Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

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RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by DebbieFrench on Sat May 09, 2015 06:53 PM

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Yay!! I hope the Premarin cream takes care of ALL of the pain. Blood flow is very important for us vulvar ladies! I can't remember how long the pain lasted with me. It's been a long time! (2001 and 2012) I do remember having to wear skirts for a while. I was a vet tech wearing skirts with my scrub tops. Really sexy! Lol! I have my annual next month. Praying that I don't see (FEEL!!) that damn needle any time soon! I escaped it last June so unfortunately I think I will be seeing/feeling it. Take sex slowly with much lubrication. It'll feel better soon! Thank you so much for keeping us posted! So important! :) Debbie

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by presley1 on Mon Jul 27, 2015 02:47 AM

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On May 24, 2007 12:00 AM Bfly988 wrote:

I had laser surgery done on my vulvar/labia area on February 7th of this year for Severe dysplasia.  The burns that the laser made healed fine, no infection... of course there was the usual really bad pain while urinating and other after effects but other than that things went well.

 

However now it's been 3 1/2 months since surgery and I get irritation and or itching sometimes....

 I'm wondering if other people who have had lasering done have gotten this AFTER the laser surgery?

I'm told my surgeon is well sought after and very good, and that lasering is done millimeter by millimeter... so it's not likely that any dysplasia was missed, but when I get an itch or irriation I PANIC REALLY BADLY!!!  That not all of the dysplasia was gotten.

 (I associate itching and irriation with dysplasia)..

 Please if anyone has had these symptoms after laser surgery let me know.

It may be possible too that since the area was burned... since that's what lasering is, burning off the cells... that the new skin is still sensitive... anyone think that's why it gets irritated so easily? 

 Thanks!

I'm sorry, but if you are experiencing severe itching IT is most likely VIN. I have been going through this for two years. Surgery after surgery. All VIN3. Soon as instant itching I know what it is and I am correct. You need to see your oncologist when you have these symptoms. ??

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by Dollarshopper on Thu Aug 06, 2015 02:54 PM

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How did your annual go Debbiefrench? I hope all went well.... I am doing a lot better then before but I have a feeling that my doctor didn't get everything cuz now I can see a really small white patch... It's depressing to think ugh back to the drawing board and have to start all over... I am going through a program that my employer offers its called best doctors... They are reviewing my case going through everything and I should hear back from them soon on there opinion if all is being done the way it should or if there is something else they recommend doing...will update soon... Take care

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by KayZik on Wed Jan 20, 2016 08:30 AM

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Oh wow. I'm so happy to have found a semi-active forum with women going through what I have been dealing with! I've been struggling with having so little information and feeling so alone in this. I'm 27 years old and have been dealing with VIN for the last 9 months. Had 1 wide excision this past August (2015). Then in October discovered two new spots. Had biopsies done and found out they're VIN II. Didn't get those results until Christmas Eve of all days. Then I noticed another spot and went in today and had two more biopsies. 4 spots in total, 2 confirmed VIN, the other 2 I don't know yet.

God did I ever hope that after that first surgery I wouldn't have to deal with this again! But it sounds like I'll have to deal with this for the rest of my life, going by all of your experiences. This time around my doctor said perhaps I should laser the spots, as they're not VIN III like the first time. So I'll be scheduling that soon. I keep trying to remind myself that this isn't cancer, that it could be so much worse. I still spend a lot of time despairing though, to be honest. I have a long term partner who I love deeply and who loves me but man oh man it's scary to think about how hard it would be to find someone else to be with if it were to come to that. I'm afraid of scarring and HPV transmission to a new partner and of the risk of my developing cancer. Having to have two procedures within 6 months of each other is terrifying and overwhelming.

You ladies who have been at this for so many years, I applaud you! Your strength is so admirable and I would love to hear what has helped you through it. What are the kind of thoughts and positive affirmations you use to stay hopeful and positive? Thanks so much for all your support :)

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by DebbieFrench on Wed Jan 20, 2016 06:47 PM

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Hello KayZik!

