Severe Dysplasia caused from HPV

I had an abnormal pap on 10/08, which lead to my 3rd colposcopy in 12 1/2 yrs (my 1st colposcopy showed mild dysplasia, the 2nd was 7 yrs ago and showed mild/moderate dysplasia - I was pregnant & they only did the colposcopy this time). This 3rd biopsy came back with moderate and severe dysplasia which lead to a LEEP procedure. My new doc (my old doc retired) said that we wanted the pathology results to say 'negative boundaries' which would mean they probably got it all and we would continue with 4 month check ups. If the results were 'positive boundaries' then she would do a total hysterectomy (uterus & cervix removal). I talked to the triage nurse who said the boundaries came back as positive but my chart was noted that the doc thinks she took care of the remaining dysplasia during cauterization. On my mothers side alone we have lost 2 people to cancer (my grandma-breast @ 39 yrs, my uncle-pancreas, liver @ 47), 1 person who had a full hysterectomy due to tumor on her uterus (Aunt @ 57), and 1 who is going thru her 2nd round of chemo do to recurring cancer. This has been over 12 yrs in the making & comes back worse each time. My fear is that it may be gone now but come back in 7 years when I'm nearly 40 & it will be harder to get thru a hysterectomy. I have 4 boys & had a tubal about 4 1/2 yrs ago. I don't 'want' a hysterectomy, but I REALLY don't want cancer. I am going for a hysterectomy consult with my doc Thursday, but could use some input from people I'm not related to or know. The doc is wanting to hold off for 4 months and for me to get re-papped and see what happens. I think we are putting off the inevitable.
Please help! :}

By lisawjs
Posted November 7, 2008 at 5:31 pm
Report post

I also had another question. My doc said she didn't need to see me again until my four month check up but everywhere I read I hear the docs see the patients for a post-LEEP check up about 2-4 weeks after the procedure? Should I be concerned that my doc didn't ask me to come back for a post-op? It has been just over a week since my LEEP and I am still having discharge (coffee grind junk & liquid light coffee color stuff). I'm not sure if the odor is from wearing pads all the time or what, but there is a slight odor. I think I'm just paranoid with this time the dysplasia being severe, and the positive boundaries from the second biopsy being moderate...its just frustrating...ugh!!!

By flowershoplady
Posted November 7, 2008 at 6:58 pm
Report post

hi, lisawjs. the discharge post leep may last for several weeks, even up to 4 weeks. if you develop a fever or have excessive bleeding, those would be signs of infection. and some odor is normal, but a very strong persistent odor could indicate a problem. don't hesitate to ask your doctor any questions....that's what they're there for. hopefully you won't need a hysterectomy. it's major surgery and still won't guarantee that you won't have future problems with dysplasia/cancer. please have a second opinion before you go forward with this major surgery with many risks and a major recovery. it's unusual but not rare for a women with recurring or persistent cervical dysplasia to have vaginal dysplasia. you may want to find out whether you're currently testing positive for hpv....the longer the hpv infection is active, the higher the risk for dysplasia/cancer. you may want to try to clear the hpv infection by not smoking, eating good for you veggies (including cruciferous vegetables which contain DIM - or you can take a DIM supplement), getting plenty of sleep, reducing stress, avoiding infection/irritation (avoiding tampons, using condoms). let us know how you're doing!

By corellin
Posted November 8, 2008 at 10:11 am
Report post

As flowershoplady suggested, it would be helpful to know whether you're testing positive for HPV. A negative HPV test is a good indication that your body has cleared the active infection, which is the source of dysplasia. Often, HPV will clear after treatment for dysplasia (such as the LEEP you had), since much of the HPV is removed with the procedure and viral load is reduced, increasing your body's chance of clearing the infection.

By jrsygrl
Posted November 8, 2008 at 1:42 pm
Report post

I took had severe and a LEEP with no clear margins. I went to a Cervical Cancer Specialist. He told me not to get more cut out bc it may of gotten burned off or you have a 75% chance of it going away on its own. He told me that I should not do the 3-4 mo follow up but 6 months. You can actually get a false reading if you go after 3 months.

