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Old 08-13-2007, 12:48 PM   #1
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peanut222 HB User
Beyond Scared

Hi - first time here. This is my situation - I need some support because I am so scared I can barely function!!!

2 weeks ago I got a call from my gyn saying that my pap came back abnormal, showing signs of moderate and severe dysplasia. I was so shocked - I couldn't believe it since i go for a pap yearly and have never had an issue. I know abnormal paps are common, but I thought you usually start with "mild" dysplasia? Then last week i had to go in for a colposcopy, which really hurt and I was not expecting that. Plus my dr took like at least 5 tissue samples which really scared me deeply. After the test i asked my gyn how it looked and she said "I don't make a diagnosis without lasb results" in a really cold way which terrified me even more. I am convinced I have cancer. i can't sleep at night, I can't eat etc...help. I am 32 and getting married in 4 weeks

 
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Old 08-13-2007, 01:54 PM   #2
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Aryes517 HB User
Re: Beyond Scared

Hi Peanut

Welcome! You have come to the right place to find answers and support.

My story is very close to yours. It all started June 06. I had my first abnormal pap after 20+ years of normal results. I had a colpo, and the dr took 4 biopsies. The results were CINIII severe dysplasia. I had a LEEP and that came back CINI mild, so as you can see dx dysplasia can run the gammit of clear to cancer and anything inbetween.

It is hard to tell from a pap exactly what is going on. Think of an abnormal PAP as a signal that something isnt quite right. The colpo is much more accurate and the LEEP or cone is usually an exact picture of what is going on.

Poke around on the board and you will see a wide variety of dx and choices made by women who became very informed out of necessity.

Try not to panic, you're not alone. Here you will find tons of good and accurate information on how to deal with this.

Everyone here is very helpful so take advantage and ask questions.

Take care
~Lisa

PS.
Congratulations on the wedding. I'm getting married on Sat.

Last edited by Aryes517; 08-13-2007 at 01:55 PM.

 
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Old 08-13-2007, 03:08 PM   #3
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peanut222 HB User
Re: Beyond Scared

Thanks. I think my doctor's horrible bedside manner is adding to my fear. Also, I have been experiencing weird bladder pressure and urinary urgency and constipation for the last month and I came up negative for a UTI. But I know something isn't right...I'm not sure if the pap is related...

 
Old 08-13-2007, 04:20 PM   #4
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LAgirl81 HB User
Re: Beyond Scared

Hi there peanut,

Welcome to this board! You will find that you are in a great online community of supportive women experiencing similar situations to yours. That said, I know exactly what you're going through mentally-- it's extremely psychologically draining and very scary.

After the initial blow of the diagnosis, the best thing for you to do is get more information on cervical dysplasia. Read, read, read. Ask various medical professionals (online or people you know) EVERYTHING they know about dysplasia. The more you know about this, the better you will feel about things.

The only thing you can do now, besides read up on dysplasia, is wait for your biopsy results and try and keep your mind off of it. That is really the most difficult part! But to help you feel a bit more calm about this, I will tell you all I know so far about the mysterious HPV and dysplasia.

I have been having abnormal paps for 3 years and every biopsy came back benign. I was tested positive for high-risk HPV, the culprit for all my abnormal paps. This past May my last biopsy came back as mild-moderate dysplasia. Given that I was on this borderline stage between low grade and high grade dysplasia, I opted NOT to receive treatment (a LEEP) after consulting with 3 different gynecologists who recommended three different treatments for me. I went with the advice of my best friend's mom (one of the gyno's I saw) who believes that too many gynos over-treat their patients so that they can avoid being sued for malpractice. In any event, this decision I made was mine and I decided to pursue a health regimen to boost my immune system which will help suppress my high risk HPV. Try doing a search on these boards for types of foods and vitamins you can take which will boost your immune system and help out with treating the dysplasia you have.

But rest assure that even if your biopsy results show that you have severe dysplasia (CIN III), there are various treatment options that will take care of the pre-cancerous areas on your cervix. There are risks involved, but only 1-2% of women will experience these and this usually happens with women who have multiple procedures done on the cervix or if a larger amount of tissue is removed. It is unlikely you have cancer now and all dysplasia is the pre-cancerous stage and this is great news because as long as you are on top of your health and regular check-ups, then you will never let the dysplasia progress to invasive cancer. And another thing-- it takes up to 10 years for dysplasia to turn into invasive cancer, if it even progresses to cancer at all. It is a very manageable problem, albeit very stressful, and as long as you keep up with regular check ups you will be fine.

