I swear...either they don't know it's significance (true) or they are afraid to break the silence....

I want people to understand the serious effects this virus can have on the cervix and surrounding structures...I am just frustrated of hearing "it's no big deal...everyone goes through this" YES...but let me tell you, besides the stories and experiences shared on this website..everyone else's experiences that I have spoken to have stopped at colopscopys (and wait...no HPV diagnosis).

I am so thankful for all of you who continuously share and lend an ear. It's so much easier to have someone who knows that even though this is so common, that it is still not OK and very very scary....no matter how positive you are.

I know I sound very insensitive about friends and family who are trying to be supportive. I think this is just a small phase. Logically, I know they are wonderful and really there for me. Emotionally, I am just aggravated. Hey, this all could change next week..the feelings I am going through, but today it is what it is. I know many of you will understand this emotional rollercoaster.

Honestly, if I hear one more time about how keeping it silent and just continuing to have sex without sharing the knowledge of what you have (from the medical community!), I am going to scream. I realize why they say that...but I just want the spread of this to stop (as we all do).

Fortunately, I am with the man I plan on marrying...but I don't know what I would do with the moral issue I posed above if I wasn't with my lifelong partner.

I'm sorry. I do not mean to offend ANYONE by any means. This is my rant of the week and the emotion of the day....

Thanks for reading....just needed to get it out there.

Kristi

By ErinB248
Posted October 18, 2009 at 10:59 am
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Kristi,

I am right there with you. My family and friends have been very supportive and accepting, but in their support, they are also downplaying the issue. I was diagnosed with carcinoma in situ and my family keeps saying how relieved they are that the LEEP removed it all, but they don't seem to understand that I am dealing with the fact that I was diagnosed with cancer and it scares the heck out me. There is always they possibility that the doctors didn't get it all or it will come back. While I am grateful, I am also terrified. It is hard to vent all this stuff to family and friends that want to be so supportive but end up minimizing the situation. I think we do need to break the silence... HPV is so common and it is a huge problem, but not something to be ashamed of. Keep on ranting whenever you need to!

Erin

By phchic
Posted October 18, 2009 at 12:35 pm
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I agree. I realize how common it is, but that doesn't make it any easier to deal with. After just getting diagnosed this week, I'm not sure if I'm glad my doctor is thorough or not. I'd almost rather have dealt with the abnormalities without having known about the HPV part.

Yes, maybe up to 80% of sexually active adults get it at some point in their lives, but I'm the only person I know of IRL that has gotten an actual diagnosis (one other friend had the colposcopy/ biopsy, but didn't test positive for HPV- not sure if they ran the test or not). This "it's ok, everybody has it" isn't making me feel much better.

I have also been seriously considering leaving my long-term boyfriend/ father of my 1 1/2 year old child, and now this throws one more wrench my way. It's bad enough trying to date as a single mom of a young child, but a single mom of a young child with a cancer causing STD?!? Ugh.

I wish I had some words of optimism to share with you, but I'm pretty much as fed up as you are right now. This thing is scary and the statistics are pretty much unbelievable once you start researching it. Just know that you have virtual support! I'm so glad to have found this site.

-Erin

By kalalor
Posted October 18, 2009 at 12:36 pm
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Thanks, Erin. I just read this aloud to my boyfriend (who is wonderful and doesn't minimize the situation, but just is and gives lots of hugs, kisses, and smiles...) but it was so nice to share with him how someone else feels exactly as I do! Thanks, Erin! Please keep in touch. I'm glad that things are looking up for you!!!

By kalalor
Posted October 18, 2009 at 12:47 pm
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Hey Erin (2)...I feel your struggle. That would be really difficult. However, if you are not happy with your current boyfriend either way, staying with him is not good for your health! I think you have to consider (HPV aside) that you might not be in a good situation with your boyfriend. You deserve to be happy no matter what you are going through. I'm sure that doesn't make you feel better, but i hope you find support in just knowing that there are caring ears out there to support you! All the best!!!

