vin iii

sibbyjaydee

mimi6464 said:

Imiqimod
Sibby, imiqimod is a topical chemo cream. It is a cell modifier, meaning it changes the structure of the cells (cancer) and how it the immune system reacts to attacking those cells. Because I biopsied for invasive squamous cell, after the first partial vulectomy, my resections (margins) biopsied as vin 3. This is why they did not go my my lymph nodes down there. After 2nd revision surgery, it is spreading like wild fire, so that's why they put me on the imiquimod for 6 months (72 treatments) rather than more cutting/laser. I never had lesions or warts. But yes even after 3 so far (tonight will be #4) it is a little tender, yet starting to itch. The lymph nodes under my arm and neck are screaming at me. My non functioning ovaries have all the sudden wanted to let me know they are still in my body, and I just have an overall ' funny feeling '. They say the 2 week mark is the marker for side effects.....yeah right!!!!

If Angle just had surgery and is only 5 days out, she most probably is spending alot of time in the bathroom. The time and the maintenance just to urinate is boggling. Sitting (rather than laying down) is done in small amounts.

Imiqimod
Eww Mimi.....I will difinetly pray that those will be your only side effects
I think I will inquire about the Imiqimod with my doctor on my next visit. Maybe it's something I should be looking into as well.

Keep us posted!

sibbyjaydee

angel7418 said:

Post-OP
Hello Sibby. I want to thank you for your prayers for me. I am doing ok. Still real sore and haven't been doing much other than laying around. The pain meds tore up my stomach just like I expected. Thank god I was prepared. Thanks for all the great tips. They helped a lot. I think going to the bathroom is the worst. Everyday I feel a little better. Just glad that it is over.
I am so sorry to hear about your post-op visit. This is just so unfair. If its not one thing, its another. As much as I want to have peace in my life cause it is over, it never seems to be over. As soon as I move on with my life, something else happens. I'm really trying to be strong and I sure hope that you are too. Faith is all that we have. I will be thinking about you so please keep me informed on how you are doing, as I will do the same. I don't go for my post-op appt til Nov. 8.

Yayy Angel you made it!! I was getting worried about you. Everyday you will feel better and better. Did you feel like the surgery and recovery was better than you had antisipated? I know that before my surgery I thought the recovery was going to be unbearable, it was not comfy by no means, but still was better than i thought it was going to be.
Post-op: wow...that's over a month after surgery. I guess they feel like they did a good job..lol

I had my breast biopsy yesterday and my PET/CT scan to check my lymphnodes and crotch cancer this morning. I will get my results back on Tuesday, so i'll be holding my breath until then.

Keep Strong girl...we will ALL get through this, it just might not be an easy ride.

Huggles!

angel7418

sibbyjaydee said:

Yayy Angel you made it!! I was getting worried about you. Everyday you will feel better and better. Did you feel like the surgery and recovery was better than you had antisipated? I know that before my surgery I thought the recovery was going to be unbearable, it was not comfy by no means, but still was better than i thought it was going to be.
Post-op: wow...that's over a month after surgery. I guess they feel like they did a good job..lol

I had my breast biopsy yesterday and my PET/CT scan to check my lymphnodes and crotch cancer this morning. I will get my results back on Tuesday, so i'll be holding my breath until then.

Keep Strong girl...we will ALL get through this, it just might not be an easy ride.

Huggles!

Day 11 Post-OP
Hey Sibby. Today is day 11 post-op. Wish I had good news for you. Things have been really rough for me. I have to tell you that this is probably the worst thing I have ever been through. I have been in a lot of discomfort from the surgery. I thought I would be back to work by now. Normally, I am a pretty tough cookie but this is really holding me back. I have been just laying around taking it easy and everything just keeps going downhill. I starting noticing that the incision didn't look right. Went in to see the doctor last Thursday. He told me that it was cancer but he got it all out and doesn't think I will need further treatment at this time. Thats good news. I have to go every 3 months for checkups to make sure it hasn't come back. He said that chances are very high for me that I will get it again. He said that everything looked ok. I don't think so. From Thursday to Friday it got worse. Went back to the doctors and my stitches are popping open. He said that it is starting to heal so he wouldn't restitch it back up. So now I have a open wound down there and it is very painful. More painful than when it was first done. I feel like I am going backwards instead of forwards. This really sucks. Using the bathroom is the worst of all. It burns so bad. They told me to soak in a sitz bath 3 times a day. I feel Like I live in the bathtub. Now I think that it is infected. I go back tomorrow to get rechecked. I know it is infected cause it is all swollen again and it is leaking yellow. I just can't win. I just want this to heal up so I can move on. It has been so emotionally draining. I will keep you informed.

Please keep me informed on your results. I have really been thinking about you. I have been praying for you also. I hope that all your results come back good. You keep strong too.