But treatments to remove the dysplasia (LEEP, laser, etc) will NOT cure us of HPV nor guarantee us from the dysplasia coming back. The treatments have a high success rate, but improving your overall health along with the treatment is the best bet for keeping the dysplasia at bay. So do your homework and see what supplements/foods will vamp up your immune system. Take care and let us know how your biopsies came back! But remember, you will be fine.

 
Old 08-13-2007, 04:42 PM   #5
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sarmee HB User
Re: Beyond Scared

I understand what you are going through I went to get my colposcopy today after my first abnormal pap, and I have to wait til Sept 7th before my doctor can see me to do treatment and go over my results with me. She didnt tell me alot and I am just trying not to freakout from being so scared. I just got married two months ago and now this happens to me, nice wedding present huh. MY doctor said she wants to freeze them off. I am worried.

 
Old 08-13-2007, 04:58 PM   #6
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flipflop2 HB User
Re: Beyond Scared

Hi there!! I know how you are feeling too! I had my first ever abnormal pap results earlier this summer and my first colposcopy last week. I had 5 biopsies too which was more than I was expecting and scared me too. I have been trying really hard to relax and keep busy. The more people I read about and "talk" to on the boards the better I feel. I think it's important to try and take this all one day at a time and not jump into complete panic (I know- far easier to say than do).
Having said that- I also think I am able to be a little more calm because I have a fabulous dr. She also wouldn't tell me much about the colpo until she had a lab report, but she has a very good bedside manner and I trust her totally. I honestly feel that if you're not having the most confidence in your doc you should explore avenues. I have a few friends that are cancer (various type) survivors and they all say that faith in your medical team is a huge factor.

Good luck and keep me posted on your results. I am always available to chat while you are in the terrible "wait" time.

 
Old 08-13-2007, 06:55 PM   #7
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piperpilot HB User
Re: Beyond Scared

Peanut,

This is a popular misconception--dysplasia is, in general terms, not a progressive disease. It can present at first as CIN 1,2 or 3 and many times, more than 1 state. Mild, moderate and severe only indicate the depth of the epithelium that the lesion penetrates. In most research abstracts, you will see CIN 1 discussed as a seperate entity from CIN 2 and CIN 3. Scientists do not agree on the ability (and other neccessary factors) for CIN 1 to actually progress into CIN2/3. Don't panic. The odds of you having cervical cancer if extremely low if you have had regular paps. The good news is you caught in plenty of time.

Last edited by piperpilot; 08-13-2007 at 06:57 PM.

 
Old 08-13-2007, 07:45 PM   #8
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RouxWoman HB User
Thumbs up Re: Beyond Scared

Quote:
Originally Posted by peanut222 View Post
Hi - first time here. This is my situation - I need some support because I am so scared I can barely function!!!

2 weeks ago I got a call from my gyn saying that my pap came back abnormal, showing signs of moderate and severe dysplasia. I was so shocked - I couldn't believe it since i go for a pap yearly and have never had an issue. I know abnormal paps are common, but I thought you usually start with "mild" dysplasia? Then last week i had to go in for a colposcopy, which really hurt and I was not expecting that. Plus my dr took like at least 5 tissue samples which really scared me deeply. After the test i asked my gyn how it looked and she said "I don't make a diagnosis without lasb results" in a really cold way which terrified me even more. I am convinced I have cancer. i can't sleep at night, I can't eat etc...help. I am 32 and getting married in 4 weeks
I know and understand how scared you must be. I was in your shoes a few months back and still going through it.

I too, had an adnormal pap with a Dx of HGSIL/ll. Then I had a colop which came back negative. The dr. said she did not really see any spots but she did take a sample tissue for a biopsy.
When that came back negative she scheduled me for a LEEP (on what?) and when she looked she said she would spare me the LEEP because she saw a spot which she took a another sample (turns out it was taked from the same spot that had not healed yet because it was only a week).
Then that came back negative, so she scheduled me for the LEEP. Results from the LEEP showed nothing and she told me to come back in three (3) months.
Well, I went back and they did another colop because she said that it was strange that my pap would show HGSIL/11. This time she mentioned the vigina, and she took (the interns) some tissue which was Friday before last. She said she would have results in about 2 weeks.
I am waiting and everytime the phone rings I almost jump out of my skin!

I am telling you all of this because I feel you are worring about cancer for no reason right now.Your test showed you have "moderate and severe dysplasia" and althought that is truly upsetting, the wonderful ladies on this board all say that it is not cancer and it can be treated successfully. PLEASE read all the post on this board and you may find that it will help you to relax more.