I have found several friends through CancerCompass. I even met one lady in person when she and her hubby came down here (Pensacola Beach)to see me... and the beach! I talk to her daily through messenger and about 6 thers pretty regularly.

There is a huge group of women in a private Facebook group. If you do Facebook it is very helpful. If one woman doesn't have an answer another one will! The support is amazing.

You can find me on Facebook under Debbie van Lith French. Once you friend me I can then add you to the group. And I will also happily chat with you by private message. Any time.

I had my diagnosis and then my vulvectomy on Valentine's Day 2001. So worried my hubby and I didn't realize what day it was! He makes every year special now. Well, more special because he has always been good about Valentine's Day. I can't believe it will be 15 years in just a couple weeks! I had laser surgery in 2012. It definitely is something you and your doctor need to watch closely. Unfortunately the gynecologist who went through this with me for 14 years moved out of state last year. Starting over was hard. I love the doctor but her staff is awful! But I like her enough to deal with it.

Find me on facebook! It's a lot easier chatting on facebook!

??Deb

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by KayZik on Thu Jan 21, 2016 02:59 AM

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Hi Debbie,

Thanks so much! I'd love to be added to the FB group. I just added you on FB.

Yes, it sounds like VIN's the kind of thing I'll have to keep any eye on for a long time. 15 years is a long time! Kudos to you for staying strong through it. I was hoping it would be gone forever after the first surgery, but hey. Now I'm just trying to adjust to life knowing that things will be a bit different - a little more uncertain and more frightening. But hopefully finding strength through this will help teach me lessons that will make my life even better than it is :) .

Thanks again!!

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by Holly444 on Thu Feb 04, 2016 11:32 PM

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Hi Debbie,

I have been dealing with a mysterious, INTENSE itch of the vulva for seven months now. It started out of the blue in Aug 2015, and ever since I've been to numerous doctors and now two different gynes in an effort to find an answer. My current gyn did a biposy on Jan 13 this year and it came back as VIN 1. I just can't believe the itching is so bad at the lowest grade of VIN. I have missed work and can't sleep through the night because it itches so intensely. Oddly enough, my itching is usually much more intense while I'm ovulating, and much less so during my period. Have you (or anyone else reading this) experienced this fluctuation in symptoms during your cycle? I don't understand it. 

After I got my biopsy results, my gyn put me on Aldara to which I had a SEVERE reaction! I only applied it in three small places, on a Wednesday and Friday night and all the skin on my vulva became massively swollen, ulcerated and raw. I begged my doctor for something for the pain and she wouldn't call anything in to my pharmacy for me and said she wanted to see me in a couple days. Meanwhile, I had to lay flat on my back in my bed for nearly 5 days straight - unable to lay on my side because my vulva was so swollen and blistered. Peeing was hell. I could barely walk and I missed an entire week of work. 

When I finally got into the doctor, she said it was the worst reaction she'd ever seen to this medicine. She just told me to let it heal for a month and come back for re-evaluation and that if I still have the itching and/or if there are more lesions at that time then she will "talk to some people." I'm assuming she means she'll consult with other physicians. She's the second gyn I've been to and it just seems like I keep hitting a dead end and they don't know how to help me. I still have yet to get anything from the doctor to help me with the itching. It's taking over my life and making me miss important family events and such because I can't stand to be in public very long without "scratching." 

I'm 31, no kids yet, and have a boyfriend who is very supportive and understanding. My boyfriend and I are choosing to wait to have sex until we're married, so I suspect I must have gotten the HPV from my ex-husband (only partner thus far). :( I'm growing sad and discouraged about what my life and my sex-life will be like with my boyfriend after we're married. Because of the severity of the itching, I'm worried this will progress into a more serious condition and will change me both physically and emotionally. I've suffered from depression in the past, and I'm worried it will return. 