Kristi

By flowershoplady
Posted October 18, 2009 at 12:53 pm
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rant away.....you'll see that there are quite a few of us on this message board who are not 'ok' with the health folks in power saying that this is all treatable and the virus is extremently common....the key to changing this is to prevent exposure and transmission....via vaccination, better detection, more education in transmission prevention.

By sparkles1234
Posted October 18, 2009 at 3:11 pm
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Kalalor~

Never feel as though you have to apologize for putting your feelings out on this site. 'Ranting' to people on this site can be quite comforting. I am pretty sure it's safe to say that everyone has had these moments of anger, sadness, etc...IT'S NORMAL!!!

Definitely know what you mean when you said you feel like it's an emotional rollercoaster. One day you are ready to conquer this virus, the next you feel sad about what may be in store for you next.

Don't even get me started on some of the GYNs/doctors that are out there. It's like they want everyone to keep spreading HPV...almost like they want to keep on making a profit on those that are diagnosed with this condition, so they tell you, "Oh, no big deal!" Well, if it means that one less person will be saved the misery and worry that we have to deal with, then I'd say it is a big deal.

Keep on ranting and hopefully one day there will be much more awareness on the seriousness of this condition.

xoxo

By BeccaSL
Posted October 18, 2009 at 5:06 pm
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Flowershoplady
I totally agree with you! There should be more education about HPV! Not only to stop the spread of the virus but to better the stigma of HPV. I just don't know what to do.
Kristi
It is soo scary I mean I'll be perfectly fine one minute and the next just completely upset because of how serious it is. It's not just like having a cold and even when you get it removed you have to always wonder if everything is still okay. Keep on writing ... Its so nice to hear others talk about this because even though I have a lot of support from my husband, his family, our church- I still feel that I am alone in this because I'm the one with the pre-cancerous cells and HPV- until I get on here and read everyone's stories.

By kalalor
Posted October 18, 2009 at 8:20 pm
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It is so wonderful to have you all read my rant and respond with such caring words..and words that show a true understanding! It makes me feel like I'm NOT overreacting about just some precancerous cells in my cervix...it is serious!

By flowershoplady
Posted October 18, 2009 at 8:29 pm
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this can all be scary, particularly because we never expect it.....but keep in mind that 'pre-cancerous' cells really isn't an accurate terminology for dysplasia because it won't necessarily progress to cancer. it probably will not progress. that said, obviously, most women will treat to remove the abnormal tissue, and/or take steps to help their body clear the active hpv infection and/or dysplasia.

By Dejah1987
Posted October 18, 2009 at 9:48 pm
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FSL..I have a question for you.
You said that "precancerous" isnt a good term to use for dysplasia because it will not necessarily turn to cancer....Is this so even if I was diagnosed with CIN 3.
I'd be lying if I said I wasn't absolutely terrified to have my LEEP this coming Wednesday and hear the results. I have gotten regular paps for 4 years now. I have been on top of it and out of nowhere I was told that the results of my colpo/biopsy came back CIN 3.
Fortunately I've worked in the ob/gyn field for the past 3 years and have built great friendships with the docs. A Dr. that I adore and trust 100% told me that even with CIN 3, studies show that it takes an average of 8-12 years to advance to invasive cancer. However, according to what I've read here, that's not neccesarily true!!

I feel totally in the dark as I can't seem to get my hands around this!

Im 22 y/o, I never thought in a million yrs that cervical cancer would have such an impact on me :(

By ErinB248
Posted October 18, 2009 at 10:16 pm
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Dejah,
They use the term pre-cancerous because it has the potential to turn into cancer. But it doesn't mean that it will turn into cancer. In some people, CIN-3 will turn into cancer, and in others, it won't. But, because it has the potential to turn into cancer, they do LEEP or cryo to get those abnormal cells out of there before they have the chance to turn cancerous. Good luck on Wednesday! Please let us know how everything goes.

