VIN

[napoleona]

hi, does anyone have any experience of VIN? (like CIN - on cervix, only is on vulva)I have been diagnosed with precancer and have to have treatment. I have two choices: a cream which has very nasty side effects or surgery, which i think will be fairly disfiguring as my consultant wants to try the cream first. i am put off by the cream though as its got side effects and also it doesnt always get rid of the VIN so i may well end up having the surgery anyway. if anyone has any experience/advice i would be grateful, thanks.

I had a lump for years which my gp said was a cyst. It started to be very itchy and another doctor saw it and said he would like to biopsy it and then all he'll broke loose! So so scary but the malignancy was in the top layers of the skin so I was very lucky and they got a really good margin with the surgery but it is a lifelong worry and I am really well monitored I hope your surgery goes well any questions just ask xx

Oh noddyholder that's great news, long may it continue xx

noddy, im really glad you are ok and that they are keeping an eye on you, you must have been really scared. I have had my 'cyst' for years too. will see when they take it out, i guess they will 'test' it. Jules, hope you are feeling ok today. I have been off the cream now for ten days or so, i have come up in a rash on one arm?!! dont know if it is related, also have tinnitus. i read the side effects and these are there so i am going to call my consultant again next week for advice. i think i just want to have it all cut out!! xx

Hi just been back to my gp and have been signed off for 2 weeks, I must a slow healer!!!!!! Feeling ok but still tender still uncomfortable to sit for any length of time so it's daytime tv for me and baking cakes!!!!!! X

I think time off is to be expected, you take it easy and look after yourself! X.

Hey Jules how are you feeling?

hi im 32 years old and have been diagnosed with vin 3 starting at the front going all around to the outside of the anus ive tried the cream for 6 wks but in that six weeks its got worse ive now been told its all got to be removed with surgery im terrified and the emotional thoughts im having are on my mind constantly i have lots of questions but dont have my appointment for a month or so can anyone help please

hello could someone please help im a 32 year old mother of 4 wonderful children and have a fantastic partner but i have been diagnosed with vin 3 from the vulva to the anal area ive tried the cream for six weeks but its only got worse so my consultant has told me a vulvectomy and reconconstructive surgery is my only option im terrified and realy dont know what to expect i have lots of question but dont go back to my consultant for a month im worried about how im going to look after my surgery and how long im gonna be in hospital for and most of all how im going to be emotionally after the surgery im not dealing with it very well now so cant imagine how ill feel after the fact im gonna not feel like a woman anymore is playing on my mind all the time has anyone had surgery like this and can give me advice please

Bump for civ78.
Sorry I can't help but hope someone will soon.

Bump for civ78

Sorry no one has come forward, hopefully someone will come along soon

Bumping again for civ78.
Have you phoned your consultant civ78? If you have lots of questions please don't wait a month to ask them.
If you don't want to phone your consultant, perhaps write all your questions, fears and concerns down and take to your GP. Your Gp could liaise for you then.
Sorry I can't help but thinking of you.

no havnt phoned my consultant but have written my questions down will just wait untill i see her and ask my question then iv not got long untill i see her now thankyou for messaging me

Good luck clv78 and I hope you are feeling more positive now. Waiting for appointments etc can be stressful I know.

Hi clv78. Sorry to hear your troubles x I was diagnosed with vin 3 and have had surgery to remove it. It was on both sides of the vulva and around the perineum. I had surgery at the end of march but I am going back again on 16th June. The op itself is fine and recovery was 3-4 weeks. It was very painful for the first week, plenty of painkillers and then very uncomfortable to sit for a few weeks. Toilet was ok for a wee but the other certainly brought a few tears!!!! I bought a portable bidet from amazon and it was the best £15 I have spent. this surgery is to remove a bit more and reconstructive surgery. It's the waiting and unknown is the worst part. Hope this helps xx

sorry i didnt see your post til now clv78, i have vin2/3 mainly on one side and then down towards perineum. i have had the treatment with the cream and did it for 6 weeks then felt it was getting too bad to continue so i stopped. i now have to wait til july for an appointment, i also have an abnormal smear so they are going to do another colposcopy then. i presume i will then have to have the vin cut out as the cream has not got rid of it. i know it is terrifying having to wait, when is your appointment? i have tried asking for a appointment sooner but they dont return my calls, its ridiculous! i dont have the money to go private otherwise i would. let us know how you are, i agree with you its such a difficult thing to come to terms with xx ps hi jules hope you are well xx

Hi all xx well what an outing I have had!!!! I assumed that the op in June was for more vin 3 cells to be removed BUT the consultant told me mid may that there were cancerous cells there too and they would hopefully remove them all. I can't begin to describe how shattered I felt, as tho I'd been hit by an express train!!!!, but op now done 3 weeks ago today and consultant rang me personally to say 2cm clear margin no more cancer cells!!!! Recovery seems a bit longer this time, but I don't care!!!!!! I go back end July to check wound healing and back to work whenever I feel up to it xx good luck my friends hope all goes well for you all xx

Sorry to rebump old thread. Just wondered how everyone is getting on?
I had my 3rd surgery last week. Feeling a bit down about it all and was wondering if anyone had had any joy with the creams?
Tia.

Just saw this, I have had 3 surgeries too, unfortunately the last one was found to be cancer. But I'm completely fine. It will just involve regular checks. I am off work, but should go back soon.
How are you? What stage are you at and how is it going?

Thanks for the reply, The first of my surgeries was unfortunately cancer but the 2nd was just pre-cancer. I go back for the results for this op next week.
I am usually pretty level headed about all this but this last op seems to have knocked me sideways and I'm not sure why! Have you ever used the Imiquimod cream?
Glad to hear you are fine with it all.

It's not surprising you feel knocked sideways, each surgery has taken me more time to recover . I tried the cream pre any surgery but it didn't work. Waiting for results is just awful, I have everything crossed for you. I go back next Thursday for mine. My consultant has told me that it seems I have the sort which is quite likely to recur. So its a case of dealing with that. I'm having counselling at oncology centre. How much RL support do you have? X

And come over to tamoxifen thread for support...its great, esp for those waiting times. It's a thread under gen health, lots of people mostly breast cancer diagnosis but some others like myself x

Hi holstenlips. Not been on over the weekend (been trying to get my head together) so only just seen this. I have got rl support but I'm trying really hard not to burden anyone because I don't want them worrying. Will have a look at the other thread and maybe post if I'm brave enough!
Best of luck for Thursday and thankyou for taking the time to reply x