I desperately want to feel normal again. I can hardly bear the thought that this could continue for the rest of my life. I guess I say all of this to ask you (and anyone else reading) if you ever found anything that could lessen the itching so you could regain some normalcy in life? My doctor wanted to put me on an antidepressant if I noticed difficulty with sleeping. I definitely have trouble sleeping, but antidepressants permanently damaged my libido so I will never use them again. Have you (or anyone else) found anything to help with sleep? I've tried using an over the counter lidocaine cream, which helps for a little while, but when it wears off it seems the skin is ever MORE sensitive. 

I still have a month to go before seeing my gyn again. I also have my first appointment with a dermatologist in about a month. Have you or anyone else worked with a derm instead of a gyn? I'm not sure what to expect. 

Thanks for reading my rant. It is nice to have found a place where I can vent about this embarrassing issue to women who know what it's like. Thanks, Debbie, and anyone else who can give advice/support. :)

P.S. Debbie, I'd love to be added to the Facebook group you mentioned. I'll try to find you on FB. Thanks!

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by StacyHartman on Fri Feb 26, 2016 10:34 PM

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Hello Ladies!

    First a huge thank you to everyone that has posted. It's been a Godsend to find others dealing with this too. I just had laser removal and wide excision surgery yesterday. The excision was for s VIN111 lesion diagnosed in Aug of 2015. However, as I was 19 weeks pregnant at the time, the oncologist opted to wait till after delivery. My little boy will be 8 weeks old tomorrow. I also have a 4 y/o son. I'm 41 and need to be around for these little guys. Recovery is going better than I anticipated and as long as don't let the pain meds wear off the pain is quite tolerable. I'm relying heavily on ibuprofen so I can get by with as little narcotic medication as possible since I'm nursing. Debbie, I'd very much like to join the Facebook group you mentioned. Thank you all again so much for sharing your stories!

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by Elsa62 on Wed Mar 16, 2016 04:13 PM

Quote | Reply

Hello there!

I found this board while looking for solutions to itching as I'm currently going through radiation for a vaginal cancer and they're pretty restrictive regarding what can or can't be done in the vulvar area.

I've had a long history with VIN starting just after my hysterectomy for cervical dysplasia in the late 80's.  Please pay attention to that itching and mention it to your gynecologist... it is often the most viable indicator of where VIN might be.  I started out in my early 30's with VIN 1/2.  I had laser surgery or excisions every couple of years. I'm now 53 and unfortunately my VIN had progressed to VIN3 and an invasive cancer.  They did a wide local excision for the cancer but vaginal biopsies showed a new invasive cancer (in addition to a VAIN 3).  Unfortunately I also have PAIN 2 (perianal) as well as AIN 2/3 (anal) so it seems that it is everywhere with me.  I'm very lucky that I have been followed very closely and they have caught the invasive cancers at very small stages and tests show that the cancers did not spread to my lymph nodes or other organs.  

Needless to say, I have long term experience dealing with VIN, laser surgery, vulvectomies (large and small) and the associated pain/itching.

I see some people asking about radiation.  There is apparently no medical studies to show that radiation is effective in treating pre-cancerous intrapithelial neoplasias (VIN) Radiation can only be used to treat invasive cancers.  Radiation is also a one shot deal.  Once you have pelvic radiation I"ve been told that I can never again have radiation to this area.  If I develop another cancer, surgery or chemotherapy will be my only options.

Some recommendations from my own experiences (obviously consult your own doctor about any of these first as every case is individual!):

1.  Use replens.  It's sold as a vaginal moisturizer but it does seem to help with vulvar itching.  I use as small an amount as possible and use it regularly in the itchy area (either before a laser surgery for the VIN itching or sometimes after surgery for the itchy stage when the lasered area is healing).  It also helps after any surgeries (including lasering) because it provides a bit of "slip" when walking so that things aren't rubbing and getting irritated.

