Vulvar cancer /partial vulvectomy

7 Posts | Page(s): 1 

Vulvar cancer /partial vulvectomy

by Debbieky on Mon Oct 30, 2017 03:01 AM

Quote | Reply

I had a partial vuvectomy in September 2016 the paint was moderate to servere on occasions during the healing process ! But my question is I still have intense burning an itching 24/7which i s what led to the Dr diagnosis of the hpv I go to the cacer Dr every 3 months an she doesn't seem to take me serious when I explained this is anyone else dealing with this that has suffered from hpv virus ! I am miserable an I've tried everything from meds to ice packs ! I'm 

RE: Vulvar cancer /partial vulvectomy

by Suzfitz on Mon Oct 30, 2017 03:29 AM

Quote | Reply
I had VIN III with a skinning of the vulvar. The healing was awful- like I had sat on a chainsaw. It has been 3 years and I do have itching but not severe and only occasional burning. I find toilet paper really irritates as the skin is dry so I use wet wipes when I use the toilet. Good luck!!

RE: Vulvar cancer /partial vulvectomy

by DebbieFrench on Mon Oct 30, 2017 10:03 PM

Quote | Reply

Can you get a 2nd opinion? I'd sure get one if you can. This is a disease you can't ignore. I can't imagine my gyn blowing me off like that. 

I was diagnosed with VIN III/CIS in February 2001. I had a vulvectomy 4 days later on Valentine's Day, hubby and I were so scared we didn't even think what day it was! I had biopsies every 3 months to every 6 months after that and gyn found more VIN III/CIS in 2012. I had laser that time and it was so much easier! Then more biopsies every 3 months to every 6 months again. My gyn left town which was a blessing indisguise because my gyn now is AMAZING. Best in Pensacola, Florida and SO sweet! I haven't had a biopsy in over a year. When she said "Scoot back!" on the table without biopsying, I almost fell over. She says we need to keep as much healthy skin possible so she doesn't biopsy like mad. I still see her every 6 months. 

I don't have a lot of itching anymore but I do have a spot where my hood joined my now gone inner labia. There are times where it is very raw feeling. Not too painful, more annoying. She said that was because the skin there is so thin now from surgery and all the biopsying.

If you'd like to join a facebook private VIN group find me on Facebook. Debbie van Lith French. I'm the only person on fb with that name. Or . Anyone wanting to join as well! 

Debbie

RE: Vulvar cancer /partial vulvectomy

by rmarci on Thu Nov 02, 2017 05:38 PM

Quote | Reply

I don't have hpv but I am currently in treatment for recurrent vulvar cancer.  Mine stems from Lichen Sclerosus which causes burning and itching.  Most often corticosteriod ointments are precribed to reduce the itch of LS.  Sitz baths help a little especially if it keeps you awake at night.  But, your doctor should not be ignoring this - itching is the main symtom of vulvar cancer!  Since it's been a year since your surgery, I would also ask for a Pet Scan to be done. 

RE: Vulvar cancer /partial vulvectomy

by GlitterGalore on Thu Nov 02, 2017 06:00 PM

Quote | Reply
The itching scares me. Makes me think premature lesions are lurking. I asked about using a course of the immunoquid cream (hpv) as a prevention to treat the itching area. Doc blew that off. The docs just don't seem concerned?!?! I have found that tea tree oil and mixed with coconut oil helps with the itching... and last for hours Has anyone used immunoquid cream? Does it just turn your vulva raw? Please see my recent posts regarding the Gardasil vaccine, clinical trial and the big list of stuff to help.

RE: Vulvar cancer /partial vulvectomy

by DebbieFrench on Fri Nov 03, 2017 04:52 AM

Quote | Reply

There aren't many women who can stand the pain of Aldara (Immunoquid) cream. Including myself. It's been some time ago but I know it burned like hell fire! It was more painful than my laser surgery! 

RE: Vulvar cancer /partial vulvectomy

by Victoria0072 on Thu Feb 01, 2018 08:32 PM

Quote | Reply

On Nov 02, 2017 5:38 PM rmarci wrote:

I don't have hpv but I am currently in treatment for recurrent vulvar cancer.  Mine stems from Lichen Sclerosus which causes burning and itching.  Most often corticosteriod ointments are precribed to reduce the itch of LS.  Sitz baths help a little especially if it keeps you awake at night.  But, your doctor should not be ignoring this - itching is the main symtom of vulvar cancer!  Since it's been a year since your surgery, I would also ask for a Pet Scan to be done. 

Yes, I agree! If you feel something isn’t right you should seek second opinion and look for another Doctor. These Doctors don’t seem to give a shit. If you don’t demand things to be done they just don’t bother. Unfortunately, you have to listen to your body and when something doesn’t feel right you have to start making things happen. I hear so many stories about doctors who ignore signs and symptoms. I had a lump on my perineium for about 3 months and the doctors told me it was nothing and gave me different creams. One doctor told me there wasn’t even a lump there. After 3 months of this I referred myself to a gynecologist. The gynecologist saw my lump and advised me it had to be removed immediately. Surgery was booked for a week later and 3 days after surgery I got the call to come in that day. She told me I had vulval cancer. If I hadn’t referred myself to Gynecologist, I might not be here today. Trust your own instincts. Don’t settle for any brush offs or anything you are not comfortable with. I have my check ups every 3 months (vulvoscopy) and my last check up the doctor found an area that looked suspicious and she did a biopsy without anesthetic which was extremely unpleasant. After she did the biopsy, they area would not stop bleeding and then she decided to give me a local anesthetic to give me stitches. She gave me the local anesthetic in the same area she took biopsy from and again, it was terrible. I don’t understand why she couldn’t give me a local anesthetic before the biopsy! Anyway...DO NOT let doctors take a biopsy without giving you (at least) a local anesthetic. I have private insurance and my doctor still chose to do this biopsy without any anesthetic. Just goes to show that it doesn’t matter if your under the NHS or you are under private insurance. I’m still awaiting my biopsy results.
7 Posts | Page(s): 1 
Subscribe to this message board discussion

We care about your feedback. Let us know how we can improve your CancerCompass experience.