Groovymama

angel7418 said:

Day 11 Post-OP
Hey Sibby. Today is day 11 post-op. Wish I had good news for you. Things have been really rough for me. I have to tell you that this is probably the worst thing I have ever been through. I have been in a lot of discomfort from the surgery. I thought I would be back to work by now. Normally, I am a pretty tough cookie but this is really holding me back. I have been just laying around taking it easy and everything just keeps going downhill. I starting noticing that the incision didn't look right. Went in to see the doctor last Thursday. He told me that it was cancer but he got it all out and doesn't think I will need further treatment at this time. Thats good news. I have to go every 3 months for checkups to make sure it hasn't come back. He said that chances are very high for me that I will get it again. He said that everything looked ok. I don't think so. From Thursday to Friday it got worse. Went back to the doctors and my stitches are popping open. He said that it is starting to heal so he wouldn't restitch it back up. So now I have a open wound down there and it is very painful. More painful than when it was first done. I feel like I am going backwards instead of forwards. This really sucks. Using the bathroom is the worst of all. It burns so bad. They told me to soak in a sitz bath 3 times a day. I feel Like I live in the bathtub. Now I think that it is infected. I go back tomorrow to get rechecked. I know it is infected cause it is all swollen again and it is leaking yellow. I just can't win. I just want this to heal up so I can move on. It has been so emotionally draining. I will keep you informed.

Please keep me informed on your results. I have really been thinking about you. I have been praying for you also. I hope that all your results come back good. You keep strong too.

THIS TOO SHALL PASS
Hey Angel,
Ohhh I soooo empathize with what you are going through! I was diagnosed with Vin III in 2002. I had gone to a gyno for what I thought was the yeast infection from Hell, and she immediately referred me to an onco gyno. I was freaked out. I felt like some hot potato! She passed me over so fast, I never did get my regular pap smear! Long story short, I have had 5 or 6 surgeries/laser extravaganzas ( I have honestly lost count) And the recovery was excruciating. I will give you a few tips that might help...when you are all swollen down there your urine stream is spraying all over the place like a drunken sailor, so I started using a sanitary napkin to cover the affected area...that way the urine gets absorbed into the pad....perhaps not the most desirable thought, but, at it's worst it's still better than urine on an open wound. USE YOUR PAIN MEDS! Take em with some food so they don't tear your poor tummy up, and take a stool softener! (over the counter) This is all hard enough and way worse if ya can't have a BM. Get some Lidocain OINTMENT (not the jelly) well actually I asked my doc for both but the ointment is way more effective for the searing pain of the newly lasered area....but it does burn a bit for a few seconds...then all is dead...and it is bliss just to not feel pain. you need to keep up with your meds though and don't let the pain get ahead of them,,,catching up after you have gone too long in between is a struggle. If you are still having swelling use a bag of frozen peas or corn down in between your legs, it helps to cool the burn and reduce the swelling. And if I were you I would knock off the sitz baths....My doc suggested it and I thought "aint no way". My doc is a man, and I love him dearly....he is compassionate and just a really great guy, but he is still a guy, ergo, he has no vagina and he can only go on "hear say" as far as the amount of pain involved. Get yourself a hand held shower massager, it is the best thing you will ever do regarding your poor injured girlie parts. Make sure it has several settings. You can use it to soothe the area and also keep it clean. Your recovery will take several months in respect to the tenderness, believe me that shower massager will be worth it's weight in gold! and lastly, please allow yourself time to heal. I know we all want to get back at it asap, but the fact of the matter is that your body has just been through a huge trauma, both physical and emotional. Be kind to yourself and lay around like a slug for a while....allow the healing. There is so much more to having Vin III and having this kind of surgery than just getting rid of that horrible itching, and the risk of cancer. There is a huge elephant in the room besides all of the pain. And that is why we see so few women addressing this issue....they suffer in silence rather than deal with the elephant.
If you smoke, QUIT SMOKING!!! (and that's for you too MiMi and Sibby)Smoking exacerbates this condition massively. I know it's hard. I was a smoker that thought I couldn't quit,(40 years) but about six months before my last surgery (Sept of 2011) I decided to give it one more try. I bought the patch, and I started wearing them, a bout a week into it I decided that I was not gonna get stuck dependant on the patch so I left one on for 3 days and weaned myself off and when I finally took it off I just said NO MORE! and every time I get the urge (and believe me I do) I acknowledge it and say "Omg I want a smoke so bad"....and then I say "But I don't smoke, I'm not a smoker anymore" and the craving seems to just disappear. I spent years trying to quit...My doc would say "You need to quit the smoking, you know it makes this so much worse...even 1 cigarette will effect Vin III" and I would say "I'm trying Doc" he would say "Keep trying and one of these days it will stick"....and it did.
We are the 3%....only 3% of women with HPV develop Vin III, (the rest seem to clear the virus on their own.) And of that 3% the vast majority of us are/were smokers. Also, Vitamin D is supposed to help as well. Personally, my experience with Vin III has been as close to Hell as I ever wanna be, I want to make the choice to do what ever I can to minimize the likely hood that it's gonna return ...again. Cause I just can't handle another surgery, and as my Doc has said more than once, "there is only so much tissue that we can remove."
Angel, God Speed your recovery, I will light a candle and say a prayer for all of you girls.

Groovy

sibbyjaydee

angel7418 said:

Day 11 Post-OP
Hey Sibby. Today is day 11 post-op. Wish I had good news for you. Things have been really rough for me. I have to tell you that this is probably the worst thing I have ever been through. I have been in a lot of discomfort from the surgery. I thought I would be back to work by now. Normally, I am a pretty tough cookie but this is really holding me back. I have been just laying around taking it easy and everything just keeps going downhill. I starting noticing that the incision didn't look right. Went in to see the doctor last Thursday. He told me that it was cancer but he got it all out and doesn't think I will need further treatment at this time. Thats good news. I have to go every 3 months for checkups to make sure it hasn't come back. He said that chances are very high for me that I will get it again. He said that everything looked ok. I don't think so. From Thursday to Friday it got worse. Went back to the doctors and my stitches are popping open. He said that it is starting to heal so he wouldn't restitch it back up. So now I have a open wound down there and it is very painful. More painful than when it was first done. I feel like I am going backwards instead of forwards. This really sucks. Using the bathroom is the worst of all. It burns so bad. They told me to soak in a sitz bath 3 times a day. I feel Like I live in the bathtub. Now I think that it is infected. I go back tomorrow to get rechecked. I know it is infected cause it is all swollen again and it is leaking yellow. I just can't win. I just want this to heal up so I can move on. It has been so emotionally draining. I will keep you informed.

