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 have no advice, just had a colposcopy for CIN, but bumping for you.

Hi napoleona...am de-lurking for this! I have got VIN. Haven't had or heard of the cream though. My last lot of surgery was in 2009. Fire away if you have any questions and I will help in any way I can.

thank you usedtobe for bumping! and thank you snix. i have so many questions! I have vin 2/3 as far as i know. the consultant has advised me to try this acid/cream which he says will help in about 60% of cases. but the side effects are blistering, pain, swelling etc which im thinking is not good as i have to work etc. also it may not work at all.i will give it a try though. he said if its too bad to just stop it. the surgery he didnt discuss with me except to say that it may be an option if necessary. im worried about recurrences, im worried about it developing while i wait for the cream (about 3 weeks wait to get it!) and also i have a lump which the consultant thinks is a cyst but he says he will refer me to get it removed if i want. all in all im scared and i feel like they dont give you enough info/advice. i dont have another appt til 3-4 months time! can you tell me a little of what happened to you? if you dont mind. there really doesnt seem to be much info around, i had never heard of it til i got it. i thought it was where i was stitched post childbirths that was itching/sore. thank you so much x

I think the cream has got to be worth a try. I would of tried it before surgery if I had been offered it but my circumstances were slightly different in that although I had had VIN for many years at stages 2/3 without it worsening prior to the surgery, mine really flared up when I was pregnant.(I did have many 1cm punch biopsies to take out anything that looked sinister over the years.) I then missed 2 appointments on the trot and when I finally did get to the 3rd appointment my consultant had retired so I had to be referred to another hospital and consultant. So the timescale from giving birth to actually having the op was a little over a year. When I got the results after the first op there was a little bit of invasive cancer and the rest was VIN 3 but as I say it did take a year to progress to that stage, so hopefully the 3 weeks wait for your cream to arrive shouldn't be a problem.

I won't lie to you napoleona, I was in pain after the surgery but no more than having stitches after childbirth. My consultant wanted me to stay in hospital but I didn't want to be away from Ds. I had a couple of days in bed and was then up and about but a bit slow on my feet! Plenty of pain killers and plenty of air to the area (naked from waist down, laid on the bed with legs akimbo!!!)
My symptoms on a day to day basis have improved dramatically since having 2nd op 6 months after having the 1st. I don't really have much in the way of soreness and itching now, but prior to ops symptoms used to really get me down and sex would often be painful. I am glad I had the ops to be honest and I wouldn't hesitate if I had to have another one.
I hope this helps in some small way and please feel free to ask if you have any q's about anything. I wish you the very best of luck with it all. x

Thank you very much, its really kind of you. It sounds like you have been through a lot and you dont sound panicky about it at all. i think i need to calm dowm about it a bit tbh, I am a bit of a pessimist! I think I have got HPV of which some strains are thought to contribute to the development of Vin. I first got symptoms about ten - fifteen years ago - after the birth of DS. I am also a smoker so i have to give up. I am 40 by the way. I think what is confusing me is that the consultant was very serious about it when he spoke to me saying that whatever treatment i have will not be easy, but then he ended up sending me away to wait for the cream to be prescribed by someone else and also to be referred to a gynae surgeon for removal of cyst. It all feels very bureaucratic and i am worried they will forget about me i guess. Do you still get follow ups now? i presume they keep a close eye on you. May i ask how big your surgery was? my Vin is mostly at the bottom of my vulva near the 'opening' and on the opening itself but also goes up one side a bit. Do you know if they have to take a larger area away to ensure its all gone? Sorry if these questions are too much, i am overwhelmed with 'meeting' someone who knows what im on about!! take care x

No Thanks necessary napoleona! I am also chuffed to bits about "meeting" someone who has it. I'm 35 (nearly 36!!) and have had it since I was in my early 20's. When I was first diagnosed my cons. told me it was most unusual for someone my age to have it as it's usually women in their 50's that suffer with it. I also smoke and have been advised to give up. I do keep trying to stop but keep starting again.
I had a skintag that developed when I was about 3 mths preg...my consultant whipped that off with the rest!

