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Very new...need some guidance! Very new...need some guidance!

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Unread 04-27-2004, 05:55 PM
Very new...need some guidance!

Hi there. I feel kind of strange about this and don't really know if I am in the right place...brief history: Had normal paps up until about a year ago. They continued to be abnormal, so I had a colposcopy in September of this year. It revealed mild low-grade dysplasia. My doctor said not to worry!! My 3 month follow up pap came back with low-grade dysplasia once again. My next on (done about a month ago) returned as high-grade moderate dysplasia. I had my 2nd colposcopy done yesterday and am awaiting results. My doctor said that depending on the results, I will have to undergo a LEEP or a cone. I am 28 years old, unmarried, desperately want to have children someday in the future, and am quite honestly scared out of my wits. I cried like a baby in the doctor's office. I have been reading all about LEEP's and cone biposies, and I understand what each entail...what I am not able to find out is what to expect...or what it to feel like. Although I have not had a hysterectomy, this is the only website I found that could possibly answer these questions for me by people who have actually gone thru what I am about to go thru. Am I being a baby for being so scared and sensitive about this? I find myself bursting into tears sometimes! ANY feedback or guidance would be GREATLY appreciated...Thank you!
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Unread 04-27-2004, 06:23 PM
Very new...need some guidance!

Welcome to Cancer Concerns! I'm so happy you found us!

Actually, I'd say your response is pretty normal. Sometimes crying is just the only thing that makes sense. It's very therapeutic. Go ahead and cry. This is a difficult position to be in, and it's very hard to have all of these unknowns.

I had my first abnormal PAP at age 23. I was ultimately treated with a cone biopsy and then had normal PAP's for 10 years. Approximately 90% of women are considered to be "cured" after a cone. The cone serves two purposes--one, to diagnose the specifics of your condition (how involved), and two, to treat the condition.

The cone biopsy is done as an out-patient procedure under general anesthesia. Most women complain of feeling tired or crampy for a couple of days, and then most return to normal. I took two days off of work (because I lift extensively), and then was fine. Others go back to work the next day. There is typically light bleeding for 2-3 weeks.

A LEEP is less invasive and typically takes a slightly smaller sample. There is less discharge after a LEEP because the edges of the sample are cauterized by the heated wire that removes the sample. A LEEP is sometimes done in an office setting with local anesthetic. My LEEP was done as an out-patient under general because I had a D&C at the same time as well as some vaginal work done. Many women return to work the day after a LEEP. I had some mild cramping and felt "puny", but the "puny-ness" might have just been my emotional response to the whole thing.

Try to be optimistic. This condition is typically cured with a LEEP or cone, so most likely you will never need the hysterectomy as a treatment method. The majority of women go on to have healthy, uncomplicated pregnancies after a cone or LEEP. Some do have problems with scarring or incompetent cervix, but your doctor will be watching for those problems and will help you manage them if they should arise.

How can you help yourself now? Take good care of yourself. Eat well. Get plenty of sleep. Keep your stress to a minimum. Take a multivitamin (folic acid is believed to help our bodies fight off this condition, so talk to your doctor about what's best for you). Exercise moderately. Pray, meditate, do yoga. All of these things are believed to help improve your immune function to help your body work at it's maximal potential. It's a lifelong commitment, so start now!

Good luck! I hope all goes well for you. Please feel free to ask more questions, or just pop in and let us know how you're doing. We'll look forward to hearing how things go!

Sending 's and 'ers in your direction.
Unread 04-27-2004, 07:19 PM
Very new...need some guidance!

Hello Sincere,

Jeanine has given you excellent advice. I really don't have anything to add, except to say I know how you feel. It is very scary, you are not being a big baby. The good news is that what you have is very treatable, you just need to monitor the situation very closely.

I have had two cone biopsies, they really aren't too bad. I had both of them on Fridays and was back to work and feeling fine on the following Tuesday. I could've gone back on the Mondays, frankly, but decided to build in extra R and R days.

Keep posting your questions and concerns and take good care of yourself.

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Unread 04-27-2004, 09:13 PM
Very new...need some guidance!

This is the best place to come. I know how frustrating it is being not quite cancerous but having something that can definitely head that direction. I was diagnosed with CIS in Feb. I had always (14+ years) had normal paps. I think that my CIS was caused by an extremely stressful time in my life. That darn HPV just got the best of my immune system.

Anyway, I had a LEEP in the middle of Feb. My experience was particularly painful but I am the exception NOT the norm. The good part is it only lasts for a few minutes. The emotional aspect of these procedures is worse than the physical.

I am 32 and have never had children. My doctor told me that hopefully I should be cured after the LEEP. He also told me that it shouldn't affect my ability to carry a child. From all the reading I've done, because my LEEP margins were clear, I have about an 80% chance of being cured. It is a little lower than the number given by most docs because I had some endocervical glandular involvement. I won't find out for sure if everything is gone until my next pap in the end of June.

