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  • AIS, LLETZ and clear edges

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    Old 06-10-2009, 02:02 PM   #1
    jana83
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    Question AIS, LLETZ and clear edges

    Hello ladies! I'm 25 yo, no children yet and I was recently diagnosed with adenocarcinoma in situ. (boy does this sound like an AA introduction LOL)

    (Long, but there is a question in there, I promise )

    After I got a C5 pap, my gynecologist performed a colposcopy which showed nothing. Thank heaven she immediately sent me to a gyn/onc for further examination. She performed a colposcopy as well, with only very slight changes visible, but certainly not as abnormal as my pap. She did a cervical biopsy (actually, she scraped off some cells), which showed at least CIN1, possibly more, but inconclusive. And she had me tested for HPV, which came back positive.

    So she scheduled a LLETZ conization (and again thank heaven for that - I was so resentful of the cone until I got my results back), which was performed under general anesthesia on May 15. I got the biopsy results on Friday last week.

    It's now almost a month since the conization and I've been experiencing pains in my lower back and abdomen, sometimes so strong it feels someone is stabbing me. Immediately after the cone I had very little pain, even less than my normal period. I mostly lay in bed the first week (like I was told to) and I took it easy the week after, but by then I was feeling completely fine. I had a normal period on the 27th, which was extremely painful.

    Now all of a sudden I'm feeling weak, nauseaus, I'm having mild hot flashes and cramping, and sometimes, if I walk around too much, strong back/abdomen pain. I don't bleed, I have a slight yellowish discharge which my gyno told me was normal and could last up to 2 months after LLETZ.

    What I'm wondering is whether this is normal, did I just overdo things or is this an indicator of something not going right. Does anyone have any similar experiences? What would you advise?

    Just being here on this board helps. Thank you for sharing your stories and advice.

    All the best,
    Jana

     
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    Old 06-10-2009, 04:01 PM   #2
    Pickle Eyes
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    Re: AIS, LLETZ and clear edges

    Hi Jana, I'm sorry to hear that you are having to deal with this. It sounds like your doctor is being proactive in your treatment. That is good.

    When it comes to the discharge, I had discharge for the first week to 10 days and not much after that. If you think you've been overdoing it, then I would probably say that that is the case. I don't know about the yellowish discharge continuing after a period, though. Maybe someone else will know and post.

    I assume the LLETZ diagnosed the AIS. Is that correct? May I ask, what did your doctor say the next step is?

    I hope this thelps.

     
    Old 06-10-2009, 04:06 PM   #3
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    Re: AIS, LLETZ and clear edges

    Hi Jana --

    Sorry to hear you are going through this....but welcome nonetheless

    I had a CKC, and honestly it was a breeze. I did take it easy, but went back to pretty much normal activity within a few days. Like Pickle said, maybe you are overdoing it a bit? I only had some watery discharge for about a week and a half or so, and then I was pretty much back to normal. I have read some other posts from people who had symptoms similar to yours, but I can't remember how they resolved. Sorry I can't help more

    Keep us posted on how you are doing!!

     
    Old 06-10-2009, 05:10 PM   #4
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    Re: AIS, LLETZ and clear edges

    Thank you for your fast replies!

    Pickleeyes, yes the LLETZ diagnosed it. I have no idea what the next step is, apart from a follow-up appointemnt in November, at which point they'll do a pap smear and maybe a colposcopy. My regular ob/gyn told me that medically I am considered healthy at this point, since all of the AIS was removed. Common sense tells me it's not that simple. I'll have to talk to the gyn/onc as my ob/gyn had never seen such a diagnosis before - meaning the AIS caught this early, with clear margins.

    I guess they'll just go back to more frequent pap smears and take it from there depending on the results. I would like to have other tests done, like an endometrial biopsy just to be sure that everything's ok, but I'm not sure it's going to happen, healthcare being what it is.

    I'm glad you guys had it easier after your cones. I was told to spend 1 week in bed and no sex for 6 weeks. I am amazed at other women getting the ok to walk around on day 3 . I'll try browsing through older posts for additional info. Thanks! I'll keep you posted.

     
    Old 06-10-2009, 05:18 PM   #5
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    Re: AIS, LLETZ and clear edges

    Hi again --

    That's great that you had clean margins, and your doc is correct that you are healthy -- but *you* are right to be concerned about waiting six months for follow up, in my opinion. Most people diagnosed with AIS have three month follow up for at least a couple years (at least here in the US). In addition to the repeat paps and colposcopy, I'd also want an ECC, and that's the follow up that most of the US ladies diagnosed with AIS who post here have had. Maybe you want to get a second opinion and/or find someone who is willing to follow you more closely? Perhaps even just raising this to your doctor will have him/her agree to more aggressive follow ups. The important thing with this stuff, especially the glandular problems, is to always stay at least one step ahead!!!

    An endometrial biopsy really isn't necessary for you at this point, from the sound of things, and won't tell you anything with regard to cervical problems since you were caught early enough -- meaning thankfully you shouldn't have any uterine problems (unless they are non-cc related).

    Keep us posted on how you are doing. I am sorry you are having such a difficult recovery

    Last edited by zoe96; 06-10-2009 at 05:18 PM. Reason: spelling

     
    Old 06-10-2009, 06:10 PM   #6
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    Re: AIS, LLETZ and clear edges

    Thank you for the advice and info, I will definitely raise this concern to my doctor. I might have to pay for some of it myself, but I'm willing to do this if necessary. I will definitely ask for an ECC when I see the gyn/onc in November - I'm not sure my ob/gyn does that.

    I'm off to bed now, it's 3 am here. Have a good night!

     
    Old 06-26-2009, 02:46 AM   #7
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    Re: AIS, LLETZ and clear edges

    I thought I'd post this here. I just got my second period after the conization and the flow appears normal, so stenosis or any abnormal scarring is probably not an issue I have to worry about! I'm also just in the usual amount of pain, no more. Next week I start having sex again LOL can't wait!

     
    Old 06-26-2009, 09:46 PM   #8
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    Re: AIS, LLETZ and clear edges

    That is good to know. Thanks for checking in with us, Jana!

     
    Old 06-27-2009, 03:29 AM   #9
    jana83
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    Re: AIS, LLETZ and clear edges

    I couldn't leave you wonderful ladies if I tried. Besides, I wanna be here to tell you about all the great, normal, healthy pap etc. results I'll be having in the future and hear about yours!

     
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