Erin

By Dejah1987
Posted October 18, 2009 at 10:20 pm
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Ok, I see...thanx Erin for clarifying! You guys will be the first to know of my progress. I am sooo glad I found this site and such great support.

Pray for me!!!

By hopefullady
Posted October 22, 2009 at 12:21 pm
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Hello Kristi,

Like you I was diagnosed with CIN3 and I recently had a LEEP on October 14th.

It all started because I wanted to get back on birth control. I was late 3 months for my yearly and then I get a call saying that my pap read cannot exclude high grade squamous intraepithelial lesion (ASC-H)

Then begins my roller coaster.

During my "tumultuous" time my boyfriend of 2.5 years decides he no longer wants to be with me. I have told him about my condition and how serious it is, but he has a cavalier attitude towards it. I could not believe he did not care that I had an STD that can cause cancer and that mine was one step closer to cancer. It hurt and pissed me off. I wanted to strangle him! I told him that more than likely he has it too. Still no response and still the I don't care attitude.

I get depressed at times about my uncaring ex-boyfriend and the thought that he was probably the one that gave it to me or he knew about it beforehand and didn't tell me. What kills me the most is that he may give it to another girl. It is not fair or right.

In regards to my ex-boyfriend, I try my best not to think about him. I told one of my best friends that I would not jeopardize my happiness, health and well being worrying or thinking about him. He has given me too much stress and it is not worth it.

Yeah, we are told it is not big deal, but until it affects them (doctors, people who think it is not a big deal) then I'm pretty sure it will be a different story.

Like FSL said, we need to prevent exposure and transmission.

Best wishes to you Kristi!

By corellin
Posted October 22, 2009 at 1:12 pm
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hopefullady -- I had a really wonderful and supportive boyfriend at the time of my LEEP, but despite the fact that he is a caring and kind person, HE STILL DIDN'T GET IT!!!! His attitude toward HPV was "what are the odds." There's absolutely no way that we can counter the messages put out by the medical profession, the CDC and others. My current boyfriend's doctor told him if he wasn't already too involved he should leave me because I was a nutcase in my over-concern about HPV. Needless to say, it has been almost impossible to negotiate "safe sex" since then. Every concern I've raised essentially makes him look at me with raised eyebrows as if I'm a hypocondriac (sp?).

I think that unless it happens to you personally, it's impossible for people to get it. I wonder if it's that way with everything or just with HPV -- because there are so many messages that downplay the impact/risk.

By kalalor
Posted October 22, 2009 at 2:50 pm
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Hey Hopefullady...

I'm sorry to hear about what you've been going through. The additional stress related to the ex-boyfriend is so unfortunate. I know it's easier to say, "he's not worth it" and continue, but there is always that tagging little part of you that can't totally let it go. For your health's sake, I hope you can!!! Because you're right...he's not worth it!!! All the best!

Corellin,
That was really rude of your current boyfriend's doctor!!! I wish your boyfriend hadn't shared the piece of news with you either! God, makes me so angry!!! Well, I'm glad he did the right thing..I just wish he wouldn't look at you like you were a hypocondriac...maybe you can talk to him about you don't appreciate being called that. Remember, those men are such BABIES when they have a COLD! Ha.

Goodluck with the men, ladies!!! And of course, best wishes with everything else! HUGS!

Kristi

By ErinB248
Posted October 22, 2009 at 6:01 pm
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Hopefullady,

I promise I am working on getting the message out there to docs that it IS a big deal! I am fortunate to be at a med school where I can meet with doctors and future doctors who will listen to what I have to say (from a patient's perspective). Luckily, the majority of doctors handle the topic pretty well, but the ones that don't definitely make the whole experience VERY frustrating. I am only one person, but I will do my very best to be heard by as many people as possible so that the horror stories I read on here won't keep happening.

As for that ex-boyfriend, you deserve so much better than that. Never settle for less than you deserve... a compassionate, caring, loving, and honest man!

Erin

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