2.  Ask if you can use a prescription lidocaine.  I'm often given this after surgery to help ease any pain during recovery but I have also used a small amount on particularly itchy areas and it does seem to help.  Lidocaine is a topical anesthetic.  You can buy it non-prescription or can ask for a stronger prescription formulation from your Doctor.

3.  Sitz baths.  If you haven't bought yourself a sitz bath yet, they are well worth the under $20 they cost.  There are different things you can add to the sitz bath to help relieve itching. I've tried the recommended salt, colloidal oatmeal, black tea (all have anti-itch properties as well as antiseptic properties) but frankly, just soaking in luke warm water several times a day (again both before and after surgeries) is usually very helpful.

4.  For me, the itching is particularly bad at night.  I've found that over the counter Nytol (or Benedryl) often helps.  It's main ingredient is Diphenhydramine which is an antihistamine that can often relieve itching (and also makes you drowsy).  I try not to use it all the time, but sometimes it's the only thing that helps and gives me a bit of sleep.

5.  Let the area breathe. Most of you probably already know the drill.. no nylons, tights aren't a good idea (unless they are cotton and very loose), loose cotton undies... or the ever popular "going commando" while wearing long skirts or loose pajama bottoms while at home.

6. Distraction!  Distraction is an absolutely amazing gift from the human mind. During recovery I often play video games and because you have to be completely focused on the game, it often distracts from both low-medium grade pain as well as things like itching (which can as bad or worse than pain).  I find gaming to be much better than passive things (like reading a book or watching a movie or TV).  The active nature of gaming means that you have to be constantly paying attention and reacting, making decisions or just "doing" something.  There's actually a fair number of studies that show gaming is very effective at relieving pain.  For those that aren't gamers... look at cell phone or tablet games and try to find something that is of interest to you that requires constant interaction (not a game that you can just put down at any point and nothing happens.. this is too passive).  There are lots of free games available so just find something that totally absorbs you and makes you want to keep playing.

7. Sleeping pills.  While distraction usually works well during the day, it's the itching at night that can drive me absolutely insane.  Up till now the Nytol/Benedryl and the lidocaine have worked, but I may ask for a decent non-addictive sleeping pill to see if I can get some sleep.  The radiation seems to make the VIN itching intolerable. :(

I'm not sure if this helps... but if it helps even one person, then I guess it was worth my time to write this.  I started writing this and then went for my radiation. While there I had an appointment with the radiation nurse regarding my earlier questions on handling itching during radiation and she confirmed that all of these anti-itch options are fine.  The lidocaine/replens should be applied after radiation rather than before (the same with all the moisturizers you have to use while doing radiation... they should be applied well before radiation treatments).

The spread of my VIN to various other areas (vaginal, anal and perianal) is highly unusual.  The progression from VIN 1 to invasive cancer is also not the usual course (and even then it took 20 years or so).  Every person is individual and many who are diagnosed with VIN may never have to deal with anything more serious.  All I can advise is LISTEN TO YOUR BODY.  I was fairly insistent that I had anal itching that felt very similar to VIN.  This is what led to a referral and anal biopsies that diagnosed the AIN 2/3 (anal intrapithaleal neoplasia).  Don't be afraid of the laser treatments, the excisions, the vulvectomies or the biopsies (which hurt like hell when they do them!).  It's short term pain.  You can do it.  Don't forget to live and get back to a normal life in between the various procedures for those with recurrent disease.  The next step for me if any of the VIN/VAIN/PAIN or AIN areas result in another invasive cancer is unfortunately a pelvic exenteration (removal of the entire vulva, clitorus, anus, vagina, lower bowel and bladder/urethra).  It's a very major surgery, but I can live with ostomy bags if it means I can still enjoy life.

