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National Cervical Cancer Coalition


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 Post subject:
PostPosted: Wed Jan 28, 2009 8:35 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
Hey Callie,

Do you happen to know what the guidelines for Vitamin E are? I think you've posted them before, but now I can't find that thread.


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 Post subject:
PostPosted: Wed Jan 28, 2009 8:42 pm 

Joined: Wed Jan 28, 2009 6:21 pm
Posts: 2
I have had two LEEP procedures during the past two years because I was told I had cervical dysplasia. It was extremely uncomfortable. My pap tests are also very uncomfortable and I have been getting them about every four months for the past two years. I have passed out three times during my paps. I don't really understand why. My doctor said that it is probably because I get so nervous. I do get nervous, but it just feels so strange. It hurts when my doctor presses down on my ovaries. Is that normal? It also hurts when the spectrum thing goes in my vagina. My doctor uses a lot of lube, but it still feels so uncomfortable. I don't understand why because it doesn't hurt when I have sex.

I also think I am getting genital warts. At first I thought the two whitish spots on my bikini line were from tanning because I heard that your skin can turn white in areas if you tan a lot. However, I only just started tanning two weeks ago and probably only went six or seven times. I wish there were more accurate pictures of what warts look like. Every time I look online I find severe cases of warts. My mom is a nurse and she has looked online with me and told me that those pictures are not very accurate. I know that warts can be skin colored, flat, whitish, or cauliflower shaped, but I can only find pictures of cauliflower shaped warts. Does anyone have a good site to look at pictures? My mom is not being very helpful, but I guess I haven't really told her that I actually think I have warts. I did make an appointment with my gyno for Friday, but I want to be prepared for the bad news.

p.s. I really like this site! I feel better writing about my issues and reading about other peoples stories. I wish that no one has to go through with this life-altering experience.

p.p.s. what happens if I shave and have warts? Do I always have hair down there?


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 Post subject:
PostPosted: Thu Jan 29, 2009 12:06 am 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Audrey,

Are your paps still coming back abnormal after two LEEPs?

If you haven't already considered this, I would really recommend talking to your doctor about getting some anti-anxiety medication or tranquilizers to use right before your paps. I agree with your dr that all of the discomfort, at least with the paps, is most likely due to anxiety. Especially since it doesn't hurt during sex. Of course, you would need someone to drive you to the appointment, but I think it might be worth it.

I don't know about the whole ovaries thing. Last time my dr did that it was like somewhat uncomfortable pressure, but nothing major.

I would talk to you dr about getting some meds.......


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 Post subject:
PostPosted: Thu Jan 29, 2009 3:48 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
OFG,

I just got the call about ten minutes ago that I have moderate dysplasia (CIN II). My doctor wants me in for a LEEP as soon as possible, so I'm going to try to skip out of work next Friday afternoon and get it done.

My head is still spinning from this news -- I really thought it would be mild dysplasia that was reported back -- especially after the LGIL and then normal paps I got. I guess it's a good thing that I asked for another colpo just to be on the safe side -- the doctor's original plan was just to do another pap in four months.

Anyway, I'm still scared to death that the LEEP is somehow going to harm my cervix in the long run. Especially if what if this doesn't fix it and I have to have another???

Anyway, this blows.


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 Post subject:
PostPosted: Fri Jan 30, 2009 12:01 am 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Daphne,

I'm so sorry to hear that! If you have any misgivings at all about getting a LEEP, please get a second opinion. He may urge you to be seen right away, but CINII is not going to progress to cancer in the amount of time that it would take you to get a second opinion. Although, there are a lot of women out there who have had LEEPs and have gone on to have children. Also, I have heard that the success rate for these procedures is around 90% but I couldn't tell you if that is the initial success rate or if that high of a percent go on to never need a second procedure.

I'm so sorry you got that news today. You were right to trust your intuition to go through with another colpo. Keep us posted - we're here for you!!!!


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 Post subject:
PostPosted: Fri Jan 30, 2009 12:22 am 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
OFG,

Yeah, one of my friends urged me to get a second opinion too, but I think any doctor that hears I have CIN II is going to probably say to go the LEEP. My first doctor (that recommended cryo for mild dysplasia) also said that LEEP was the way to go for more severe stages, as have both GYNs I've seen. I'm just really nervous about how much they'll have to cut away.

