refusing anymore surgeries

I was diagnosed with VIN2, had a partial vulvectomy. Doc said they got it all. Within one year it was back, had surgery again, this time it was VIN3.

Now, one year later, it's back again. I see my gyno oncologist March 18th, I am going to refuse another surgery. If I had children, I'd fight it tooth and nail.

Can anyone tell me if VIN keeps coming back with them? Also, what they did?

I need to know if anyone is in "the same boat?" I would really like any input that you can give.

Thank you,

Debra

Maybe I should add an addendum to my post. I had 2 meningiomas removed from the base of my brain, Bilateral mastectomy / reconstruction. Oral surgery for a lump on my hard palette. Sinus surgery. C-section, and my daughter died at 7 weeks of age. I was with my daughter, mom, dad, and sister when they passed. I have seen what chemo and radiation does, mom, dad, and sis passed even with the treatment. I was so in awe of what "troopers" they were. With VIN, I never had any symptoms. Now I do have the iching. With the 2 previous surgeries, the margins were clear. With each surgery the VIN has progressed. My question is why has it returned so fast (one year each time.) I have heard that without treatment you can live up to 5 years. I also have fibromyalgia, and am so tired of pain. I suppose what scares me the most is having surgery every year, and it still returns. I have began cleaning out my home of nic nacs and such so my brothers will not have to go through all my stuff. I'm putting names on some things that I want to go to certain people. How does one prepare for ones own death? I know this may sound negative to some, but doesn't one have the right to say, "No more, I'm done?" I am not afraid of death, but am afraid of so many surgeries.

Thank you for listening, and any info anyone can give is welcomed.

Debra 

On 3/5/2009 debra2 wrote:

I was diagnosed with VIN2, had a partial vulvectomy. Doc said they got it all. Within one year it was back, had surgery again, this time it was VIN3.

Now, one year later, it's back again. I see my gyno oncologist March 18th, I am going to refuse another surgery. If I had children, I'd fight it tooth and nail.

Can anyone tell me if VIN keeps coming back with them? Also, what they did?

I need to know if anyone is in "the same boat?" I would really like any input that you can give.

Thank you,

Debra

i had a partial vulvectomy done in 2005 and have had 5 more surgerys since then , it keeps coming back as VIN111 , they are seting up my next surgery now , they suck so bad :(  But i asked the doctor what if I didnt want to have any more surgerys and he asked me if I wanted to die because thats what can happen, if it not taken care of , and I dont want to die , I have a granddaughter thats 2 and one on the way that I want to see , so I feel I have no cloise but to let them do what they feel is needed.

But know that you are not alone . feel free to email me , if you would like .

lov,

connie

On 3/26/2009 gypsy1 wrote:

 

On 3/5/2009 debra2 wrote:

I was diagnosed with VIN2, had a partial vulvectomy. Doc said they got it all. Within one year it was back, had surgery again, this time it was VIN3.

Now, one year later, it's back again. I see my gyno oncologist March 18th, I am going to refuse another surgery. If I had children, I'd fight it tooth and nail.

Can anyone tell me if VIN keeps coming back with them? Also, what they did?

I need to know if anyone is in "the same boat?" I would really like any input that you can give.

Thank you,

Debra

Ci had a partial vulvectomy done in 2005 and have had 5 more surgerys since then , it keeps coming back as VIN111 , they are seting up my next surgery now , they suck so bad :(  But i asked the doctor what if I didnt want to have any more surgerys and he asked me if I wanted to die because thats what can happen, if it not taken care of , and I dont want to die , I have a granddaughter thats 2 and one on the way that I want to see , so I feel I have no cloise but to let them do what they feel is needed.

But know that you are not alone . feel free to email me , if you would like .

lov,

connie

Connie,

Thank you for sharing with me. Since my post, I have seen my gyno oncologist again. I was right, it's back. He said it looks moderate at this time and I'll see him again in 3 mos.

If I had children and grandchildren, I would have more surgeries. I read on here of a woman that has had 10 surgeries, I just don't want that, I have had 2 tumors removed from the base of my brain, bilateral mastectomy/w reconstruction, then another for scar revision, Those were just some of my surgeries. Then of course this VIN thing.

Thank you for telling me that I'm not alone. I think with this condition, it sure makes me feel alone. Some days I just have to unplug my phone and stay home. When I'm feeling more "upbeat", I come out of this "cocoon" that I have made for myself. I don't want to talk to my friends in detail about how I feel, so I get it out by writing in a journal. I found that I needed to do this when one night my fiance and I were playing Scabble. He suddenly began to wail, he started crying so hard telling me he didn't know how to live without me. I knew then I shouldn't talk about this subject too much to him. He is such a wonderful man. He told me that all my scars weren't ugly to him, he said "Baby, those are just roadmaps of your life, it's not where you are going, it's just where you have been." Now, just how sweet was that???

Connie, I'm so sorry you are dealing with another surgery, maybe this will be the last one for you. I never had any symtoms until now. Did you have symptoms? Please let me know when you find out your surgery date. How is your family handling your illness? How are you handling it? Also, please know that if you need to talk, I'll be here for you too.

Luv ya too,

Debra

Hi,I do not see any e-mail adress to where I could write to you personally.please read my daughter story. If your VIN is caused by HPV then you should be able to treat it with the DIM,like my daughter his doing. I can't garantee you that it will completely disappear because we have not finished the DIM yet,but from the results we are having we think it will be gone by the end of the treatment.

 Please don't give up!  I know what you are going through,of course second hand,since this is happened to my dauhghter,but believe me it hurts me worse just because it is my daughter and not me.

Lina

On 5/5/2009 sofiaroma wrote:

Hi,I do not see any e-mail adress to where I could write to you personally.please read my daughter story. If your VIN is caused by HPV then you should be able to treat it with the DIM,like my daughter his doing. I can't garantee you that it will completely disappear because we have not finished the DIM yet,but from the results we are having we think it will be gone by the end of the treatment.

 Please don't give up!  I know what you are going through,of course second hand,since this is happened to my dauhghter,but believe me it hurts me worse just because it is my daughter and not me.

 

Lina

Hi Lina,

I'm sorry to hear that your daughter also has this. I don't know of DIM, would you mind explaining it to me?

Of course you would rather have VIN instead of your daughter, I understand how it hurts you. That's what moms are about.

Hang in there, and thank you so very much for your reply,

Debra

hi please explain what this DIM treatment is? I cannot use this Aldara cream atleast not while i have to go to work its too painful with all the rawness and sores. I never heard about this VIN till i was diagonised last yr. I have had 3 biopsies since then seems like everytime i go in for a follow up I get cut.

Now i tried using the aldara but on the 3rd application i was so sore and blistery I couldnt go to work. and i cannot be out of work.

So if there is another option besides the Aldara and biopsies please tell.

Cannot believe how many of us woman young and older have this.