Mine is ongoing, I have follow ups every 6 months at the mo but my consultant always tells me to ring if I have any problems and they will see me straight away. I have never needed to bring forward an appointment though.
My surgeries were quite big areas....The 1st removed the right hand labia minora more or less top to bottom and the 2nd removed the bottom half of the right hand side of the labia majora. so from about half way between clitoris and vagina down to vagina.I have also had a smaller area removed from my left labia majora. I am now very lop-sided!
I still have VIN on the remaining areas but he is happy to leave what is there at this time and I suppose will do more surgery on an as and when needed basis. I think they try to take as much as they can that is affected just to minimise the chances of more surgery at a later date.

i cant believe you got out of bed so soon after that surgery!! tbh at this stage im not feeling particularly worried about losing bits down there, i have had my dc,s and i have a long term partner, i dont tend to go flashing my bits off to people! but i wonder what the psychological effect will be if i actually do have surgery. did you find this affected you in any way? you had it very young, they told me i was 'young' to have it at 40, lol. i note you had a skintag, i have one too, but its on my 'bum'. i dont know if thats involved, as they just took the one biopsy from one area. i think they need to biopsy other areas which i will mention next time i go. The cream i think leaves little scarring which is a good thing obv, i am wondering tho how i am going to go about applying it to the correct areas, it is also important not to get it on normal skin, could be interesting lol. the side effects are swelling, blistering, pain and bleeding. how lovely! and i have to sit down at work all day. oh well, i will give it a go and i will report back. by the way im in the south east just so you know!

I do have the odd occasion where I get a little insecure about it you know, but I just try and tell myself that I'd rather be a bit lop-sided than not here at all!!
I've had problems with CIN aswell and had my first abnormal smear at 18 and 1st op for that at 20, I think because I've had to deal with that from such a young age it's become a way of life almost, which I know probably sounds a bit daft but I can't remember a time as an adult that I haven't had something hanging over me. I suppose I've become accustomed to just getting on with it over the years. I've been with DH since I was 17 and I know it doesn't bother him at all (well if it does he's certainly never let on that it does) so that really helps.
The skintag could be part of it, my consultant did tell me it could occur there aswell and to keep an eye out. Having mine removed was the easiest part of my ops though cos they are only attached by a tiny bit of skin so really easy to remove.
I think you are going to be squatting over a mirror to may put your cream on but you may stuggle to only keep it on affected areas and I think you will probably have to sit on a rubber ring whilst you are using it. I am going to ask my consultant about the cream next time I go. You will have to keep me posted about how you get on with it.
I wonder if they could give you some painkillers to take while using it. Might be worth an ask next time you go? I really hope it works for you and that you don't have to have any surgery.x
p.s I'm in the midlands

Thank you Snix, i still havent go the cream i have to wait for the hosp to ask my GP to prescribe it ''money issues'' apparently. My GP hadnt heard anything yesterday. I am itching itching itching, driving me mad lol!I have a lot of questions for the consultant which didnt even occur to me when i had my appointment, i just sat there in stunned silence lol. I think i might try to ring the hospital and ask if maybe a nurse or doctor could speak to me - its mainly about putting the cream on and keeping it in the right place. anyway, take care i will let you know how it goes.

Glad to see you got some advice.

Good luck with it all.

Why don't you try ringing your consultant for another appointment to see if they can hurry things along. Then you can ask your questions at the same time. I remember how much it can drive you mad. If I can be of any further help in any way, even if you just want to "chat" inbox me. Take care and best of luck.

Hi Guys (Gals)
I have vin 3 and am having surgery on 23rd March - a bit scared, not of the op as will be glad to get sorted but its how much they have to take away and the healing process afterwards!!!!!!!! i was offered the cream as part of a trial that is being done, and after having read all the literature and success rate is 30% i opted for the surgery. Didn't think i would be able to apply cream without getting it everywhere!!!! The creams trial is being run by University Hospital Wales in Cardiff. Will update you when i have had the op!!! good luck with your treatment napoleona, and thanks for the info snix getting REALLY nervous about going in, but more about AFTER i think really

hi jules, really want to say good luck to you and let us know how you get on, you must be very nervous . I am on week 4 of 12 weeks with the cream and thinking of quitting as so sore anditchy. I also just got abnormal smear result so rather fed up.goodluckjules x

Thanks x will keep you posted. Go back to your gp. Matron of hospital where I work said to go for operation too. Quicker to get sorted catch up with you soon x