Best of luck ladies!  In many ways the itching is even worst than the pain that accompanies some of these procedures because good pain relievers tend to work really well... but the itching... yeah, it's very difficult to deal with. :(

RE: Itching/Irritation AFTER laser surgery of VIN III (severe)? Scared HELP!!!

by Norasu79 on Sun Apr 10, 2016 04:35 AM

Quote | Reply

On Mar 16, 2016 4:13 PM Elsa62 wrote:

Hello there!

I found this board while looking for solutions to itching as I'm currently going through radiation for a vaginal cancer and they're pretty restrictive regarding what can or can't be done in the vulvar area.

I've had a long history with VIN starting just after my hysterectomy for cervical dysplasia in the late 80's.  Please pay attention to that itching and mention it to your gynecologist... it is often the most viable indicator of where VIN might be.  I started out in my early 30's with VIN 1/2.  I had laser surgery or excisions every couple of years. I'm now 53 and unfortunately my VIN had progressed to VIN3 and an invasive cancer.  They did a wide local excision for the cancer but vaginal biopsies showed a new invasive cancer (in addition to a VAIN 3).  Unfortunately I also have PAIN 2 (perianal) as well as AIN 2/3 (anal) so it seems that it is everywhere with me.  I'm very lucky that I have been followed very closely and they have caught the invasive cancers at very small stages and tests show that the cancers did not spread to my lymph nodes or other organs.  

Needless to say, I have long term experience dealing with VIN, laser surgery, vulvectomies (large and small) and the associated pain/itching.

I see some people asking about radiation.  There is apparently no medical studies to show that radiation is effective in treating pre-cancerous intrapithelial neoplasias (VIN) Radiation can only be used to treat invasive cancers.  Radiation is also a one shot deal.  Once you have pelvic radiation I"ve been told that I can never again have radiation to this area.  If I develop another cancer, surgery or chemotherapy will be my only options.

Some recommendations from my own experiences (obviously consult your own doctor about any of these first as every case is individual!):

1.  Use replens.  It's sold as a vaginal moisturizer but it does seem to help with vulvar itching.  I use as small an amount as possible and use it regularly in the itchy area (either before a laser surgery for the VIN itching or sometimes after surgery for the itchy stage when the lasered area is healing).  It also helps after any surgeries (including lasering) because it provides a bit of "slip" when walking so that things aren't rubbing and getting irritated.

2.  Ask if you can use a prescription lidocaine.  I'm often given this after surgery to help ease any pain during recovery but I have also used a small amount on particularly itchy areas and it does seem to help.  Lidocaine is a topical anesthetic.  You can buy it non-prescription or can ask for a stronger prescription formulation from your Doctor.

3.  Sitz baths.  If you haven't bought yourself a sitz bath yet, they are well worth the under $20 they cost.  There are different things you can add to the sitz bath to help relieve itching. I've tried the recommended salt, colloidal oatmeal, black tea (all have anti-itch properties as well as antiseptic properties) but frankly, just soaking in luke warm water several times a day (again both before and after surgeries) is usually very helpful.

4.  For me, the itching is particularly bad at night.  I've found that over the counter Nytol (or Benedryl) often helps.  It's main ingredient is Diphenhydramine which is an antihistamine that can often relieve itching (and also makes you drowsy).  I try not to use it all the time, but sometimes it's the only thing that helps and gives me a bit of sleep.

5.  Let the area breathe. Most of you probably already know the drill.. no nylons, tights aren't a good idea (unless they are cotton and very loose), loose cotton undies... or the ever popular "going commando" while wearing long skirts or loose pajama bottoms while at home.