I did do some reading tonight and it does appear that most of the time this is safe. I still don't understand how removing it right now will keep it from coming back -- I mean, if my body can't fight it off now, how is it going to in the future?

I also saw some info on how when they send the tissue obtained from the LEEP to the lab they can tell if they got it all -- how the heck does that work?

Anyway, I don't think I'm nervous about the actual procedure, just worried about the long-term effects.

If anyone has any stories about this, I'd love to hear them! Thank you everyone for the support.


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 Post subject:
PostPosted: Sat Jan 31, 2009 8:11 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Daphne,

I've wondered that myself. If the dysplasia is caused by a virus, how does removing the effected area solve anything, won't the HPV just make the dysplasia eventually come back? My dr talked to me about this a little and basically said that any therapies are basically treating a symptom (dysplasia), not the overall problem (HPV) and yes it will come back if your body cannot get rid of the actual virus. Of course, that little factoid was more than a little depressing to me. I have read about how HIV positive women who have HPV related cervical changes just basically have to come to terms with having treatment every so often because there is just no way that their body will every get rid of the HPV so they will be dealing with it for the rest of their lives. Let's first be thankful that we aren't in that situation.

So, I guess the thing to keep in our minds as we are going through all of this is that if we keep doing everything that our doctors tell us to, we will not get cervical cancer. I have faith that our bodies will eventually fight this crap off.


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 Post subject:
PostPosted: Sat Jan 31, 2009 10:00 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
Well, I've done a little more reading on the whole removal process, and it appears that since the virus is confined to the cervix area, these procedures can sometimes remove the majority of it and your body can handle the rest. Another point I read was that unlike colposcopies, the wound left from a LEEP signals your body that something wrong is going on down there and it will pay attention and start dealing with it. I also saw something about how there is so little blood flow to the cervix that it takes a long time for your immune system to find problems there and clear them.

However, I feel like I have to plan on never having sex again to keep this away! I mean, obviously my bf has it now (we haven't had sex since I was diagnosed in November) and I really feel like my body can't handle this strain that I have as it seemed to progress to CIN II much faster than my doctors predicted. Additionally, and I know this is TMI, my bf is uncircumsized and I've read that this segment of men harbors larger viral loads of hpv than other men. I honestly feel like I can't put myself in danger again.

Yes, I am quite assured that this will not progress to cancer, although I'm still wishing I was in the "mild dysplasia that might clear itself" club. I was actually starting to feel okay with that!!!


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 Post subject:
PostPosted: Sun Feb 01, 2009 1:36 am 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
That is a little comforting to know that treatment can potentially get you out of this situation all together. Maybe that is why they have such a relatively positive success rate.

I understand your frustration with the whole sex issue. It would be a lot easier if the guys could get tested to at least find out if they have cleared the virus yet. I know that there is a lot of speculation that couples can't ping pong the virus back and forth, but the doctors don't even know the basics about this virus, so how could they know that for sure?

I tried making my husband use condoms, especially when I was on indol-3-carbinol, but he isn't very into the rubbers, imagine that. At this point, I would be happy never to have sex again and that's just wrong. And sad. I'm only 32 and this should be my "prime" and instead I just feel like sex = disease, pain, biopsies, etc.

It's funny that you wish you were in the "wait and see" club because I wish I was in your shoes and actually potentially getting something resolved at this point. I've been in the waiting club for almost two years now and would like to move past this part of my life :) Of course, that might change with my next biopsy in a few weeks.......


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 Post subject:
PostPosted: Sun Feb 01, 2009 1:54 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
I know -- men not being able to be tested for this is almost the most frustrating part of this. If I could just know when my bf had this cleared from himself, I'd feel so much better. Also, the fact that condoms aren't 100% is really frustrating as well. I almost thought into looking into female condoms, but those look ridiculous to use! If I remember correctly, they look like miniature wind socks!!!

I know what you mean about not being able to equate sex with pleasure now. I feel the same way. All that part of my body reminds me of now is medical testing.

Another question for you -- you're on birth control, right? I have been for 12 years and I keep seeing studies about how long-term use increases your chances of dysplasia -- possibly because it depletes your folate levels. My doctor claims that there's not a risk of staying on it, but I'm tempted to stop taking it -- anything I can do to clear this, you know?