Please keep me informed on your results. I have really been thinking about you. I have been praying for you also. I hope that all your results come back good. You keep strong too.

aww Angel...what the heck...it wasn't suppose to be like that. I'm sooo sorry. If your not doing much at home, I don't understand why your stitches where coming out. They say to take the sitz baths 3 times a day, but for not more than 10 minutes each time. Did they use the desolvable stictches? And as with my doctor, when she diagnosed it to be cancer, she sent me to get a PET/CT Scan to make sure it hadn't spread to my lymphnodes. Is your doctor going to send you for a PET/CT? I had a little yellow leakage, but not much. Since you went to the doctor on the 16th, what did they say?

My breast biopsy came back Negative and yesterday I saw my Oncologist for the PET/CT Scan results and it too, came back Negative. I'm in the clear for now and have to go back every 4 months to watch for it's return. My doctor said that i have a 60% chance of it coming back. It sounds like this is the gift that keeps on giving for us...we just have to stay on top of it.

Let me know what the doctor said on your last visit, I'll be praying for you.

Huggles,

sibbyjaydee

mimi6464 said:

SCC or VIN III
Well I will start here in the VIN III board, as I am confused. Sep of 2011 I had 4 biopsies done and 3 came back as invasive squamous cell carcinoma and one as vin 3. I was sent to a major cancer medical center that also handled all my breast cancer and treatment. These doc's are the cream of the crop. They further sent out the slides to a different lab. I never saw on paper what those results were, but was told I had vin 3. Yet he scheduled me for a partial vulvectomy within 2 weeks. I lost both of my labia minors, lost my entire right labia major, a large portion of the perineum, the hood to the clitorius was removed, and they also lasered the clitorius, and the aft of the rectum. I had stiches every where. Recovery was slow. Went back for my 4 week check up in nov2011 to find out they didn't get it all. Let's try some more laser. I told them after xmas. Jan2012 had more laser. Feb2012 check up results were, " let's do just a little more touch up". I said no, I need a vaginal vacation. So now I'm back at 6 month mark and it has spread like fire. What remains of the clitorial area is engulfed and the perineum area again is involved. The other specialist (whom I saw this time) does not want to cut at this time (good for me). He recommended 6 months of imiquimod. But he also wants to do an immune system workup with me. I know my system isn't the best, had invasive breast cancer 4 years ago with 3 surgeries for that. But I am wondering now, if the original biopsies were in fact invasive SCC as first reported by 2 labs? I do have the lab reports from the partial vulectomy which state the ' resection area is vin 3 ' but what of the original areas removed from biopsies. Anybody else experience conflicting results? Has anybody had results with imiquimod? Thank you if you can offer an opinion one way or the other.

Imiquimod
Hey Mimi, I asked my gyno/onco about the Imiquimod yesterday. She said that it would be perfect for me, but she didn't see a reason to prescribe it to me because i smoke. she said that it works to build up your immune system (down there) and that smoking of course, breaks down your immune system, so that it wouldn't really help. I think she's full of it. I believe that if the Imiquimod builds your immune system and the other tears it down, then at least your breaking even right? Anyway, I didn't get the prscription, but she'll give it to me if i want it. I haven't decided yet.

How are you side effects going? are you getting any new ones from this cream, or is it staying the same?

Huggles,

sibbyjaydee

Groovymama said:

