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Help me,so many questions!!!! Help me,so many questions!!!!

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Unread 10-05-2003, 12:50 PM
Help me,so many questions!!!!

I have posted most about me in the general forum I belive anyway with my diagnosis I was directed in here.So I hope I can fine some answers,

Im 31 years old and I have had endometriosis for about 13years I had to laporoscopies the latest was 6yrs ago.However Just when I have learned to live with this disease and know that it isnt in my head im ok!!!
Now for over the last year almost coming on 2,I had a bad pap with mild dysplasia and 3 months later I had another one with mild,followed by a colposcopy.then I had another pap in Feb and it was found that I had mild and moderate dysplasia.I waited to get married and to get on my husbands insurance so I could go to my regular ob/gyn.So again I went through another pap and another colposcopy,and here i sit my doctor wants to do a cone biopsy which i had one done about 12 yrs ago,but cant remeber how the recovery was,and then i thought that he wanted to leave it as that.But then I cried in his office and told him that i cant live on this roller coaster anymore its not getting better and I feel like a human pin cushion and I cant have anymore children after having a tubal in 1996.So now my doc has come to the conclusion of doing the cone on oct 8th and do a hyster on Nov 19th,has anyone had these back to back surgeries and if so is the recover time harder then with just the hyst?Im pretty sure that he will do the abdominal way cause the last lap he did it was on my bladder and intestines.Also the reason for him to do the cone first is because of the one colposcopy from the one doc said it was negative for dysplasia for the in side of the cervix back in feb and his report came out negative so he said it could be that there is a diffrence in the lab,the other doc could have biopsied it away,or he just didnt get a biopsy from the right spot,My question is he said if following the cone if there is dysplasia on the inside i may have to have a radical hyster,im unclear of what that is? he also wants to try to save my ovaries if they are not full of endo due to the hormone and my age factor.any help with these questions will really help me,thanks in advance.
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Unread 10-05-2003, 12:53 PM
Help me,so many questions!!!!

oops the first docs was positive for dysplasia inside the cervix...Sorry for the confusion
Unread 10-05-2003, 01:53 PM
Help me,so many questions!!!!

Hi Destiney,

I'm so sorry that you are having to go through all this right now, it is a difficult process. But it helps to take it step by step.

About the cone biopsy and then the hyst., I've had two cones and both times were on a Friday. I was sore for a day or two but was back at work on Monday. So hopefully the recovery won't be too difficult for you; you should be pretty much healed up by the time of the hyst.

A radical hysterectomy is sometimes defined as when the uterus, the cervix, the upper part of the vagina, and supporting tissues are removed (including a sampling of lymph nodes), usually to make sure that no bad cells have traveled outside the uterus. I think the option to remove or keep the ovaries is still available though. Others here will definitely be able to help you a lot more with the specifics than I can!

Best of luck to you,

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Unread 10-05-2003, 03:14 PM
Help me,so many questions!!!!

I had my cone or LEEP last Nov. 12th. My hysterectomy was November 22nd. You need not worry too much about healing before the Hysterectomy because they would be taking the cervix out due to your dysplasia, and the cervix is what the cone is done on. I was glad my hysterectomy was scheduled so soon after I had my cancer diagnosis (LEEP path report), it was difficult walking around knowing that "disease" was inside of me. My staging was 1a for squamous cell, not at the point of needing radical hyst or radiation/chemo yet. If you have any questions you would like answered regading the cone or LEEP, feel free to PM me.
Unread 10-06-2003, 04:23 AM
Help me,so many questions!!!!

chicklet and peaches thanks for all the advice and the help i was looking for and it does explain alot
Unread 10-06-2003, 07:38 AM
Help me,so many questions!!!!

I am going to give my opinion -- though please take it for what it is - just that - my opinion. I just had a hysterectomy (uterus and cervix) on May 23. I had it due to years of horrible pain from endometrosis. My doc, too, wanted to leave the ovaries because of my age -- but I never got the pain relief from the hysterectomy -- and now - here I am -- some four months later -- with a large cyst (and quite painful) on my left ovary - four small ones on my right -- and going to see a gynecological oncologist tomorrow for surgery to have my ovaries removed. They are sending me there because of all the endometrial growth it will be hard to get my ovaries out -- but I must tell you - I am not looking forward to second major surgery (and neither is my employer). I would discuss all options with your doctor before your surgery -- Seems to me with endo leaving the ovaries doesn't work, because it still feeds the endo - but, of course, I am not a doctor.
Unread 10-06-2003, 12:07 PM
Help me,so many questions!!!!

thank you nashvlleparalega for your opinion and a good one at that i never did think that with my ovaries left in that the endo still can grow and most likley at a high rate of speed,so I will definently put that on my list of questions to ask god knows no one should go through a 2nd major surgery if they can prevent it the first time,and good luck and god bless you nash and hope that everything will turn out ok for you //hug
Unread 10-08-2003, 03:22 PM
Help me,so many questions!!!!


Just wanted to let you know that since June, I've had two colposcopies (unsuccessful) and one cone biopsy -- exactly four weeks ago. I felt pretty good after a few days, with some cramping for about 2 days and then discharge for about two weeks followed by my period that was heavier than usual. This was all done because of severe dysplasia detected at a routine pap (in June). The cone biopsy didn't remove all of the cells (as they do in 90% of the cases). And because of the location of the cells (at the deep end -- uterine side -- of the cone), growth rate (last pap was completely normal) and the recurrence from 16 years ago, my doctor and I have elected to go for the hysterectomy.

My doctor does not like to subject her patients to surgery more frequently than every 6 weeks especially since I am having a LAVH. As far as recovery from the cone, at 4 weeks I am still healing (my doctor's words from an internal exam a couple of days ago).

So the only inconvenience is having to deal with two different surgeries (I was under general anesthesia for cone), with obviously two very different recovery periods.

Oh yeah, and one more thing: finding out after the cone that I had 6 more weeks to wait to just end up having it all removed anyway.
Unread 10-08-2003, 05:52 PM
Help me,so many questions!!!!


I've seen you mention a couple of times that your colposcopy was unsuccessful. I'm not sure what you mean by that???

Most doctors do have their patients wait 6 weeks between a cone and a hysterectomy--there is apparently a lower rate of complications if you wait that long. It's nice to know that your doc is being very careful with your care--you must feel very comfortable with her.

Unread 10-11-2003, 06:14 PM
Help me,so many questions!!!!


Thank you for your story and im glad that im not alone here.3 days since my cone I have the cramping and the discharge and the constant urge of having to pee is this normal or could this be a start of an infection??? i dont have a fever or anything so im not to concerend as of yet,but is it just from the cone? and yes its very frustration to know that double surgery double the healing time just to know they will take it out anyway..thanks again janet and hope we can talk one on one sometime

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