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    Old 01-26-2007, 01:15 PM   #1
    fairydust7
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    really freaked out

    Hi Everyone,

    I've been trying to do research on my own and it all has really just made me even more scared. I found this message board and I felt maybe talking to others would be way better since I don't have anyone to talk to that can relate.

    Back in 2002 I had an abnormal pap and then a colposcopy. It was low grade dysplasia. 6 months later they did another colpo, same results. Well to sort of preface this, I have a very rare genetic skin dysplasia. So being very naive I was like oh well maybe its just my dysplasia and my gyn doctor was like well i don't know, etc. to keep this short, I basically stopped going in for my yearly exams and the colpo's. Yes I have been beating myself up over this a lot because it was insanely stupid of me. I realize it now and thats why I went in. My pap smear came back high grade SIL and I went in for a colposcopy yesterday and apparently I have HPV and I also had it 5 years ago on my last colposcopy. No one ever told me that! I had absolutely no idea at all. I'm sure you can imagine how much I've been beating myself up, so please don't berate me for being so negligent of my reproductive health.

    I asked the doctor how bad it looked because the second he looked at my cervix he said yep you have an infection. he told me using a rating scale of 0-5 with 5 being the worst, a 3 or maybe a 4. He also told me that virsues wax and wane, so it might just be at its peak right now and not normally this bad. He told me once the biopsies come back then he will see how he can treat me. He also mentioned something about it being fairly high up or something and wide spread during the colposcopy. I asked him how it'd be treated and he told me the different methods of removal (cutting, freezing or lasering), but what if its too deep for that? is that possible? or if its higher up than they can reach?

    I'm really really scared that it could be cancerous. He has never said antyhing like that, but I can't help but be scared.

    Should I be as scared as I am?

    I swear I will never neglect my health like this again. I do take a daily multi-vitamin and I have started taking vitamin C 2 days ago and I do eat healthy, so i'm hoping that will be in my favor at least.

     
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    Old 01-27-2007, 10:53 PM   #2
    Gloria72
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    Re: really freaked out

    Hi, Try not to worry so much. You are doing the right thing now. Hopefuly you can have all the bad cells removed. I wouldn't mess with cryofreeze. My advice would be to have a Leep first. Go from there. The vitamins are a good idea. Take folic acid 1mg too. Eat as much green and yellow vegetables and carrots as you can. Exercise too. It can't hurt.

    You are not alone I and many of us are going through the same thing.
    God bless
    Glo

     
    Old 01-29-2007, 05:53 AM   #3
    fairydust7
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    Re: really freaked out

    thanks for replying! Is cryo freeze not as effective as the leep? I'm pretty sure the doctors will do something (I'd be shocked if they don't), I'm just wondering what will be done. When they remove the tissue, are people normally awake or under anesthesia? I had read that they just give you a local, but a lady i talked to that had the leep procedure done said that she was under general anesthesia. I'm hoping that I'm completely out.

    Thanks so much for the advice! I truly appreciate it and it feels better knowing others are going through this, even though I wish none of us were. I will be picking up a bottle of folic acid today at the store too. I picked up a bottle of vitamin E yesterday because I read somewhere that it can help too? I do eat a lot of vegetables, probably not the daily recommended amount, but starting yesterday I changed that, my diet is now mainly vegetables and just some protein, dairy and whole grains. I had stopped working out, but I am restarting again today. Nothing too hard just some light cardio.

    Thanks again for responding and easing my fears a little! I hope whats going on with you is getting better. I am glad I found this place!

     
    Old 01-29-2007, 09:26 PM   #4
    Gloria72
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    Re: really freaked out

    I had the cryofreeze first and it was not effective. I had CIN I. After the cryo 4 monthes later I had CIN II. It had time to get worse. I would go more agressive if I could have turned back time. I just had my 4 month after Leep last month. It came back abnormal mild Stage I. I have to wait for April to see if it clears. If not and still mild, I wait another 4 monthes. The waiting is so hard for me.

    The Leep was uncomfortable unfortunatly. It was long and I had hard cramping. After, I recoved fast. I was back working in two days. I do have a job where I sit a lot. If you can't rest you should stay home longer.

    Also I was awake through it. But you don't feel pain really, just lots of presure. Like bad cramps. I was so happy to get out of there after it was done. Your Dr will probably give you pain pills if you need them. Or just take the advil or something like that. Remember to take extra special care of yourself. No lifting, eat good, rest and vitamins.


    I'll keep you in my prayers.
    Glo

     
    Old 01-30-2007, 07:45 AM   #5
    fairydust7
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    Re: really freaked out

    Thankfully I don't work, so I don't have to worry about going back to work afterwards. I also have a rare genetic skin dysplasia that makes me heal very very slowly, so I'm continually dealing with some sort of health issue unfortunately. Which is partly why I did not understand 5yrs ago when my doctor was like oh yeah you have a mild dysplasia, don't worry, etc. I naively assumed it must just be my dysplasia I do actually have and its so rare there's only 9 people in the US, UK and CAN with it and i figured they didn't know how to tell the difference. Never again will I naively assume anything lol.

    I can't take most pain medications (allergic, lucky me) so most likely it'll be advil or something if they keep me awake.