THIS TOO SHALL PASS
Hey Angel,
Ohhh I soooo empathize with what you are going through! I was diagnosed with Vin III in 2002. I had gone to a gyno for what I thought was the yeast infection from Hell, and she immediately referred me to an onco gyno. I was freaked out. I felt like some hot potato! She passed me over so fast, I never did get my regular pap smear! Long story short, I have had 5 or 6 surgeries/laser extravaganzas ( I have honestly lost count) And the recovery was excruciating. I will give you a few tips that might help...when you are all swollen down there your urine stream is spraying all over the place like a drunken sailor, so I started using a sanitary napkin to cover the affected area...that way the urine gets absorbed into the pad....perhaps not the most desirable thought, but, at it's worst it's still better than urine on an open wound. USE YOUR PAIN MEDS! Take em with some food so they don't tear your poor tummy up, and take a stool softener! (over the counter) This is all hard enough and way worse if ya can't have a BM. Get some Lidocain OINTMENT (not the jelly) well actually I asked my doc for both but the ointment is way more effective for the searing pain of the newly lasered area....but it does burn a bit for a few seconds...then all is dead...and it is bliss just to not feel pain. you need to keep up with your meds though and don't let the pain get ahead of them,,,catching up after you have gone too long in between is a struggle. If you are still having swelling use a bag of frozen peas or corn down in between your legs, it helps to cool the burn and reduce the swelling. And if I were you I would knock off the sitz baths....My doc suggested it and I thought "aint no way". My doc is a man, and I love him dearly....he is compassionate and just a really great guy, but he is still a guy, ergo, he has no vagina and he can only go on "hear say" as far as the amount of pain involved. Get yourself a hand held shower massager, it is the best thing you will ever do regarding your poor injured girlie parts. Make sure it has several settings. You can use it to soothe the area and also keep it clean. Your recovery will take several months in respect to the tenderness, believe me that shower massager will be worth it's weight in gold! and lastly, please allow yourself time to heal. I know we all want to get back at it asap, but the fact of the matter is that your body has just been through a huge trauma, both physical and emotional. Be kind to yourself and lay around like a slug for a while....allow the healing. There is so much more to having Vin III and having this kind of surgery than just getting rid of that horrible itching, and the risk of cancer. There is a huge elephant in the room besides all of the pain. And that is why we see so few women addressing this issue....they suffer in silence rather than deal with the elephant.
If you smoke, QUIT SMOKING!!! (and that's for you too MiMi and Sibby)Smoking exacerbates this condition massively. I know it's hard. I was a smoker that thought I couldn't quit,(40 years) but about six months before my last surgery (Sept of 2011) I decided to give it one more try. I bought the patch, and I started wearing them, a bout a week into it I decided that I was not gonna get stuck dependant on the patch so I left one on for 3 days and weaned myself off and when I finally took it off I just said NO MORE! and every time I get the urge (and believe me I do) I acknowledge it and say "Omg I want a smoke so bad"....and then I say "But I don't smoke, I'm not a smoker anymore" and the craving seems to just disappear. I spent years trying to quit...My doc would say "You need to quit the smoking, you know it makes this so much worse...even 1 cigarette will effect Vin III" and I would say "I'm trying Doc" he would say "Keep trying and one of these days it will stick"....and it did.
We are the 3%....only 3% of women with HPV develop Vin III, (the rest seem to clear the virus on their own.) And of that 3% the vast majority of us are/were smokers. Also, Vitamin D is supposed to help as well. Personally, my experience with Vin III has been as close to Hell as I ever wanna be, I want to make the choice to do what ever I can to minimize the likely hood that it's gonna return ...again. Cause I just can't handle another surgery, and as my Doc has said more than once, "there is only so much tissue that we can remove."
Angel, God Speed your recovery, I will light a candle and say a prayer for all of you girls.

Groovy

So True
Hey Groovey,

You are absolutely correct about the smoking. I believe that if I hadn't been a smoker, My HPV probably wouldn't have turned into VIN III and Then Valvar Cancer. I need to stop, we all do. I've just alway felt that you have to WANT to stop smoking before you can go forward with stopping. I know it's a horrible thing to say, and yes my life and body would be better for it if we stopped. I guess i just haven't come to the realization that I HAVE to stop smoking. And it seems like the more that people tell me to quit, the more determined I am to not try. sad but true.

Male Doctors: I am JUST like you when it comes to my Gyno. He is a GREAT Gyno and he assisted in my surgery with my Gyno/Onco, but he is still a man and I have said this to my family and friends many of times. He actually wanted to perform my surgery himself (im pretty sure it was because he had never done this surgery before) and I had to be upfront with him and tell him that i wanted a woman to do it. A week before my surgery I told him that i was concerned because i might be on my period. He told me that it wouldn't be a problem and they would just plug me up for surgery or something (he didn't say it so crudely tho). I just thought to myself "this is why i want a woman" i wasnt concerned with surgery, i was concerned with the recovery and being on my period at the same time! you dumba**! There were a couple of other times i felt like he was a lil insensitive to a womans anatomy as far as procedures and recovery were concerned. But STILL, i think he is a great guy and an excellant doctor and I will keep him as my Gyno.

Huggles!

angel7418

sibbyjaydee said:

aww Angel...what the heck...it wasn't suppose to be like that. I'm sooo sorry. If your not doing much at home, I don't understand why your stitches where coming out. They say to take the sitz baths 3 times a day, but for not more than 10 minutes each time. Did they use the desolvable stictches? And as with my doctor, when she diagnosed it to be cancer, she sent me to get a PET/CT Scan to make sure it hadn't spread to my lymphnodes. Is your doctor going to send you for a PET/CT? I had a little yellow leakage, but not much. Since you went to the doctor on the 16th, what did they say?

My breast biopsy came back Negative and yesterday I saw my Oncologist for the PET/CT Scan results and it too, came back Negative. I'm in the clear for now and have to go back every 4 months to watch for it's return. My doctor said that i have a 60% chance of it coming back. It sounds like this is the gift that keeps on giving for us...we just have to stay on top of it.

Let me know what the doctor said on your last visit, I'll be praying for you.