Understand that I know you are scared. You have a right to be scared, but I have learned that excessive fright and stress will only help to make the matter worse. Eat well, take vits/Folic Acid, etc. Keep you mind open and positive. So far from what you have shared, everything is still in a positive light.
I will add you to my prayers. Just continue to hold the thought that everything will be alright, and thank goodness whatever it is you caught in time. Keep us posted.

Blessings!

 
Old 08-14-2007, 09:06 AM   #9
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peanut222 HB User
Re: Beyond Scared

Thanks so much for responding! Your posts have made me feel definitely better. You're right - the waiting is horrible. What's the average wait for colp results? They told me a week....and I had my test last thursday. This whole dysplasia thing is pure agaony. HPV (not sure if that's even my cause) is a scourge. I'm glad they've come up with that vaccine...

I have some other issues and symptoms that are scaring me and making it worse too...pelvic pain, feeling like a I have to pee alot, bloating etc...

 
Old 08-14-2007, 11:06 AM   #10
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karen32 HB User
Re: Beyond Scared

"I have some other issues and symptoms that are scaring me and making it worse too...pelvic pain, feeling like a I have to pee alot, bloating etc..."

You might want to get checked for a uti. They are not exactly uncommon after a colpo or procedure. The speculum used for the colpo is larger than one used for a pap, so there is more opportunity for bacteria to get introduced to the urinary tract.

My colpo results and LEEP results each took one week to come back. Sometimes docs will give an indication as to what they *think* is going on, sometimes, like your doc, they won't. The biopsy results will be a better indication than a "best guess". I hope you get your results soon.

Karen

 
Old 08-14-2007, 01:28 PM   #11
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mom2nik2002 HB User
Re: Beyond Scared

Hi there Peanut! I'm so sorry you are going through so much stress right now! And, unfortunately, we all know how you feel.

In 2005 my pap came back LGSIL with high-risk HPV. After the colpo/ECC, my doc said he felt it was a LOT worse than the pap. He took 6 biopsies. The results were HGSIL with extension well into the endocervical canal. I had a VERY aggressive LEEP cone biopsy and the results confirmed HGSIL.

I have been in for paps every 3 months since. I just got my first abnormal since then (May 2007) but the pap was ASCUS so I'm not TERRIBLY concerned. But, with my history, I will ALWAYS be concerned about my paps. My doc said to get a repeat pap in a year but I have no intentions of waiting that long. I see him this coming Monday and I will discuss a repeat pap ASAP.

Your best action right now is to arm yourself with information. Get together a list of questions, etc. about your specific situation to ask your doctor next time you see her or speak with her. Keep track of everything. I have a file devoted to my GYN health. I get copies of everything and put them in my file. I keep notes, appointment information, etc. in this file. Seek a 2nd opinion...even a 3rd if you need to...before agreeing to any one treatment plan and, by that time, you'll be able to make an educated decision based on the education you have on the topic at that time.

Dysplasia is treatable. Even the most severe form is very successfully treated. Dysplasia does not always progress to cancer and, even if you operate on the assumption that it does, the process takes upwards of 10 years. Regular pap smears and treatment, when and if necessary, will drastically reduce the chance of cancer being present. It's HIGHLY unlikely a cancer diagnosis will be made based on even HIGH grade dysplasia on the pap. It is also VERY uncommon that the biopsy results are WORSE than the pap results and even MORE unlikely the LEEP results are worse than the biopsy. By far, the biopsy results are the GOLD STANDARD--LEEP results being more of a gold standard than the biopsy results. A pap is ONLY a screening tool and should NEVER be taken as a diagnosis. If the biopsy shows no dysplasia, it is highly likely your are FINE.

The symptoms you are describing do not seem to be at all related to your dysplasia. Dysplasia is usually without symptoms. Symptoms of cervical cancer do not even include the symptoms you are experiencing so I would not worry they are related. Howeve, if they are causing you discomfort, you need to get it checked out. It sounds more like you might have a UTI or maybe even IC. Definitely I don't think they are related to the dysplasia.

It is very hard to keep your mind off worrying but you NEED to. I've learned the hard way BELIEVE ME and, though I do worry about my possible recurrence, worrying will not get me anywhere and I push the thought out of my head anytime it presents. I will see my doctor on Monday and, until then, there's nothing I can do. I throw myself into my work and my children.

Also, the suggestions for boosting your immune system and becoming as healthy as possible are very worth the effort. You have to take your health into your OWN hands and do whatever possible to make yourself as healhty as possible. You are the ONLY one who can.
__________________
Elle
Proud Mommy to:
Nicholas 12/30/02
Emma Leigh 12/26/06

 
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