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Old 09-30-2008, 07:09 AM   #1
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New Member waiting for LEEP results from BAD DOCTOR?

Hi Everyone,

Couldn't sleep tonight. Past two nights I have had intense night sweats (new for me) and then insomnia right afterwards.

Found this board and already feel so much better about being on this bizarre journey.


My background: I am currently 34 yrs old. 2 Live births, 5 miscarriages.

5 years ago, after a routine pap came back with mild displasia, my doctor found an exterior cervical lesion...had a colposcopy, treated the lesion naturally with beta carotene, folirinse, etc, and then went in for biopsy. The lesion had disappeared, but my doctor took a biopsy from the site anyway. It came back and I seem to remember she said I likely had HPV and to watch the site, keep up my paps.

The next 4 yearly paps all came back looking great.

I had Pneumonia this May, for two months. I lost 30 lbs. Had intense insomnia and anxiety attacks over not being able to work at all. My doctor is convinced it was ALL stress-related. It took four full months to recover and when I did I went in for my well-woman check.

This year's pap, not so great. Severe, high grade displasia. Biopsy results are CIN 3. Exterior and interior lesions.

My doctor recommended getting a LEEP. A top-hat LEEP.

After setting the appointment I started having severe shooting pains in the lower left portion of my abdomen, as well as more up over my right ovary. So, the LEEP was delayed in order to figure out the source of these pains. Ultrasound showed I have an enlarged uterus, extreme thickening of uterine lining, possible uterine fibroid, fluid surrounding right ovary with waving blood clot right off of that ovary...possible signs of endometriosis or adenomyosis.

Endometrial biopsy came back clear of cancer. The best news so far.

Diverticulitis is being explored as a possible cause of the left-presenting pain, as is Pelvic Inflammatory Disease. I was put on Flagyl as a way to try to clear up those pains (14 day treatment)...which seems to have worked...the left-presenting pain has subsided though I still have a low-grade fever. I have been hovering between 99 and 100 for over a month now!!

I finally went in for the LEEP 4 days ago. I had to really build myself up emotionally for this procedure and the doctor turned out to be, in my opinion, a nightmare. No bedside manner, running over and hour late, didn't explain what she was going to do as she was working, and I was too loopy from Xanax to remember to ask questions. The procedure hurt much more than I expected it to. After she was done she told me she had done a cone biopsy, not a top-hat as was requested...because she's been doing this for 12 years and never has seen a need to do a top-hat. HUH???

My doctor and three nurses (including the one who works for the doc who performed the LEEP procedure) all had told me that I would be getting a top-hat LEEP...because they wanted to be certain to clear away all of the problem cells for biopsy and couldn't tell how many lesions were inside of my cervix.

I was also too out of it to remember to look at the "cone" which is too bad because then I might have been able to tell my regular doctor how much of my tissue had been taken out. Grrrr and duh.

When I questioned the LEEP doc later that night, once my sedatives wore off, she was so upset that I didn't trust her and told me she was very busy. I tried to explain to her how nervous I was about not getting all of the lesions and she just dismissed me by saying she would call me Monday with the results. NO CALL AT ALL TODAY (Monday).

After I spoke with that LEEP doc, I called my regular doctor's nurse and she was annoyed that I had questioned the LEEP doc because apparently the LEEP doc called to complain that no one should be telling (future) patients of hers what procedure they should expect! Also, my regular doctors nurse was super curt with me and said I'll just have to trust the LEEP doctor.

I feel like I'm back in Junior High.

Anyway, my question is: When a cone LEEP biopsy is done, how can one be certain that all lesions along the cervical canal were taken? What is the possibility that this doc missed anything?

Also, because we had to wait so long (2 weeks) to get the LEEP done due to those other uterine tests, my period was due to start right now (4 days post LEEP) and nothing is happening.

I have had light bleeding, the coffee grounds, moderate to severe cramping, and now things seem to be clearing up (well, except for the cramping..it's continual)..but no sign of a period.

What is the possibility of a "stuck period" due to scar tissue formation? I'm a little worried that because my uterine lining is so thick (it has been causing massive clots and bleeding during my periods for the past 6 months now), it really needs to come out and not get stuck in there and cause an infection. I have enough stuff going on!

Did I also mention I have an ear infection and a cold? I feel like I am under attack!!

Do I just watch for a spiked fever to indicate another infection?

I don't feel like I can call my doctor anymore. What should I do?


Anyway, after I get my LEEP results and MRI, saline uterine injection tests and a hormone panel is next. Need to find out why I'm in such an estrogen dominant state and how to fix it.

Carving out as much stress from my life as possible. Drinking lots of water, taking my prescribed regimen of supplements. Not eating much as I still don't have much appetite from Pneumonialand.

Any advice/thoughts would be helpful.
Thank you all in advance!

 
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Old 09-30-2008, 06:44 PM   #2
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Re: New Member waiting for LEEP results from BAD DOCTOR?

Sorry about your bad experience.

The pathologist will look at your biopsy sample and will examine the margins of the tissue to see if any lesions extend to the very edges or not. That is how they determine whether any dysplastic tissue was left behind. If the margins are clear (negative), then it is assumed that all dysplasia was completely contained within the removed sample.

Even if you have positive margins, the cauterizing that the doctor does of the wound sometimes destroys any residual dysplasia, so it's not always necessarily a horrible sign. I myself had positive endocervical margins but have nonetheless had negative Paps and endocervical scrapings since my LEEP.

Yes, it is possible that your period has been prevented from escaping because of the LEEP. At only four days out, it's probably from swelling rather than stenosis (scarring) because scar tissue takes time to form, but either way, you should probably contact your doctor. They can gently open your cervix to allow the blood to come out.

Last edited by Timber; 09-30-2008 at 06:49 PM.

 
Old 09-30-2008, 10:58 PM   #3
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threeizamjcnmbr HB User
Re: New Member waiting for LEEP results from BAD DOCTOR?

Thank you!

It was so healing to be able to just let everything come out here on this board.
I was finally able to get to sleep after doing so. I did stress all day, even though I tried so hard not to. The doctor called at 5:30p.

She was much nicer this time and told me that the cells on the outside were worse than the ones inside. The overall diagnosis was CIN 2, but with negative margins.

I asked her to please explain how we can know that all damaged cells were captured during a cone and not a top-hat and she explained to me about the difference between continuous lesions versus skip lesions and said she was 95% sure she had removed at least 95% of the damaged tissue and was also 95% sure that none of it would come back.

I also inquired about my period not coming and she said that LEEPs never interfere with periods...so very different from what others have said online. I have to say I don't fully trust her even though I want to!

Anyway, I DON'T have cancer at this point and that is awesome. Also, about an hour ago I finally started to bleed what looks like could be my period. Yes.

I'm curious, is prolonged or intermittent bleeding, a sign of healing and then tearing/infection from a LEEP? Or is it just that everyone is a little different?

 
Old 10-01-2008, 06:36 PM   #4
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Re: New Member waiting for LEEP results from BAD DOCTOR?

I'm glad you talked with her and feel alittle better from that discussion.

Yes, everyone is different. One thing I've read about bleeding at about 7-10 days is that when the scab falls off or stitches start to discolve sometimes there is a little more bleeding than there had been. I experienced that after my hyst. As long as you aren't filling a pad per hour, you should be ok. If you are filling pads for days in a row, then I'd suggest calling your doctor. IF you fill a pad per hour, go to the ER.

Have you asked for a copy of your pathology reports (from the last couple of years)? If not, I highly suggest you do. What type of atypical cells do you have? squamous or glandular/columnar (or both)?

I hope you are feeling well today.

 
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