Huggles,

Hi Sibby. I am so glad that all your tests came back negative. That makes me so happy. I have been thinking about you.
Went back to the doctors on Tuesday and it was infected. They put me on antibiotics and I went back on Thursday for a checkup. Seems the antibiotics are working and I am finally starting to feel better. I don't know why the stitches popped open. I surely wasn't doing anything. It actually happened when I was sleeping. They have no explanation for it. Just told me that it will heal it will just take longer to heal. They were the disolvable stitches. He said that I had stage 1A vulvar cancer and it wasn't as invasive and they thought it was so I won't need any extra treatment or tests at this time. I have to go every 3 months to get checked for reoccurance. I'm going to go back to work on Monday. Finally!! Never thought I would say that. Lol. So ready to move on with my life from all of this. Don't worry, I will be staying in touch with you. You have really helped me get through this, just knowing I have your support and I sure hope that you feel the same. Take care of yourself and stay strong.
Angel

mimi6464

sibbyjaydee said:

So True
Hey Groovey,

You are absolutely correct about the smoking. I believe that if I hadn't been a smoker, My HPV probably wouldn't have turned into VIN III and Then Valvar Cancer. I need to stop, we all do. I've just alway felt that you have to WANT to stop smoking before you can go forward with stopping. I know it's a horrible thing to say, and yes my life and body would be better for it if we stopped. I guess i just haven't come to the realization that I HAVE to stop smoking. And it seems like the more that people tell me to quit, the more determined I am to not try. sad but true.

Male Doctors: I am JUST like you when it comes to my Gyno. He is a GREAT Gyno and he assisted in my surgery with my Gyno/Onco, but he is still a man and I have said this to my family and friends many of times. He actually wanted to perform my surgery himself (im pretty sure it was because he had never done this surgery before) and I had to be upfront with him and tell him that i wanted a woman to do it. A week before my surgery I told him that i was concerned because i might be on my period. He told me that it wouldn't be a problem and they would just plug me up for surgery or something (he didn't say it so crudely tho). I just thought to myself "this is why i want a woman" i wasnt concerned with surgery, i was concerned with the recovery and being on my period at the same time! you dumba**! There were a couple of other times i felt like he was a lil insensitive to a womans anatomy as far as procedures and recovery were concerned. But STILL, i think he is a great guy and an excellant doctor and I will keep him as my Gyno.

Huggles!

Hey Sibby
First I would also like to address Groovey....yes, I too like Sibby know that and end to smoking would improve our chances ten fold. It is hard. So I have adopted an ' OP ' method. Meaning, other peoples....so I don't buy right now, but if someone happens to be at the house that has a cigarette, oooh, can I get one of those? I don't go out except to the doctors, exercise class, or grocery store 2 x's a week, so it is getting easier for me. I try mental strategy of staying in p.j.'s until well afternoon, well because you just can't run down to the store and buy them if your not dressed. So in part I am going from early morning until afternoon keeping my mind otherwise occupied. I bought some knitting needles and yarn and will try and make majic to keep my hand/eye coordination otherwise occupied. I will let you know how that goes Sibby.

Now on to other news. Sibby, I know you had mentioned you were going to speak to your doctor about imiquimod. If you don't have to go it, DON'T!!!! Do you remember the itch? It is 100 x's worse than before. Do you remember the healing from surgery, water bottle, blotting after pee'ing, stinging....well, hello again. I have burning, blistering, bathroom situations again, my ovaries are screaming at me like they haven't in many years, I have a constant sore throat in my lymph glands, again the itching is insane, mild headaches, and my remaining left underarm lymph nodes are also saying hello to me in a way that is not comfortable. I was thinking about quiting the treatment, but thought better because of the alternative. I think because of the partial vulvectomy, then revision, and then another decision for another revision.....well I got his partner this last time around and he felt that cell modification for 6 months might prevent further cutting. I was on a every 3 month check up now I'm back to a every 2 month check.....I go back on the 3rd Dec., but still see my PCP and GYN every other 2 weeks for side effects. I hope you are doing well, please let me know when you have your next check up. I want to end with a " what I think is funny " joke about myself. They say laughter is the best medicine. Well I think I already told you that I had a double mastectomy, and you know how much they removed from my 2 vuvectomies....so here goes..... " Hey, just think about it, what Chaz (chasity) Bono paid thousands for, I got done for free......". Boo! I know poor joke, but if you can't laugh at yourself and stay positive, well......

sibbyjaydee

mimi6464 said:

Hey Sibby
First I would also like to address Groovey....yes, I too like Sibby know that and end to smoking would improve our chances ten fold. It is hard. So I have adopted an ' OP ' method. Meaning, other peoples....so I don't buy right now, but if someone happens to be at the house that has a cigarette, oooh, can I get one of those? I don't go out except to the doctors, exercise class, or grocery store 2 x's a week, so it is getting easier for me. I try mental strategy of staying in p.j.'s until well afternoon, well because you just can't run down to the store and buy them if your not dressed. So in part I am going from early morning until afternoon keeping my mind otherwise occupied. I bought some knitting needles and yarn and will try and make majic to keep my hand/eye coordination otherwise occupied. I will let you know how that goes Sibby.

Now on to other news. Sibby, I know you had mentioned you were going to speak to your doctor about imiquimod. If you don't have to go it, DON'T!!!! Do you remember the itch? It is 100 x's worse than before. Do you remember the healing from surgery, water bottle, blotting after pee'ing, stinging....well, hello again. I have burning, blistering, bathroom situations again, my ovaries are screaming at me like they haven't in many years, I have a constant sore throat in my lymph glands, again the itching is insane, mild headaches, and my remaining left underarm lymph nodes are also saying hello to me in a way that is not comfortable. I was thinking about quiting the treatment, but thought better because of the alternative. I think because of the partial vulvectomy, then revision, and then another decision for another revision.....well I got his partner this last time around and he felt that cell modification for 6 months might prevent further cutting. I was on a every 3 month check up now I'm back to a every 2 month check.....I go back on the 3rd Dec., but still see my PCP and GYN every other 2 weeks for side effects. I hope you are doing well, please let me know when you have your next check up. I want to end with a " what I think is funny " joke about myself. They say laughter is the best medicine. Well I think I already told you that I had a double mastectomy, and you know how much they removed from my 2 vuvectomies....so here goes..... " Hey, just think about it, what Chaz (chasity) Bono paid thousands for, I got done for free......". Boo! I know poor joke, but if you can't laugh at yourself and stay positive, well......