Hi Jules, sorry my previous message was typed late at night feeling really fed up! Im ok, i am getting a bit put off this cream as i said, im on week 4 and the itching and burning is terrible, it feels as if my pants are full of broken glass. I did see my GP last week but i told her i would try to persevere. Not so sure now but i will take it day by day. I am going to have a break from it (supposed to do 3 times a week now but i have only done once this week)I need to let it heal a little. Do you mind if i ask if you are having a wide local excision? Also you mentioned in your post that the cream has 30% success rate - my consultant told me it is 60% success altho he did stress that we are 'starting' with the cream and that an opeartion may be needed also. I get the feeling i am part of a test altho he didnt say this to me! I have also got some strange side effects (tinnitus!, skin rash) I think i will ask the consultant directly (the locum gp i saw had not heard of vin) Do you know how long you can expect to be off work/off your feet after your op? I hope they give you all the information you need, i dont like the fact that its so hard to find any information about this. Do you have a partner? If so do you mind me asking how they are dealing with this? I feel bad cos I just cant even think about sex and my DH just puts up with it. As i said before i also just got an abnormal smear result which they are going to colposcopy in 6 months. And i have what they think is a 'cyst' inside my vagina that they are going to take out. Good Luck again Jules x

Oh napoleona you really are going through the mill x I have had what I thought was thrush since last summer and went to gp in November referred on a 2week wait and that frightened me stupid so was really quite relieved when I knew it wasn't cancer, I still worried tho' I didn't know I'd been referred for the trial until mid December and spoke to them but I was very unsure about the creams as it said I would possibly still need surgery!!!!! I'll see if I can find the info I had, I think I might have deleted it tho. Amongst all this my daughter got married the week before Christmas, I had family staying and it was quite stressful as no one except my husband knew what I was going thro'. ...... sex!!!!!!! No thanks!! Fortunately my husband has been very understanding Keep smiling, we'll keep in touch but I don't come on every day xx

been to Gp today to say i want to stop the cream as i am too sore to even sit or walk comfortably, she told me to persevere but if i cant get through another week she will get in touch with my consultant, so i am going to let it heal a bit, not use the cream for a week or so and see how it goes. wishing you all the best for the 23rd Jules x

Changed my name!!! Good luck with not using the cream, keep speaking to your gp tho'. Must admit feeling quite nervous, apprehensive !!!! Will post again later and let you know how I'm getting on!!! Thanks for your wishes xx

Hey good morning, what a beautiful day!! The op wasn't as bad as what I worried about. Feeling very tender and sore, can't really sit but it is only day one!!!!! Will keep you posted as the days go by. x the staff and consultant were brilliant really explained everything on what to do and not, as much fresh air as possible and keep it really clean, rinse after every wee and a bidet if you've got one. I've just bought one through amazon just waiting for it to be delivered now!!!!!! I can't believe how much better I feel about the whole thing. Post soon xx

well done Jules that is great news! you sound very chirpy. have fun on your bidet :) i spoke to my consultant and they said i can do the cream once a week only to see if it is more tolerable, i took a day off work yesterday and im trying to let it heal a bit before i put more on. hope you feel less sore soon, rest and let everyone else look after you !

Hey napoleona one week since the op!!!!! Still painful but able to "sit" a wee bit longer each day. Still weeping from the wound a little but it's definitely getting better. How are you getting on?????

Hi Jules, Im glad you are getting on 'ok', although it must be painful. When do you have to go back for follow up? I have an appointment in early May to see about removal of cyst, which i think is is an unrelated thing (but in same area!) I havent put the cream on again yet although Im supposed to have, I will have to do it tonight. If it flares up really bad again I think I will admit defeat. I spoke to my consultant secretary last week and he has gone on holiday so she had to ask another doctor for advice for me and he said I was to keep going with it. But easier said then done! The itching/soreness is unbelievable. Did you have a lot of stitches??

Not too many stitches, I didn't ask to be honest!!!! I go back in two months and then 6 months after. I still haven't driven my car yet, maybe will try after the weekend, don't feel ready yet!!!! If your consultant says carry on with the cream maybe try it for a little bit??? Good luck xx

I have had this but unfortunately mine was malignant and surgery was the only option. It was completely successful though and the results cosmetically are brilliant. I am 9 yrs post surgery and had one other tiny patch and it turned out to be harmless but was going to use the cream if the biopsy had showed further VIN.

Hi noddy, thanks for the message, can I ask re the malignancy you had, was it a cyst? Mine is a cyst maybe size of a large marble, its been there years, no symptoms. Anywayim having it removed. Did you also have vin? Sorry I'm typing on my phone which is not easy, and well done jules for being brave! x