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Reoccurence after LEEP, really scared Reoccurence after LEEP, really scared

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  #1  
Unread 06-03-2004, 09:39 AM
Reoccurence after LEEP, really scared

Hi there. I am new to this site and I am very happy to have found all of the support and comfort that you all give to each other. The reason I was searching for information on these topics is that I had my first abnormal pap in November of 2003 at age 26. It was severe dysplasia, even though it had been only 11 months since my last exam. I had a LEEP in January and went for my 3-month follow-up three weeks ago. My doctor said that I didn't have much to worry about because all my margins were clear and the areas around the infected areas were fine. I got a call from the nurse yesterday that my pap was abnormal again. I don't understand?! The doctor had told me that she has only one patient that has had it come back, and she has had many new partners since then and was probably re-infected. So I wasn't too worried and now I am freaking out! When I asked the nurse how this could have happened she said that I could have been re-infected, which is impossible because I am with the same partner, or it is just a new spot (what causes this?!). Now I am completely upset because I am single, but want to get married in the near future and I want so bad to have children. But, after reading a lot on this topic I am scared that I might be dealing with this forever and ultimately end up with a hyst. Why did this come back?!?! Any support or prayers would be appreciated. Thanks.
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  #2  
Unread 06-03-2004, 03:57 PM
Reoccurence after LEEP, really scared

hey, bizzy--

First off, welcome aboard. You asked for prayers and support, and that's just what you'll get here!

Second--a LEEP is curative in many cases, but not all. (I think the figure is 90+ %). Let me ask you this--how abnormal was your pap to start? And how abnormal is it now? Do you have HPV? If so, is it one of the nastier strains? (Since your doctor mentioned being re-infected, I am assuming that is what she means).

A bit of reassurance--Although I know you're scared and disappointed that the pap was not clean, it doesn't necessarily mean that a hyst. is the next step. The doctor can do another LEEP, or a cone biopsy; if the reports are not good still and you want to maintain fertility, there are surgeries that can address cervical problems while leaving the uterus intact.

Meantime, get as much information as you can. It helps to know as many specifics as possible when you cruise the Internet for info. Saves you scaring yourself needlessly.

I hope for a good outcome for you!
  #3  
Unread 06-03-2004, 04:05 PM
Reoccurence after LEEP, really scared

Folic acid is a good supplement to take if you have HPV. Ask your doctor before you start taking it though.


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  #4  
Unread 06-04-2004, 08:36 AM
Reoccurence after LEEP, really scared

Thanks for your replies. My doctor assumes that I have HPV, but I don't think they ran an actual test. My first initial abnormal pap showed severe dysplasia. Can they test for the HPV and if it is a really aggressive strain? I would think it was a pretty aggressive one since it only took 11 months or less for it to develop into severe and now it is showing severe again. The weirdest thing about it is that she thought that she got everything and when the pathology report came back it said that she did. So, I guess I really wasn't expecting this all over again. I was nervous of course, but I really didn't think this was going to be something I had to keep dealing with. I am glad my doctor is optimistic and said it would probably be normal, but now that it isn't I feel so alone and wonder why this has happened to me. Like, is there something else wrong with me too and I can't fight this off? I will do whatever I have to do to cure this, but it is just really scary and the thought of it just brings me to tears. I was just wondering what the reoccurence is actually like and I am glad to hear that they can do additional LEEPs or cones or whatever as well. I have an appointment on Tuesday to have a coloscopy done so that she can check it out and see what we are dealing with. I do take a multi-vitamin, but I didn't know about the folic acid. I will ask about that on Tuesday as well. Thanks for the advice!
  #5  
Unread 06-04-2004, 09:15 AM
Reoccurence after LEEP, really scared

bizzy-

Whenever a pap comes back severe dysplasia, my doc's lab automatically tests for the presence of HPV, and the strain. I know how you are feeling--I felt the same way! It just didn't seem fair to me, and it WAS completely unexpected, even though something like 80% of sexually active women carry some strain of this virus. Unfortunately, HPV IS a virus, and you cannot "cure" it. It will always be there. The best you can do is build up your immune system to fight it. Folic acid is a good choice. I have also read a lot about an herb called astralagus, which is an anti-viral. I take that in addition to folic acid and selenium.

Good luck with your colposcopy!
  #6  
Unread 06-21-2004, 12:18 PM
Reoccurence after LEEP, really scared

I went in for my colposcopy on the 8th and I am now waiting for the results. When she initially looked through the equipment after applying the vinegar solution she said that she couldn't see any "white spots" (I guess that is what the dysplasia looks like). But, my pap had showed high-grade squamous cells again (which is what prompted the test on the 8th). She said that it is possible that the lab just mis-read the tests because other changes may look like these abnormal changes. Has anyone ever heard of this before? She did see one area that might be a little abnormal, so she took a biopsy of that as well as a couple other ones on the outer edges just to be sure. I am waiting to hear back from my dr. and it will be two weeks tomorrow. I am trying to remain optimistic and hope it is a fluke, but also be realistic that it is something else. Has anyone had experience with this -- recurrence vs. errors subject? Thanks!
  #7  
Unread 06-21-2004, 04:23 PM
Reoccurence after LEEP, really scared

Hi. I've been in the boat you are in and its mighty scary. Here to offer some perspective and some reassurance.

