stage 4 dysplastic cells still there after LEEP, need second opinion

Greetings everyone.  Been lurking here since the beginning of my ordeal and you all have been so supportive of one another, and in turn, reading your information and responses have helped me a great deal.

 In short, I will be 25 this month, had my first abnormal pap in Jan.  Had 2 colpos and a biopsy which showed severe dysplasia.  Had my Leep a week ago today (thursday) and got my results yesterday showing cells extending beyond margins and still severe dysplasia.  No HPV dna has been detected. 

 My question(s) are this:

1.) My doctor said "if it was moderate or not severe we would watch it but this is too scary to watch, let's wait 4 months for you to heal and we'll take another look via colposcopy"...to me this seems too long...

2.) I read again and again to get a hold of your own lab reports on here.  I am in the process of doing so and finding a specialist.  However, I have no idea if waiting 4 months is a good idea.  I will go to a consultation before then with someone else but I need to be more educated.  My doctor seems flippant about it, what I read on reputable sites seems serious, my family and friends say not to worry they know someone who has been throug this and they were fine....but I am 25, not sure what I am looking at, what my risks are for sure, and what all this means....if it is severe and extends beyond margins (though I don't know if it is deep or wide) could this mean it is behind my cervix or in my vaginal wall possibly? Is stage 4 severe dysplasia the same as pre-invasive cancer? Has anyone else been in this same position? 

 I know it is hard for any woman at any age to mess with these things...I am young, unmarried, and have no children or plans to have any soon, but I can see a familly in my future if my life works out this way...i am scared of this meaning more aggressive measures that will affect my fertility and sexuality.  I am a sexually active female who is close to her body and womanhood, and I am feeling so disconnected and down.  I dont' know how worried I should be, what I might be looking at, and I need honest straight answers which I know a doctor cannot give me right now, but at least some kind of direction or something.  I feel like no one unerstands and I dont' want to feel sorry for myself but I do want to be proactive. 

 Thank you in advance, and I hope as I progress and learn, I may be able to ease others' fears and concerns or offer guidance as you all have done for me. 

dharma34 -

 I'm sorry to know about your troubles. I have just a few thoughts to share...At 23 I was diagnosed with dysplasia and was biopsied. Since that initial exposure to dysplasia I have had multiple LEEP procedures, freezings, etc.

After nearly 18 years I'm still struggling with not normal pap results and colposcopy procedures. What I can tell you is this, keep digging until you get the answers you want. It's disheartening to hear that your doctor is flippant. If your health care allows for it, interview others to find a fit for you. I do have to say that from what I've read/learned he may not be far off from being correct that w/in 4 mo you could be healed and your body corrected the dysplasia as the body does take care of itself rather well.

Congratulations on being your own advocate. Keep asking questions until you find a solution that fits you.

I am sorry to hear about the 18 years of struggle! I can't imagine what that must be like...I didn't even think I could make it through the first LEEP.... Man I hope your situation improves someday for you and that that someday is soon.  But your strength gives me strength.

 I think I was unclear in my first post though.  My doctor wanted me to heal enough so she can see my cervix without all the scabbing and scarring to get a better look at the picture.  That is why I cannot believe the 4 month wait for that.  She never suggested I would heal on my own and stated the need for another procedure as soon as she could get a clearer picture.

I made an appointment for a consultation with a specialist today, unfortunately that will be in a month but it is better than waiting 4 months. Made me feel like I had a bit of control over the situation in the fact that I was able to take one step at least.

Did your doctor mention if the endocervical glands are involved? Check for that when you get your lab reports. Also check to see exactly are the positive margins are located. It doesn't sound like your current doctor is educating you very well, so you might want to consider getting a different doctor.

Out of curiosity, is your consultantation with a GYN/ONC? If not, please get a referral to one. If you are concerned about waiting too long, from personal experience, if you tell the office it's urgent, they will make room for you.

I definitely hope everything turns out well for you.

Thank you Herenow for the advice.  Had to go back today because I haven't stopped bleeding....the cauterization process took 4 tries chemically and the pain was through the roof...if i don't stop before thursday she wants me back for a heat cauterization...i am losing faith here.

 Got my labs today though...does not say where the margins are located. Does say endocervical glands involved, did the curettage after the LEEP. not sure what it means if the LEEP endocervical cells are severe but the curettage shows benign. Here is word for word:

Specimines submitted: A: LEEP cervical biopsy B: Endocercial curettings

A: Uterine cervix, LEEP cone biopsy:

-Severe dysplacia (CIN III/CIS, high grade SIL)

- The Exocervical margin of excision is involved with low grade dysplasia.

-The Endocervical margin of excision is involved with high grade dysplasia

B: Uterine cervix; endocervical curettings:

-Fragments of benign endocervical epithelium

I'm sorry I didn't get to this until now. But how are you feeling? Did the bleeding stop? Did your doctor use a vagi-pak to stop the bleeding or use stitches? I truly hope you're feeling better.

I am not trying to frighten you, but I think you need to be looked at by a specialist, just to be on the safe side. With positive margins in the endocervical glands at CIS, a second opinion from a GYN/ONC will help. Please understand I respect your choices, but my own feeling is if I had positive margins, I'd want to be further evaluated. At the most, it will save your life. At the least, it will put your mind at ease that you're going to be fine. I realize the ECC says "benign", but it seems there is a bit of conflicting information. A second set of eyes, from a specialist, can clarify all of this for you.

My apologies. In rereading this, I realized I wrote "endocervical glands" instead of "endervical canal." I still think your condition warrants a second set of eyes. But you can have that doctor check to be sure it's not in the endocervical glands. I'm glad you are seeing a specialist.

Thank you Herenow,

 You were right, i am the one who had the typo for endocervical = endervical

 The conflicting information does concern/confuse me.  I have an appointment with a specialist coming up.

I have not stopped bleeding.. It seems to be a slow leak but after all my doc has done, I don't want to go back to her.  I feel frustrated with her.  She used the yellow mon-something solution and also silver nitrate.  I am supposed to go in tomorrow if i am still bleeding which I am but it is only a little today.  I think I will wait to see if it stops on its own.  She hurt me too badly last time, and I am not willing to go back into that if this bleeding is not horriby worrisome.

I had the same thing as you for 10 years, pap every 6 months then every 3. Went and seen another doctor told him my story and within weeks I was getting a hystrotomy. My are went from the size of a pencil eraser in year one which I did a freezing, then 2 years later nickle size did the leep. then kept growing but watching it. Next thing you know it was the size of half dollar. New doctor was pissed that they hadn't done anything else to help me, then he steped in said the wait was not worth it turning to full blown cancer....please seek other Doctors!!!!