Hang in there. Follow the advice about taking care of your body. In some ways this has been a wake up call for me considering nutrition, etc. I now try to eat healthy and take vitamins. Heck, I'm now even a everyday tooth flosser Take better care of your body and try not to dwell on this too much. The waiting is the worse part. But, you have a very good chance of coming through a cone or LEEP cured. Good luck.
Unread 04-27-2004, 09:20 PM
Very new...need some guidance!

I can't add anything to Jeanine's post, but I will tell you my personal experience: I had a LEEP several years ago, and I was really scared to death of the procedure itself and the thought of pain involved (Whenever I had a biopsy I would practically push myself off the table trying to "get away" from a painful experience....). However, I found LEEP to be quite painless. I was so scared I asked my doctor to give me a Valium, which she did--but the procedure was over with so quickly that I realized I could have gone without the pill.

Another reason to take heart--in many cases LEEP or cone are curative (not mine, but it did normalize my paps for a while).
Unread 04-28-2004, 05:59 AM
Very new...need some guidance!

I had the LEEP in march, i hope my story makes you less nervous, i had a great outcome from this. i had the LEEP done because of mild/severe dysplasia, it was not terrible, there was absolutely no pain, but i have to warn you the smell is terrible, burning flesh! and you will have smoke come out of you, i did not know this and thought some thing was wrong....nothing i had read explained this would happen...LOL! anyway i had mild cramping and a discharge for about 3-4 weeks, and still could smell the burning flesh smell and the doctor said to use FDS or Summers eve sprays or wash, and it did help me feel less smelly, i no longer noticed it once the discharge stopped.

My path report came back cervical cancer, i had a micro-incasion 1mm deep and 3 mm wide, i was referred to a GYN/ONC who explained it much more than my doc, she said i had cervical cancer stage 1A1 but the margins came back clear, the LEEP had gotten all of it!!! but i also had adenocarcinoma in situ (stage 0 cancer if this is confusing, it is the stage between severe dysplasia and invasive cancer) but the margins were not clear on this. that did not mean it was still there, since the LEEP burns the edges of the tissue, it ment they were unsure, i could have had the LEEP repeated, to determine margins, but i choose to have a hysterectomy, i am 25 we have 2 children, we did not plan more, my husband is military and go ne ALOT!! i had my hysterectomy 2 weeks ago, my cervix was perfectly healthy upon removal, there was not even dysplasia!! I am still very happy i had the hysterectomy, i had LAVH and have felt fine since i had it, i went for my 2 week check up yesterday and she is lifting all restrictions next week for me becasue i am doing great!! i just wanted to share my long drawn out story with you t o give you hope that this does not have to be bad, I was "cured" with the LEEP but choose to take it a step further becasue i was finished with my family, for thse that are not, there is hope, and i was alot further progressed even though i had not had an abnormal pap in my life! Good Luck, i hope you have such a good result as i did!
Unread 04-28-2004, 07:22 AM
Very new...need some guidance!

... the doctor said to use FDS or Summers eve sprays or wash, and it did help me feel less smelly ...

wow... so there is a reason those things are available! Please, sincere, get the doctor's okay before using them, though. They can screw up your natural balance and you can wind up with a yeast infection. It is so great to have that information ahead of time: not knowing about the burnt smell would be so scary, and it's wonderful to hear that FDS etc. can be used for after the leep procedure!

sincere -- you are certainly not being a baby! As Jeanine says, "crying can be very therapeutic."

Unread 04-28-2004, 07:27 AM
Very new...need some guidance!

Thank you so much to everyone for sharing your stories and experiences. I am starting to settle into the whole idea a little bit better. I am still in the stage of not really wanting to accept or deal with what is to come. Hopefully it will all be cured and I can go on about a normal life and have kids someday, but I am also trying to prepare for more disappointing outcomes. I have also looked in to starting vitamins such as folic acid and B vitamins. I have read that these can help the immune system do its job. I guess being as young as I am, I didn't think I'd have to worry about these sorts of problems until I was much older, but I guess that was very naive of me. So I have to really start looking at living healthier and doing my part for my body and well-being...I will know by either Friday or Monday which procedure I will have to have and will keep you all posted. Thanks again SO MUCH!!!!! :-)
Unread 04-28-2004, 02:19 PM
Very new...need some guidance!

Originally posted by empresse

wow... so there is a reason those things are available! Please, sincere, get the doctor's okay before using them, though. They can screw up your natural balance and you can wind up with a yeast infection.
sincere -- you are certainly not being a baby! As Jeanine says, "crying can be very therapeutic."

my doctor said as long as it was the wash (like body wash) not douche it was OK, and the deoderant sprays are OK to use, i am sure every doctor has their own opinion, but mine said just do not douche.
Unread 04-28-2004, 09:45 PM
Very new...need some guidance!

Hi Sincere,
I had a Cone and a D & C done under general. Unfotunately my outcome was cervical cancer was 1 A. But when I woke up from the procedure itself I was suprised I felt no pain. I had no cramping and no problems. I went into the procedure around 8am and was at home resting before noon. They had pathology look at the samplings while I was under so when I woke up I knew the results.

I ended up having to have a radical hysterectomy but am very lucky that mine was caught early.

Wishing you the best of luck!!

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