HPV -- Where did it come from? Doesn't really matter. Could have picked it up YEARS ago, could have picked it up this year. It's so prevalent that it can't be thought of as something only promiscuous people get. I felt "dirty" and "infected" until I found out its something most of us have been exposed to, many of us have been infected with and some of us come down with. Why did other people's immune system hold it in check when mine didn't? Dunno. Reinfection because someone's been cheating? Unlikely.

Future fertility? Who knows what will happen in your case but I here is where I can off some reassurance. I had CIN I in 1999 and it was treated with laser. It came back CIN II-III over the next 5 years, I had 2 more LEEPs, 2 successful pregnancies and finally at the age of 42, a hysterectomy. I guess what I'm saying is time is probably on your side. Having said that, I would prepare yourself for the fact that you might have to hear the word "hysterectomy" while still in your childbearing years.

About your pathology reports, clear margins but continued dysplasia -- only your doctor can put that in perpective. Here's my story though. For my last pap I showed high grade lesion but the biopsy was negative. Had a hyst (not a bad thing, family is complete and I was sick of the worry) and funny thing but no abnormality showed up. It was explained that maybe my poor cervix was so traumatized from years of procedures and my cervical "skin" was never gonna show up as normal on pap. Biopsy of the area would come up normal because its a clean sample as opposed to a scrapping. Here's the rub: Abnormal pap. Biopsy indicated. No white areas show up on colposcopy so the biopsy is random. If the biopsy is normal how do you know if they biopsied the right spot? How do you know if the bad cells on pap are higher up in the canal where the colpo/biopsy can't reach? If you've already had two leeps how much higher can they go? So they recommended hyst and I wasn't sorry.

I relate all this to you with tremendous reservations. I don't want you to lose faith in the pap test, which in spite of it's flaws, is a life saver. I don't want to undermine a thing your healthcare provider recommends. I don't want you to say you read about someone who had a healthy organ removed, that the paps and biopsies aren't worth the paper they are written on. Medicine isn't a perfect science. We all have to find doctors we trust, get as much info as possible and relate it to our situations and make the best decision we can. In the mean time work on that immune system.

All my best to you.
  #8  
Unread 06-21-2004, 06:02 PM
Reoccurence after LEEP, really scared

Sorry that you are having these worries. And the waiting can be miserable. Hopefully, you will hear something soon.

Does your doc do a PAP (cells go on a slide) or a ThinPrep (cells go in a vial of fluid). The ThinPrep is used more recently on women with histories of abnormal PAP's, and it is more accurate than the PAP.

Yes, I have had an abnormal PAP followed by a normal biopsy. Most disconcerting. I was given the option of watching and waiting or going forward with a LEEP ( previously had a cone several years earlier). I was leaning toward a LEEP (I'm not a good watcher/waiter), so I asked for the gyn/onc's opinion. The gyn/onc suggested going forward with the LEEP--just to be sure. And more abnormal cells were found.

I'm keeping my fingers crossed that things come back clear enough to determine the best course of action for you. Feel free to request a second opinion of a gyn/onc if anything is unclear. They are the specialists when it comes to female cancers and precancers, and they know the most current treatment and surgical procedures.

Please let us know how things are going!

  #9  
Unread 06-21-2004, 07:05 PM
Reoccurence after LEEP, really scared

Sorry you are having these problems and I have been there done that. I have had 2 leeps and 2 cryos. Both of the biopsies they took after the leep procedures came back NORMAL....I went back in for my pap and it came back abnormal. The doctor cant figure out why the biopsies come back normal and the pap doesnt. The last leep I had back in November, he removed a piece of my cervix 10 times the size of the previous one. I have given up. I went in for a consulation with my GYN after the last abnormal pap and he asked the question "Are you done with your family". This didnt bother me because I new it might come down to this. Just like the other girls said, there are other options before Hyst. I have 2 kids and I am done so thats why I am going on with the surgery. Dont give up, ask the doctor about your other options because there are some out there. Keep us updated and we will be thinking about you.

MichelleLee
  #10  
Unread 06-22-2004, 04:40 AM
depends on child-beaing?

i had numerous "abnormal" in my 20's...

then, numerous "normal" ones in my 30's..

when i hit 40

had my yearly and had CIN III

i've had a baby and two miscarriages after
i was done...

given how much i dislike multiple inpatient MD visits, i opted for a vag. hyst.

i had a second opinion as well...

I could have gone the LEEP route, but since i was done child-bearing, it was of no consequence....

you need to decide what your needs are and what u can tolerate as far as procedures!

God Bless!

~Liz
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