:-o
Mimi: hahaha...you are too much! I have to laugh and make tasteless jokes too. I call my gyno and gyno/onco "THE CROTCH DOCTORS". My friends now use the same terminology. If you can't laugh at yourself, then you'll just end up mad and depressed all the time.
And and think you are absolutely correct about the the Imiquimod. The Doctor DID say that it would be perfect for me...but I think i'll just take my chances and see what the next 6 months or so have instore for me. Thanks sooo much for disclosing the nasties of the evil cream. You have like 5 more months of it right?

Angel: How is work going!? you back to normal yet??

Huggles!!

sibbyjaydee

angel7418 said:

Hi Sibby. I am so glad that all your tests came back negative. That makes me so happy. I have been thinking about you.
Went back to the doctors on Tuesday and it was infected. They put me on antibiotics and I went back on Thursday for a checkup. Seems the antibiotics are working and I am finally starting to feel better. I don't know why the stitches popped open. I surely wasn't doing anything. It actually happened when I was sleeping. They have no explanation for it. Just told me that it will heal it will just take longer to heal. They were the disolvable stitches. He said that I had stage 1A vulvar cancer and it wasn't as invasive and they thought it was so I won't need any extra treatment or tests at this time. I have to go every 3 months to get checked for reoccurance. I'm going to go back to work on Monday. Finally!! Never thought I would say that. Lol. So ready to move on with my life from all of this. Don't worry, I will be staying in touch with you. You have really helped me get through this, just knowing I have your support and I sure hope that you feel the same. Take care of yourself and stay strong.
Angel

Hey U
Angel: How is working going? you back to normal yet??

Huggls!

angel7418

sibbyjaydee said:

Hey U
Angel: How is working going? you back to normal yet??

Huggls!

Hey Sibby. How are you doing? I'm doing pretty good. Heading back to the doctors this morning for a checkup. I'm doing so much better. Not completely healed yet but almost there. This has been one long journey.
I went back to work about 2 weeks ago. Short lived that I missed the place. I work with 40 men and no other women. Lol. I'm the boss. Imagine that. Everything is going ok. I am today, 8 days with no cigarettes. This is very tough. Been smoking for 25 years. One day at a time is all I can do. Just want to stick to it for my health. And it makes my son happy too.
How have you been feeling? Take care and I will be back soon.
Angel

sibbyjaydee

angel7418 said:

Hey Sibby. How are you doing? I'm doing pretty good. Heading back to the doctors this morning for a checkup. I'm doing so much better. Not completely healed yet but almost there. This has been one long journey.
I went back to work about 2 weeks ago. Short lived that I missed the place. I work with 40 men and no other women. Lol. I'm the boss. Imagine that. Everything is going ok. I am today, 8 days with no cigarettes. This is very tough. Been smoking for 25 years. One day at a time is all I can do. Just want to stick to it for my health. And it makes my son happy too.
How have you been feeling? Take care and I will be back soon.
Angel

Hey Angel ..So glad to hear that you're almost back to normal. It was a long journey, but you got thru it. I'm doing well, no more issues on my side (for now). I took a vacation day today so that I could go see the movie Twilight without a crowd. What a dork am i?

Congrats on your quitting smoking! That takes a lot of will power. More than I have, I hate to say.

Live Long and Prosper.

Huggles!

Trixi23

Hi All

Hi Everyone

I'm not sure how to post on here.

 

I just got the news today...VIN iii.  Looks to be pretty widespread.  Just inside the vagina and the outside.   Gyno is sending me to a Gyn Onco.  I'm freaking out.  One of the biopsies is infected.  I'm in alot of pain from that. 

I take immunosuppresive meds for an autoimmune disease so I'm thinking that's not helping me....  I hope someone comes on here and reads my post.

Thank you  I'm so scared.

Trixi.

mimi6464

sibbyjaydee said:

Hey Angel ..So glad to hear that you're almost back to normal. It was a long journey, but you got thru it. I'm doing well, no more issues on my side (for now). I took a vacation day today so that I could go see the movie Twilight without a crowd. What a dork am i?

Congrats on your quitting smoking! That takes a lot of will power. More than I have, I hate to say.

Live Long and Prosper.

Huggles!

sibby, don't do it

Sibby, all I can say is that the cream Aldara/Imiquimod might be for some.....but not for all.  I ended up having to take a break, then went back to it again in Jan 2013.  I wish I had just read more on the medication information.  Surgery is a much better option than this stuff.  I will never go back to the doctor (my doctors partner) that prescribed me this stuff, and continue to use it on open sorees/wounds, which makes it's way into the blood stream.  The depression alone made me want to die.  I just finished with small intestine biopsies as they feel I might have Celiac disease, which is an autoimmune disease.  I see a therapist, and she had a psych prescribe me zoloft and zanax.  Plus my PCP has me on antiinflammatories now as my joints and glands are killing me on a daily basis.  I had lower boel biopsies done this past monday.  Am very upset with myslf for lack of follow through on researching this poop!   I go back to GYN on april 19th to see how things are going downstairs.  Oh, P.S.  my CAT scan found another new 9mm nodule on my right breast/chest wall.  That makes 2 now.  Duh, that's why I had a double mast, so it wouldn't come back.......sorry I'm venting!!!!!!

mimi6464

Trixi23 said:

Hi All

Hi Everyone

I'm not sure how to post on here.

