Here I am again-I need your feedback! - Human Papillomavirus (HPV) Message Board

k2626 · 06-05-2007, 09:45 PM

6 months ago I was diagnosed with HPV and abnormal cells. I went in for a biopsy and coloscopy and was told the following week I was "clear" and to come back in for my pap in 6 months. I went in for my pap about 2 months ago and my doctors said if you dont hear from me dont worry-no news is good news but follow up anyway. So I called to follow up and never heard back, figured I was clear again. I called again about a month later to refill my birth control and asked the assistant to check to make sure my results came back ok. Well that day my doctor called saying I needed to come in for another biopsy because they thought I had mild dysplasia. I was so upset that A. she never called me and B. she didnt even return my initial call on this! Time matters with these type of things!

At anyrate, I went in for my biopsy and coloscopy again and the doctor said if it comes back as dysplasia then we will have you come in for a cryo. So today, an assistant called and said I had to come in for a LEEP very soon. I asked him if it was the same as a cryo and he said no. When I questioned why I was not having the cryo he said he did not know. When I asked what my results from my biopsy was he just read it from my file and could not even announciate half the words.

So now I am even more upset and of course scared. Does anyone have any idea why my doctor would switch from a cryo to a LEEP? From what I have read, LEEPs are more agressive so maybe the dysplasia is worse than she expected? What happens during the LEEP? I am so scared!

LAgirl81 · 06-05-2007, 09:53 PM

Hi there,

First of all, try not to be too scared or worry too much even though I do know how extremely frightening this all is. You must remember that this is all PRE-cancer and all this is quite successfully treated.

Secondly, I believe your doctor is being EXTREMELY unprofessional in the way he gave you your results. They should've definitely told you right away when your results came back-- I think you should formally complain and perhaps switch doctors asap. I would also switch doctors because they do NOT seem to be informative at all in this matter! I would be livid if I were you!

Timber · 06-06-2007, 07:55 AM

Try to calm down. Nothing horrible is going to happen to you. I promise you that.

I agree that your doctor should have called you back. Very bizarre that she didn't.

Now, cryo is not to be used on anything beyond mild dysplasia. Your dysplasia has probably progressed, but you don't need to panic about that. It's 100% treatable and you're going to be fine. I promise.

Read some LEEP stories on this board. You'll learn that LEEP is a simple, easy procedure for almost everyone. I had mine about a year ago. It was painless and no big deal whatsoever.

LAgirl81 · 06-06-2007, 11:20 AM

Hi there again,

I'm sorry I didn't get to finish my post yesterday-- my computer lost internet connection!

Anyway, what I was going to recommend that you do was to FIRST find out exactly what type of dysplasia it is that you have. Mild (or CIN 1) is NOT treated and merely kept a close eye on. Moderate to Severe (Cin 2 or Cin 3) is usually treated with LEEP or laser, etc.

If you are this concerned with doing the LEEP, I would HOLD OFF on it if I were you until you knew *exactly* what was going on with you. You need to be proactive with your health and you have the right to know absolutely everything about your body. So I would suggest you go in and just *talk* to your doctor and take a list of questions. I would not arrange any surgeries until you knew exactly what your diagnosis is. Yes, the LEEP is a quick, effective procedure but there is also risk of scarring which can cause complications with fertility later (a small percentage of the women who have the LEEP done). But if you don't have to undergo a procedure, why put yourself in that position at all?

I also think your doctor was being very unprofessional and I would urge you to switch doctors, IMO. This is not a situation to be taken lightly as this is your health and your body and they obviously were not forthcoming AT ALL in giving you the information you need!

Remember that you WILL BE FINE. Remember that this happens and has happened since time immemorial to MANY, MANY women all over the world and that luckily, we have caught this dysplasia in its earlier stages. If you do just have CIN 1/mild dysplasia, definitely hold off on the LEEP (which is what the doctor should tell you, but you never know what some doctor's protocol is). Also remember that these surgical procedures do not CURE us from HPV, they merely remove the physical manifestation of it (dysplasia). There is always a possibility of it recurring so that's why it's important to BOOST your immune system with supplements (like folic acid) and eat a healthier diet and exercise. If you have the funds available, I'd urge you to see a naturopathic doctor or nutritionist to help boost your immune system so that will help suppress the HPV strain that you have.

I hope this helps! Keep us updated on your situation-- you will be fine! Keeping you in my thoughts

gorgikin · 06-06-2007, 02:09 PM

I concur with you perhaps looking into getting a new doctor if possible, having all your records transferred, then consulting with them on your results & to discuss treatment options. I also think it would be benefitial for you to know what type or types of HPV you have. Only certain strains are considered to be high risk. It is normal for there to sometimes be a discrepancy from the pap smear to the biopsy. It does happen often, it did in my case.

When my initial pap came back abnormal I was told I likely have HPV. At that time, I had never even heard of it. The pap diagnosis listed the cause of the abnormal pap as being low grade lesions. I was told I needed to go in for a colposcopy at which time they would do a biopsy to confirm. I asked a series of questions at the time, and was told I would most likely have cryotherapy performed. After receiving the results, it was determined I had CIN II-III. The doctor then told me, we will have to perform LEEP for this grade of lesions. I went in the next week, and to be honest aside from my heart rate being raised, I left feeling like I just had another pap done is all. Now I did have some foul discharge, and a bit of discomfort, but overall it wasn't so bad. The procedure also gives you a final diagnosis on the grade of the lesion, in my case it was CIN III.

LEEP does have some benefits over cryotherapy as well. With cryo they are simply freezing the bad cells which then shed so healthy ones can come back. The problem with this is there is no tissue sample that can be sent off for further analysis. Depending on the grade of CIN, and the type of HPV you have, this step can be of great importance to ensure the abnormal cells are only on the surface, and have not invaded deeper into the tissue. Also, the process of cryo can make it more difficult in the future to find problematic cells. If given the option to have cryo or LEEP, I personally would choose LEEP.

I recommend reading as much as you can on cervical dysplasia, and HPV. Even if it currently does not apply to you, it helps to understand everything from A-Z. That way, when you do get results you already have somewhat of an idea what is going on, and that way you will be better prepared in terms of what questions you need to ask your doctor.

I am sorry to hear you are going through this, I hope you have a good support system at home. I can remember how lost & confused I was when the whole thing started. I didn't know anyone who had experienced it personally, so it was hard to get the emotional support I needed to weather it. So I burried my nose in the books, and it helped TREMENDOUSLY. I found the reason I was so scared was noone was sitting me down to explain everything to me. Had they done so, I would have found out much earlier how common HPV & dysplasia is, and that I really had nothing to be scared of. I am now thankful I was on top of my paps & caught it early enough. The road is always going to be bumpy, it still is for me two years down it, but knowing and understanding what you have is the first step in dealing with it. There are many people on this site with personal experience which I hope helps you, but because each case is different I highly recommend you don't make a self- diagnosis based on what someone else experiences. The next step for you sounds like getting a doctor who has more experience in handling patients with cervical dysplasia.

I wish you the best of luck! Keep your head up, you can handle this!!