Had my surgery on the 10th

I had my surgery to remove stage 3 VIN on the 10th of June. All went as planned and now I await my follow up appt on the 17th to see how everything is comming along and the results of the pathology report as to if he was able to get it all or not. I'm feeling ok but very sore at times. I think the worst of it all is not being able to do anything until my follow up appt. I feel like im in a slump and becomming depressed through it all. I'm scared to death that patho will come back that he missed some. It's driving me nuts.  This whole ordeal is so trying on your mind and body. I have to say that I feel like part of me is missing now. This may sound sorta in depth but when he did the surgery and removed part of the vulva the vaginal opening is so small now I feel like I will never have a normal sex life again. Has anyone else felt this way?  I know the doc said that there would be some slight deformation but I thought he meant on the outside. Maybe I'm just worrying to much but this whole deal has me a wreck..... I guess I shouldn't be so concerned but I am.... I'm just hoping that the appt on wed comes up good.... maybe that is my main underlying worry..

hi ive just this minute joined this site and seen your message, im so sorry you are going through this and pray that your results come back good. i was diagnosed 4 yrs ago with vin111 wide excision and it didnt work for me. my surgeon then retired and i went under another one who was neither use nor ornament, i was found to have more white patches along with the severe itching and was in alot of pain in the perinium but the surgeon discharged me, i was very upset about the whole thing and my dr sent me to another surgeon whos main interest was vulval cancers under him ive had 4 lots of surgery and have nothing at all my lips and everything have now gone. i had a punch biopsy and was found to have gone to vulval cancer and was given a chemo cream which i can onlydescribe as torture, that had to stop after a week i would rather have surgery every day than go through that again. ive just had my 5th surgery in april and ive been doing well since, ive had 1 or 2 bouts of itching and pain but not as severe, i go back on the 20th july to see how im doing. i feel very down at times over the treatment it seems like they are just experimenting with you as they dont really know what to do.i have been told if it has not all been caught this time i will probably start chemo which is pointless as ive read and read that it doesnt seem to work for this particular type of cancer, and he also said over total vulvectomy which he and every other surgeon does not really like to do only as a last resort. we have not been able to have sex for 4 yrs now and im to scared to even try besides that i feel freaky im not whole anymore and what made me a woman has gone forever. tonight im going swimming if it irritates me then obviously i know i cant go again so im hoping that i will be ok. i do feel lucky though that i have 4 brilliant kids and 4 gorgeous grandchildren. a husband who will be by my side no matter what i go through and doesnt think about the sex side of things now, also when i do get down and that can be often i think how lucky i am that my cancer is going to stay in the 1 place and not spread elsewhere. i dont know how old you are or where you are from but i wish you luck and pray for you. im 48 a mum, a wife and a nan, i have everything to fight for and fight i will. take care and hugs for you, Denni

Hey Denni thanks so much for replying to this message I posted. didn't think anyone was gonna. My results of the post op came back ok. The cancer was totally removed by the partial vulvectomy. I'm sitting here in agony and the doc says all is healing ok and it just takes time since it's in such a sensetive area. I'm so tired of the pain already. I'm 36 yeras old. I had my first bout of vin in the most minor stage when i was in my early 20's. I had laser surgery for it. Then i went through a preterm labor at 28 weeks and they said it was from having what they called a bi coronate(2 chamered) uterus. He survived but has some mental health disorders. When I was 26 i had a tubal ligation. and by the time i was 28 I ended up with a total hysterectomy due to severe endometriosis. This latest bout of vin3 was found after having the biopsy of what i thought was a cyst. I would never wish this on anyone and only those of you that have gone through it can understand the feelings and depression you feel. I feel terrible when I read all you went through. It makes mine look so small in comparison. I truely hope your doing ok right now. As for the sex part of it all my hubby still rides my butt joking around about wanting the sex once I'm healed but i don't know if I can ever do it or if I'll ever have the  desire. I feel so crappy about it all.......  It's life altering in so many ways. I would love to talk with you more if your interested. I can give you my email...... just let me know. I just hope the recouptime for this is quick. I'm so sick of hurting all the time..........

omg im so happy for you, the news is just brilliant, even though your in pain you must feel like a huge weight has been lifted? i cant believe what you have gone through since your 20s, with your son being early , hysterectomy and everything sounds like youve had a raw deal. i take by reading your messages you are in the us? you must be to get results back so quick, im in the uk. when i have my ops and punch biopsies i wait up to 7 weeks for my return visits to the hospital. our health service is getting worse. no-one knows the pain of this like you say i can think of nothing worse you hear people moaning about a headache or a cold everyday , sometimes i want to rant ;ill swap with you just for one day;.have you had anyone to speak to about all this , the specialist nurse or a councillor? i was offered but being all brave i said no im gonna be fine but turned out i was wrong i kept everything to myself and ended up having a breakdown 3 yrs ago the morning i was due in for a major op so it had to be postponed for a few months lol till the tablets worked. but im pretty good at going in for surgery now as long as im 1st on the day list and i have valium lol. the pain does ease gradually though to you it seems never ending, and you must have a loving husband if he can laugh about it, thats mostly how i get through by laughing, just remember no-one can see what youve had done and we are no less the women we were before all this started theres just abit less of us when we step on the scales lol. im thinking from your posts that was in the vulva and hadnt reached the perinium or your back passage? mine has reached that far i had a groweth removed this time from my back passage luckily they have got it all away but its still as far as my perinium, thats the worst when the itching starts its just so tender there, i had a look at my self last night and ive found a white patch just at the entrance to my uretha ive had a weird feelinf for a week or so now when i wee and it gets to the entrance i put it down to age lol but last night saw that it isnt, so today ive been a bit scared and havnt told anyone including my hubby i need to deal with the extra load myself 1st. thats why my reply has tried to be light hearted in a way to get away from it. oh god im really so happy bout your result you have made my night, well day its half past 12 now i best go get some sleep lol, i dont even know your name but im made up to have spoke to you it helps so much when you can talk to someone who knows whats happening to you and themself i have a brilliant friend in dakota who i can vent with and she never says dont worry she just helps so much, dont worry how many people have said that to you i wonder? if theres anything you want to chat about or ask or anything i will be here my email is