6. Distraction!  Distraction is an absolutely amazing gift from the human mind. During recovery I often play video games and because you have to be completely focused on the game, it often distracts from both low-medium grade pain as well as things like itching (which can as bad or worse than pain).  I find gaming to be much better than passive things (like reading a book or watching a movie or TV).  The active nature of gaming means that you have to be constantly paying attention and reacting, making decisions or just "doing" something.  There's actually a fair number of studies that show gaming is very effective at relieving pain.  For those that aren't gamers... look at cell phone or tablet games and try to find something that is of interest to you that requires constant interaction (not a game that you can just put down at any point and nothing happens.. this is too passive).  There are lots of free games available so just find something that totally absorbs you and makes you want to keep playing.

7. Sleeping pills.  While distraction usually works well during the day, it's the itching at night that can drive me absolutely insane.  Up till now the Nytol/Benedryl and the lidocaine have worked, but I may ask for a decent non-addictive sleeping pill to see if I can get some sleep.  The radiation seems to make the VIN itching intolerable. :(

I'm not sure if this helps... but if it helps even one person, then I guess it was worth my time to write this.  I started writing this and then went for my radiation. While there I had an appointment with the radiation nurse regarding my earlier questions on handling itching during radiation and she confirmed that all of these anti-itch options are fine.  The lidocaine/replens should be applied after radiation rather than before (the same with all the moisturizers you have to use while doing radiation... they should be applied well before radiation treatments).

The spread of my VIN to various other areas (vaginal, anal and perianal) is highly unusual.  The progression from VIN 1 to invasive cancer is also not the usual course (and even then it took 20 years or so).  Every person is individual and many who are diagnosed with VIN may never have to deal with anything more serious.  All I can advise is LISTEN TO YOUR BODY.  I was fairly insistent that I had anal itching that felt very similar to VIN.  This is what led to a referral and anal biopsies that diagnosed the AIN 2/3 (anal intrapithaleal neoplasia).  Don't be afraid of the laser treatments, the excisions, the vulvectomies or the biopsies (which hurt like hell when they do them!).  It's short term pain.  You can do it.  Don't forget to live and get back to a normal life in between the various procedures for those with recurrent disease.  The next step for me if any of the VIN/VAIN/PAIN or AIN areas result in another invasive cancer is unfortunately a pelvic exenteration (removal of the entire vulva, clitorus, anus, vagina, lower bowel and bladder/urethra).  It's a very major surgery, but I can live with ostomy bags if it means I can still enjoy life.

Best of luck ladies!  In many ways the itching is even worst than the pain that accompanies some of these procedures because good pain relievers tend to work really well... but the itching... yeah, it's very difficult to deal with. :(

Hi Elsa62 & everyone else. My heart goes out to those of you that have had and dealt with this for years. Bless you for having the courage to share your story with all of us here.

I had laser surgery  March 29th, and instead of the pain with going to the bathroom, it's started to itch (with healing, I hope!)

I have lidocaine gel which stops the pain, and silvadene (?) Burn cream, and at my follow up 2 days ago, she gave me some estrogen cream thinking that increased blood flow and moisture to the area could only help.

I originally had cin2, and went in for a LEEP when it was found that I only had cin1 (which needs follow up w/ a yearly pap as it usually clears on its own. Cin2 needs removal as it could turn to cin3, which is well on the way to becoming cancer. She took 3 biopsies, 1 near cervix, turned out to be cin1, 1 on upper labia turned out to be vin1, but my complaint with a spot that itched on outer bottom of vagina/perineum area turned out to be vin3. 

I haskex whether excision or laser would be best, dr. Said that since it was a larger area, he would recommend laser. So I did that. 

I hope I don't have to go through this again, but after reading all your stories, I see that it might be possible this lasts a long time. I also was diagnosed with lichen sclerosis -the whitish patches that show up on labia. No cure for that they've said- just treatment with clobetasol cream. 

Thanks for having this forum in which to share. As others have said, how do you really talk about this with others? 

Just thankful there is a support group of ladies that have gone through this to know I'm not alone. When I think of all the idiots that won't vaccinate when it would prevent yhis, it makes me want to have them get this so that they see how much pain and anguish they could save their daughters and sons from.

Thanks, nora 

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