 

I just got the news today...VIN iii.  Looks to be pretty widespread.  Just inside the vagina and the outside.   Gyno is sending me to a Gyn Onco.  I'm freaking out.  One of the biopsies is infected.  I'm in alot of pain from that. 

I take immunosuppresive meds for an autoimmune disease so I'm thinking that's not helping me....  I hope someone comes on here and reads my post.

Thank you  I'm so scared.

Trixi.

Trixi welcome

Well Trixi you came to the right place.  Although the messages and responses are hit and miss, stick around.  Make sure you read through the threads so that you can educate yourself from another woman patient exprience.  Like what types of surgery, or surgery aftercare cheat sheets, general health care for your immune system, etc.  This is also a place you can share joy or just vent.  Many women have this, either as a VIN disease or actual invasive cancer.  The main thing is to find a knowledgable, but caring/senstive doctor.  When are you going to see the gyn onco?  What type of autoimmune disease are you being treated for?  Continue to post your questions, and let us know what we can do to hlp put your fears to rest.  Take care, Mimi

Trixi23

mimi6464 said:

Trixi welcome

Well Trixi you came to the right place.  Although the messages and responses are hit and miss, stick around.  Make sure you read through the threads so that you can educate yourself from another woman patient exprience.  Like what types of surgery, or surgery aftercare cheat sheets, general health care for your immune system, etc.  This is also a place you can share joy or just vent.  Many women have this, either as a VIN disease or actual invasive cancer.  The main thing is to find a knowledgable, but caring/senstive doctor.  When are you going to see the gyn onco?  What type of autoimmune disease are you being treated for?  Continue to post your questions, and let us know what we can do to hlp put your fears to rest.  Take care, Mimi

Hi Mimi
Thanks for the

Hi Mimi

Thanks for the Welcome!

I'm seeing the gyno onco this Tuesday, April 2nd. 

It seems the biopsy site just outside the V, at let's say 6 o'clock on the way to the butt, isn't closing and becoming an open hole....not good...that was the one with the white spots.  I'm just freaking out.  I've had such weird symptoms all around w/this and skin yeast infection down there all over, which causes itching, so who knows if I've got VIN all over or yeast infection.  Cuz I itch pretty bad up around the top by the mound I guess you'd call it and inbetween the labia major and minor and had the skin split there on me too for no reason.  So I get times where it itches there.  So maybe it's skin yeast?  I've got it all around.....I'm on diflucan but it just doesn't take care of it.  And this profuse discharge...which is why I have the skin yeast.  So I hope she can help me out.

I think I need a new gyno though...I've got a copy of my path report and it shows all my pathology.  And I don't see any paps since 03 why I had my hyst.  So, where are the vaginal paps?  I thought they were doing them?  They must not have been...I'm so pissed.... so maybe this is in the vagina too.  So, I think in reality I need to have that acid wash everywhere, vagina, vulva up to where-ever they go in the butt crack, right?  So, I go the gyno every freaking year and I'm thinking they are doing this test and they aren't.  Who made the decision not to, and not to discuss it w/me?

I'm livid.

Oh, my autoimmune disease is called ankylosing spondylitis.  It's alot like rheumatoid arthritis, but it hits different joints, larger joints like shoulders, knees, hips, fuses the back & SI joints, feet, calcifies tendons etc...  It usually effects men and it hits women differently than men (usually hits the poximal joints in women worse).  So I'm immune-compromised because of steroids, low dose chemo and biological drugs...probably not a good combo for the VIN.

funbeadgirl

Trixi23 said:

Hi Mimi
Thanks for the

Hi Mimi

Thanks for the Welcome!

I'm seeing the gyno onco this Tuesday, April 2nd. 

It seems the biopsy site just outside the V, at let's say 6 o'clock on the way to the butt, isn't closing and becoming an open hole....not good...that was the one with the white spots.  I'm just freaking out.  I've had such weird symptoms all around w/this and skin yeast infection down there all over, which causes itching, so who knows if I've got VIN all over or yeast infection.  Cuz I itch pretty bad up around the top by the mound I guess you'd call it and inbetween the labia major and minor and had the skin split there on me too for no reason.  So I get times where it itches there.  So maybe it's skin yeast?  I've got it all around.....I'm on diflucan but it just doesn't take care of it.  And this profuse discharge...which is why I have the skin yeast.  So I hope she can help me out.

I think I need a new gyno though...I've got a copy of my path report and it shows all my pathology.  And I don't see any paps since 03 why I had my hyst.  So, where are the vaginal paps?  I thought they were doing them?  They must not have been...I'm so pissed.... so maybe this is in the vagina too.  So, I think in reality I need to have that acid wash everywhere, vagina, vulva up to where-ever they go in the butt crack, right?  So, I go the gyno every freaking year and I'm thinking they are doing this test and they aren't.  Who made the decision not to, and not to discuss it w/me?

I'm livid.