I think I liked being in the "wait and see" boat because 1) I had come to terms with having mild dysplasia and 2) it meant there was still a chance my body would fight this off on its own without medical intervention. Now, I'm disappointed and feel like I'm somehow not healthy enough to handle this....and it's such a letdown because I had been so positive these last few months that I was going to beat this. I honestly thought, "hey, something good is going to come out of this because I've stopped socially smoking and I'm eating even better than before."

Your next biopsy is in mid-March, right? I hope the hypnosis plan is shaping up for you! My LEEP will be THIS Friday. I'm not too scared, just like I said, disappointed that it's coming down to this. I'm traveling Monday through Thursday on business, so hopefully that will help me keep my mind off things. However, I know I'm going to miss this board for those few days!!!


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 Post subject:
PostPosted: Sun Feb 01, 2009 11:33 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
I've thought about going off birth control pills as well because I have been on them for soooooo long, like 15 years, and I too read about how being on bc pills can increase your chance of cervical cancer. But, from what I understand, it is a very very small increase in risk. And, for me, getting pregnant would be worse than dealing with what I'm already going through! So, I decided to stay on them until my husband gets his tubes tied in another year or so......

I know exactly how you feel about being positive and taking such great care of yourself that you really believe that you will be able to fight this off. I felt the same way in November after my last pap came back even worse than before and I had been trying SO hard to do all of the right things for six months. It was a major let down. I cried so hard and was so disappointed.

Ok, well, have fun traveling and please post again after your procedure on Friday. I'll be sending positive thoughts your way!!!


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 Post subject:
PostPosted: Sun Feb 01, 2009 11:53 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
In trying to figure out my game plan for the next six months or so, I think what I might do is see if they will do another HPV test on me at my 3-month check-up. If the virus is still present, I will consider getting off the b.c. in hopes that it might help -- although, I'm quite sure it wouldn't have an immediate enough effect. It just seems that almost everything I look at lately shows a correlation between dysplasia and b.c. use of more than ten years. Although, I can't imagine going back to having cramps and all that fun stuff I used to experience when I was 19.

Yeah, I'm still a wreck after finding out what I was doing didn't help. I guess all I can do now is keep at it, although my stress levels are sky high at the moment.

Oh, I'm sure I'll be back on here Thursday night when I get home. I will definitely post as soon as possible after the LEEP. Thanks for the good vibes!


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 Post subject:
PostPosted: Mon Feb 02, 2009 4:32 pm 

Joined: Mon Nov 03, 2008 9:23 pm
Posts: 37
Daphne,

Sorry to hear you have to go through with another leep. I've never had one but I've never read they are horribly painful either. I think you're numbed down there :)
I've officially started a club. No sex for the rest of my life club. I think it might be an exclusive club. My husband wants no membership at all. Poor guy.
OFG, how do you think those supplements are working? I mean do you feel any different? Even if its just a lil more positive about the whole thing?
I never understood the whole removing part of an infected cervix to rid the body of the virus. I was hoping it worked. Not in my case.
I'm guessing after a procedure they do want you back sooner than later to check things out?
I'm honestly okay at this point with going every 3 months. I have kind of resigned myself to this routine. God, my insurance company must love me!
Good luck girls!


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 Post subject:
PostPosted: Mon Feb 02, 2009 6:11 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
Hey lifewasgreat,

Yeah, I'm not too worried about the LEEP being painful; I think I can handle it. I'm just worried about how deep they'll have to go.

The figures I saw online showed detection of the virus decreasing as the months went on after LEEP or cryo. LEEP was a tad more effective, but if I remember correctly, they could still detect the virus 40% of the time three months after LEEP, but after that it declined to around 10% after a year (at least I think that's what I saw but I don't have time to look it up right now).

I'm quite sure the standard time between a LEEP and the next checkup is three months -- I guess I'll find out when I see my doctor on Friday.

Let me know if any of you have any questions you want me to ask my GYN. I'm currently in the process of compiling a list.

I'll be back on the boards Thursday night!


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 Post subject:
PostPosted: Thu Feb 05, 2009 11:18 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
Alright, the big day is tomorrow. I will report back as to how it goes.


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