    I'm really sorry it keeps coming back, I hope on your next exam in April it will finally be gone. i can only imagine hwo hard the waiting is, I can't stand waiting 3 weeks for my results.

     
    Old 01-30-2007, 09:07 PM   #6
    sharon7270
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    Re: really freaked out

    NO cryo girls...I am going through such an ordeal right now after a cone. The cryo gives unclear results...enough to have killed one of my co-worker's daughters at the tender age of 32. They did the first one and it came back saying that the margins were unclear. Her doctor told her this was typical with the cryo, but they would do another just to be sure. That one also came back with unclear margins, but they were pretty confident that they had gotten it all. She got pregnant, had her second baby and went back for all of her visits. They said her abnormal paps were due to the fact that she had just given birth, so she didn't go back again until her yearly. At that point she was stage 4. She had blamed her tiredness and weight loss on the fact that she had two very young babies and her nausea and irregular periods on motherhood as well. She died three months later. We have to be our own advocates...our own doctors. Just do not do the freezing...tell them you prefer a LEEP. At where they are staging you, this will absolutely tell them if there is anything else.

     
    Old 01-31-2007, 04:28 AM   #7
    fairydust7
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    Re: really freaked out

    I am really sorry for your co-workers loss.

    I will definitely not allow a cryo-freeze then. I don't know what stage I am at, I assume that will come back with my biopsy?

     
    Old 01-31-2007, 09:31 AM   #8
    karen32
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    Re: really freaked out

    fairydust,

    You can request a copy of your pap smear report, and also when the biopsy report comes in you can request a copy of that too. I really believe in getting copies of all my reports. I find it helpful if I am researching to have the correct terminology. I had a colpo/ecc done and was never called with the results. I contacted my doc's office daily two weeks after the procedure. The secretary told me everything came back fine and when I asked, she said there were no recommendations for follow up. I went in and requested copies of the reports. yes, there was recommendation for follow up and also the report said the colposcopy was unsatisfactory (another sign that there should be follow up). Umm, I was a little "annoyed" to say the very least.

    And I would second everything that's been said about cryo, especially if you are dealing with a moderate or severe dysplasia. Get the leep so the sample can be biopsied and it can be determined if all the dysplasia was removed (clear margins).

    To all the ladies, be diligent with your care. If something doesn't seem to add up, or you are uncomfortable with something, ask questions. Request answers. Research from reputable sites - (not ones that promote certain products) and take that knowledge to generate your questions for your doctors. Have faith in your doctor, but throw in a healthy dose of skepticism - doctors are human, they may not mean to miss something, but we all know this can and does happen.

    My best to you, fairydust.

    Karen

     
    Old 01-31-2007, 11:57 AM   #9
    fairydust7
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    Re: really freaked out

    Thanks Karen! I am going to call my doctor tomorrow and ask for a copy of my pap smear report to be made. I also have two questions I need to ask him anyway and he is only in on Thursdays.

    Something I'm also wondering, if he can see that my cervix is clearly infected, why does he have to wait for the biopsies to come back? why can't he just schedule a leep or something and get it over with? Is it to make sure there's nothing else that the pap smear isn't showing and that he doesn't see? And if the pap smear came bask high grade sil, if there was cancerous cells on the cervix the pap smear would've picked it right? Cause I remember the nurse telling me when I called for my results that it isn't cancerous yet, but it most likely would become cancerous if I'm not treated.

    I'm sorry, I'm just still really paranoid and anxious. I absolutely hate having to wait 3 weeks for my colposcopy results to come back.

     
    Old 01-31-2007, 12:33 PM   #10
    karen32
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    Re: really freaked out

    Most docs like to wait for confirmation of their suspicions with the biopsy report. That way they know what the appropriate treatment should be. Also, if the transformation zone (entrance to the cervical canal) is involved in any way then that rules out certain procedures (such as the cryotherapy and perhaps laser). I have heard of "see and treat" for a high grade lesion. Usually treatment is leep so a pathologist can review the tissue removed. The pap smear IS NOT a good tool for picking up an invasive cervical cancer. It is a great screening tool to detect pre-cancerous cell changes, but even then it is not 100% effective.

    Waiting is so hard, do your best to keep busy and the time will go by faster.

    Karen

     
    Old 02-01-2007, 12:43 PM   #11
    fairydust7
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    Re: really freaked out

    Thanks again Karen for answering my questions. I called him today because last Thursday I forgot to tell him that I still get ocassional pain right above the pubic bone to the left a little bit, I assume its an ovary thats causing it. I completely forgot last week, the biopsies kinda distracted me. It was somthing I told him on my annual exam, but i was also having some bleeding between periods that month so he said to wait and see, that it might be hormones or something. But its been more than a month and I get this pain that only lasts for a split second then its gone. Some days I don't get it at all, some days I'll get it 10 times in a day. It doesn't hurt much, more of an annoyance than antyhign else. But I realize that I better not let it go either and not get it checked out. So I called him today and he still has not called me back.

    I'm thinking about calling tomorrow if he doesn't return my call (its 3:40 and the clinic closes at 4 or 4:30) since I called a 2nd time at 2pm also, to ask to change doctors or have another doctor see me about this. It's one thing if he worked at this clinic 5 days a week and doesn't call me back until tomorrow morning, but since he only works Thursday, I don't wait to have to wait until next Thursday to call him again.

     
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