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 ifyour sad or angry or just chat please feel free i dont mind at all, take care and hope you are pain free very soon lol if hubby is doing that hugs Denni xxxxxxxxxxxxxxx ps leave your name to xxxx

I was wondering if either of you used Aldara cream? I cannot use this stuff it makes me sore/red/swollen and tired also felt like i had the flu the 2 weeks i tried it. i told doctor by the 3rd application the pain and sore was as bad as having surgery. I keep reading about this DIM supplement but cannot find it in any of my drugstores. Hope you all get well soon and how come none of us heard about this VIN till now? Next month I have to go be rechecked i have had 3 biopsies so far and my oncologist thought i should use the Aldara to reduce going under the knife again i only wish i could use it but i cant function at work when im on it. As far as sex i thought it was all in my head but i really could care less if i have it or not of course my husband doesnt understand. and when we do have intercourse it is painful and im not sure why its been 8 weeks since my last biopsy you would think i was all healed up. all i know is this stinks im 49 years young :) and we should be all enjoying life since its so damn short but dealing with this it still makes me feel like im depressed all the time because i know i will proberly have to be cut again since i couldnt use the Aldara cream. im just glad im not alone and some girls are getting this in there 20's unbelievable. good luck to you guys.

hi to you, so sorry to hear that you are suffering with the same thing as we are. jan has never used aldara but i have and the only way i can explain it is to say if i was being tortured that is what i would expect it to be like. ive had 5 lots of surgery 2 for vin and 3 for cancer i have another lot in july and then another bout of chemo after it, it just keeps coming back. wow as for sex ive never even thought of it for 4 years i know the pain i would go thru and im only a few months younger than you are at 48, im lucky that my husband has been amazing through all of this and really is my rock he fully understands what i feel like and would never even ask me to do anything. you need to get some information for your husband to read he need to be there for you thru all of this, when where you found to have this and what exactly is it you have? your life isnt over its awful i know and we get down and rant and rave but as long as we know theres someone else here to speak to and help us we can all get thru this, where are you and whats your name. take care and please reply denise

do a web search for:  where to purchase Diindolylmethane (DIM).  Good luck and hang in there.  Please keep us posted.

 

On 6/15/2009 prkiluci wrote:

I had my surgery to remove stage 3 VIN on the 10th of June. All went as planned and now I await my follow up appt on the 17th to see how everything is comming along and the results of the pathology report as to if he was able to get it all or not. I'm feeling ok but very sore at times. I think the worst of it all is not being able to do anything until my follow up appt. I feel like im in a slump and becomming depressed through it all. I'm scared to death that patho will come back that he missed some. It's driving me nuts.  This whole ordeal is so trying on your mind and body. I have to say that I feel like part of me is missing now. This may sound sorta in depth but when he did the surgery and removed part of the vulva the vaginal opening is so small now I feel like I will never have a normal sex life again. Has anyone else felt this way?  I know the doc said that there would be some slight deformation but I thought he meant on the outside. Maybe I'm just worrying to much but this whole deal has me a wreck..... I guess I shouldn't be so concerned but I am.... I'm just hoping that the appt on wed comes up good.... maybe that is my main underlying worry..

Hi am in my 4th year of surgeries, laser and creams, I just had  a checkup yesterday and things look fine again, so I go back in 6 mths, everytime I go to the 4 or 6 months it seems to come back then I do the aldara, go back after 6 weeks everything is fine. my I have gotten such atrophy from the creams, I have to use estrogen pills I inject into the vagina to build up the skin, as it is so thin and cuts easily with checkups and intercourse. Well, things could be worse, as least you don't die from vulvar cancer, just keep plugging along, things do get better, just keep on top of things.

karenthekat

 

 

 

do you live in the usa?  I am curious of the different medical treatments that are being done.

 

On 7/13/2009 Carol123 wrote:

do you live in the usa?  I am curious of the different medical treatments that are being done.

I actually live in New Hampshire and I was sent to one of the best gyn onc for vulvar cancer. go the the internet and put in Dr Arlan Fuller, he was at mass general for 30 or so years now is in winchester ma and is in the process of opening a center for gyn cancers. he is wonderful and his nurse of 25 years is absolutely the best, I am under her care now as she takes the cases as they are on the mend, they work together so they consult each other all of the time.  Go to the internet his reputation is unbelievable, in fact all of the drs in NH etc send you right to him if there is a problem. they don't even handle the cases on their own.,

Karen the Kat