By lisawjs
Posted November 8, 2008 at 11:31 pm
Report post

Thanks everyone, I will see the doc on Thursday and keep you all posted. I could try the 'health' approach but I'm not sure how much healthier I could go as opposed to what I'm doing now. I have never smoked so that is good. I don't eat a lot of fried foods and I love my veggies. The stress thing is a little harder to delete...I do have four boys and they can get quite rowdy. My hubby and I have been separated for over a year because of alcohol/pills (on his side) and he is getting ready to go to rehab. My company has made cutbacks and we are 'absorbing' the positions as they are deleted. This is just one more thing that I don't want to deal with, especially right now. I'm not sure if the HPV infection is active or what they even means, but will be sure to ask the doc about it. I am always the 'happy, smiling' person people love to be around and I have an awesome support base between my family, Church and life long friends... but sometimes its hard to 'keep on smiling'. Thanks again...

By lisawjs
Posted November 14, 2008 at 9:56 am
Report post

UPDATE:

I talked to my doctor yesterday afternoon and she said the nurse was misleading. She said that she would almost guarantee my dysplasia isn't gone and will most likely return and keep returning. She recommends the hysterectomy. I should have it done before the end of the year. I'm nervous about the surgery but I'm more relieved than anything.

By flowershoplady
Posted November 14, 2008 at 5:59 pm
Report post

lisawjs, did you find out whether you still have an active hpv infection? that's a very good indicator to pay attention to.

and, before you have a hysterectomy, please give it lots of thought and get a second opinion - that's always recommended before you have major surgery. there is a significant recovery after a hysterectomy as well as many risks, some major and some more subtle but still with significant impact. you may want to talk with your doctor about whether he/she does any preventive steps during the surgery to prevent prolapse (such as culdoplasty).

and, remember that having a hysterectomy will not necessarily get rid of the hp virus; you will still need to continue with your paps and hpv testing to check on your vaginal health. vaginal dysplasia is uncommon, but it's not rare. as with cervical dysplasia/cancer, early detection is very important.

in addition, surgical menopause is something you need to be prepared for, even if you keep your ovaries, because some women go into ovarian failure after their uterus is removed, even with the ovaries still in place.

so, lots of things to think about! many women here have had hysterectomies, and if you have questions, don't hesitate to ask.

By corellin
Posted November 15, 2008 at 11:04 am
Report post

I agree with its_my_goliath. Definitely get that second opinion from a GYN oncologist who's most experienced and can give you your options.

lisawjs -- it's not surprising that the dysplasia has recurred off and on since you've never (until now) been treated. The recurrence means that you've probably been testing positive all this time for HPV (or would have, if the test had been available). A LEEP procedure very often results in clearance of an active HPV infection unless the doctor didn't remove all the dysplasia (unclear margins) or if your body has an active infection in another spot (maybe in the vagina that's migrating back to the cervix). So it seems to me that there's value in having an HPV test and then possibly having another procedure to try to clear the margins. If you eventually test negative for HPV, then you have a vastly reduced chance of a recurrence.

By lisawjs
Posted November 17, 2008 at 3:31 pm
Report post

Wow... this is all a lot to ponder. I do have an extensive family history of cancer and both the doctor and I agreed that the hysterectomy is the best thing. Recently I have suffered from severe bleeding from my LEEP site (I lost a lot of blood and was just treated today for this). I am very good about keeping my annuals and know that I still will need to keep them. I have been made abundantly aware of the possible side-effects by my doctor and also by many family members & friends who have had this procedure done already and they too feel it would be best considering all of the trouble I have been having. With four boys to care for, having the surgery poses less risks then ending up with cancer which is highly likely considering the direct line of it on my Mother's side of my family. When my LEEP was done my doc said the lesian was larger than she thought and she took 3 sections off. The boundaries were all positive with a stage 2. She said I could wait four months and retest but it would most likely be back since it grew so fast this time (I was normal last year...). i can not go through the bleeding I had Friday night, it was horrible!!! I would fill a pad in 10 minutes easy and passing clots the size of lemons!!! The ER doc thought I was having a miscarriage...but it was confirmed that I was not pregnant and the bleeding was coming from my cervix. I know that having the hysterectomy will not get rid of all, but it will take care of the immediate problem and I have asked God for a clear sign and He has given it to me, so I am confident I doing what is necessary. I have many supportive people around me and I thank you all for your thoughts as well.

Welcome to Inspire!

11 replies

Add to the discussion

NCCC on Twitter

Group leaders

You