Oh, my autoimmune disease is called ankylosing spondylitis.  It's alot like rheumatoid arthritis, but it hits different joints, larger joints like shoulders, knees, hips, fuses the back & SI joints, feet, calcifies tendons etc...  It usually effects men and it hits women differently than men (usually hits the poximal joints in women worse).  So I'm immune-compromised because of steroids, low dose chemo and biological drugs...probably not a good combo for the VIN.

You GO Girl!!!

HI there Trixi...my blood just boiled when I read your post about the lack of pathology reports! Certainly if your issues progress to a cancer diagnosis, I think you have ample grounds for malpractice. I just hate it when something is missed  and the patient suffers because of it. You have every right to ask questions and demand an explaination. I would suggest that you write down your questions before you go to your appointment, that way you won't be distracted from what is important to you, and then you'll have a way to write down what they tell you.

What I usually do, is at each doctor appointment, I ask nurse to send me a copy of notes from doctor for that appointment, and I always get a copy for every surgery and pathology that I have had done, I have a 3" pile of reports. Right now I found something I think was missed, so I will have to address at my next appointment. I am a vulvar cancer survivor and I've had 2 metasteses to the bone of vulvar cancer. (I've also had thyroid cancer), so I know what I am talking about. You are your own best advocate and any good doctor would welcome your questions and understand how you feel. You also have every right to change doctors if you want. I always say that I am a consumer and buying a service from the doctor, if I don't like the service, I go somewhere else.

You have been through so much, I am sorry for the pain and discomfort you must have to deal with and then having the autoimmune disease on top of all that, it must be very difficlut. I'm sure as you know, stress can be a big factor in how your body handles and recovers from all of this, so try to deal with that too in a positive way.

I wish you the very best, I hope you let us all know how you are doing after your doctor appointment. Be Strong!

Trixi23

funbeadgirl said:

You GO Girl!!!

HI there Trixi...my blood just boiled when I read your post about the lack of pathology reports! Certainly if your issues progress to a cancer diagnosis, I think you have ample grounds for malpractice. I just hate it when something is missed  and the patient suffers because of it. You have every right to ask questions and demand an explaination. I would suggest that you write down your questions before you go to your appointment, that way you won't be distracted from what is important to you, and then you'll have a way to write down what they tell you.

What I usually do, is at each doctor appointment, I ask nurse to send me a copy of notes from doctor for that appointment, and I always get a copy for every surgery and pathology that I have had done, I have a 3" pile of reports. Right now I found something I think was missed, so I will have to address at my next appointment. I am a vulvar cancer survivor and I've had 2 metasteses to the bone of vulvar cancer. (I've also had thyroid cancer), so I know what I am talking about. You are your own best advocate and any good doctor would welcome your questions and understand how you feel. You also have every right to change doctors if you want. I always say that I am a consumer and buying a service from the doctor, if I don't like the service, I go somewhere else.

You have been through so much, I am sorry for the pain and discomfort you must have to deal with and then having the autoimmune disease on top of all that, it must be very difficlut. I'm sure as you know, stress can be a big factor in how your body handles and recovers from all of this, so try to deal with that too in a positive way.

I wish you the very best, I hope you let us all know how you are doing after your doctor appointment. Be Strong!

Hi and Thank you Funbeagirl

Hi and Thank you Funbeagirl for your reply.

 

I'm sorry you are going through so much yourself.  I understand bone pain...nothing soothes it, does it...I can appreciate the pain (to some degree) that you are going through.  I have pain in my bones from a type of calcification that happens with the AS.  I'm just sick with the pain and suffering that these diseases cause, literally sick.

 

So question for everyone...

 

Anyone here with profuse vaginal discharge?  and it doesn't smell normal?  It's not discolored or anything just alot it and it doesn't smell like me.

Thanks.  Blessing to all.

Etnasa

Trixi23 said:

Hi and Thank you Funbeagirl

Hi and Thank you Funbeagirl for your reply.

 

I'm sorry you are going through so much yourself.  I understand bone pain...nothing soothes it, does it...I can appreciate the pain (to some degree) that you are going through.  I have pain in my bones from a type of calcification that happens with the AS.  I'm just sick with the pain and suffering that these diseases cause, literally sick.

 

So question for everyone...

 

Anyone here with profuse vaginal discharge?  and it doesn't smell normal?  It's not discolored or anything just alot it and it doesn't smell like me.

Thanks.  Blessing to all.

Upcoming Laser Surgery

I am a 44 year old Canadian woman who is a week away from my first and I pray only laser surgery after being diagnosed with VIN III.  I was diagnosed after a year of trips back and forth from my family doctor who thought I was just suffering with reoccuring yeast infections.  After my last inflammation which left me in great discomfort 'HE' decided it was best if I visited a Gyno.  It took from February to October of 2013 to get into one and upon my first visit and examination she had me in for a biopsy the next week.  I did not get my diagnosis until December and she wanted to move fast....which scared me.  I had just started a new job the week before and when she wanted me off for two weeks I made the comment that I couldn't get the time off so soon.  She made me feel selfish and I explained to her that me loosing this job would cause more problems in my life.  I finally got the courage to approach my MALE boss and explain to him (with minor details) of my situation.  As he fully supported me I still had to wait til March, for my probation period to be over, to be able to get time off with sick pay.  So that is where I am now.   I have read through all of your experiences with healing and recovery time and I am hoping that i am one of the ones who can recover from the surgery at least in two weeks so I can get back to work.  This isn't something I can chat with people about so I was glad to find this forum.  Looking for positive advice on what I am going to be faced with in the weeks to come.