Vin 3

hiya , thank you so much i appreciate your views it has made me feel loads better, and also for being here for me when you are going through a lot yourself thank you Mary Rose xx love Denise xx

hi Janet , thank you for your advice and i will certainley try to find a shee wee, anything that will make things easier will do for me, its so nice that there are people out there like yourself that have been through a lot worse than me and your still there to help thank you so much , love Denise xx

There thought it was thrush at my docs aswell but then i noticed a lump and went back refreed me but i felt like i was waiting for ages so i kinda annoying my docs by going back and thankfully i did.   Proparly presumed i was to young to get cancer i'm 28 but some people on here are younger.

Unknown said:

There thought it was thrush at my docs aswell but then i noticed a lump and went back refreed me but i felt like i was waiting for ages so i kinda annoying my docs by going back and thankfully i did.   Proparly presumed i was to young to get cancer i'm 28 but some people on here are younger.

 

 

Hi Pollywolly,

I too had surgery for VIN III back in June (see my posts).  It all went well, apart from getting an infection, but a dose of anti-biotics helped clear it up in no time.  I had my surgery on the Thursday and was back at work on the Monday.  It was a bit uncomfortable to say the least, but I also found that walking about a bit helped - it gets the blood flowing.  I can understand how you feel as  I am in Brisbane and all my family & friends are in Scotland - I felt so sorry for myself!  However, like you, what can you do apart from laugh???  I have just come back from a visit to Scotland where I was able to discuss this with my best friend so am feelin a bit better about it all now.  I have healed up well, and I think my new "bits" are almost as good as new!!!!

You hang in there and remember, there are lots of us here who have been through it, so you need never feel isolated!

Kath xxx

Hi Kath, I had my surgery on the 10th aug , was booked in under the public sector as my medical insurance is still in the wait period, but i had to go private as they post-poned my opp until the end of Otober and mentally i just couldnt wait that long and also since having my biopsy it had spread quite a lot. I am not to bad now but like you i got an infection and was in a lot of pain and feeling very sorry for myself, antibiotics have done their job and im feeling loads better, i am back at work tomorrow but im still a little tender but think i need to go back for my sanity haha. I am lucky i have my best friend here in Perth and she has been a rock. I am hoping and praying now that it does not return as a few of the ladies on here have but will cross that bridge if and when it happens. Iam on a bit of a mission at work to let a lot of the Ladies know about this and make them more aware (iam a hairdresser) it is so amazing that like me most of them have never heard of it, so if me having this makes more women check themselves then it was worth it , will talk soon and thank you Kath for your kind words , love Denise xx

Hi ladies I have been off in my own world. I go back to work tomorrow for the first time in 3 months. Even tho I have had the all clear, phew!!! my emotions have been all over the place, massive sweats when I get anxious, don't want to go anywhere on my own, I'm ok if I'm with OH or DD.. I didn't think I would be feeling as useless as I have done but from tomorrow it's onwards and upwards. Look out world here I come Thanks to everyone for being there when I needed you, and my love and wishes to you all xx

Hi.  I'm from America and I can't seem to find any support groups like this one here.  I was diagnosed with Vin iii 2.5 years ago.  I'd probably had the first lesion for at least a year and a half.  When they did the biopsy, the nurse practitioner called with the results at 3:00 on a Friday, left a message that something was wrong, but didn't tell me what.  I was a mess the whole weekend, and it was my birthday, so this started out with a great deal of anxiety.

A few weeks later I had excision.  The lidocaine only sort of worked, so I felt a lot of the excisions and the stitches.  It came back shortly after and I was on a 3 or 4 month course of Imiquimod.  Super painful.  It came back again.  Next, I tried Aldara which didn't workell.  Finally, I had at least 20 lesions lasered off.  That was 5 months ago and it hasn't come back as far as I can tell.  I have an appointment at the end of the month.

This has caused, for more than a year now, an almost debilitating axiety.  I don't want to have sex with my husband.  I've lost my confidence and and feel in no way sexual.  I don't want to leave the house, let alone drive or come to work.  I wasn't this bad until the second time it came back the second time last summer and my doctor was late with the biopsy.  She told me that it was late because pathology had to do an extra test to make sure I didn't actually have cancer.  That's what sent me over the edge. 

What I think about a lot is that it can spread to my cervix.  Or my anus.  This is what killed Farah Fawcett; vin iii.  I wonder how my doctor will know if it's in my anus.  I wonder if I'll have to have treatment on my cervix eventually.  The thing about this disease is that it doesn't go away.  You have the virus forever, which means that the lesions can keep coming back.  For the rest of our lives.  Which means we have to get checked for the rest of our lives and get treatment.  I dread, dread, dread going for exams.  Twice the doctor has had a medical student with her and wanted to have her observe, and I was like, 'absolutely not.' 

I feel so isoalted.  My husband knows I have it, and he's seen the dramatic change in my personality, and he's been a saint.  Since I find it so embarrassing, I've told only one friend, and she's pretty much blown it off.  No sympathy, no empathy, no support.  So now, I don't want to tell anyone, and I'm so glad that I found this forum.  Not a day goes by that I don't think of vin iii.  I feel like it's taken over my life.

Hi, you are right, not many people know or understand about this condition, no, there is no cure at the moment and yes, it will be with us forever.  Please do try and be strong and positive,  I am 44 and have suffered with this condition for at least six years.  I find it very reassuring that the doctors want to monitor me so often and that they also rely greatly on any changes I find.  Make sure you keep your appointments, have regular smear tests and keep a close eye on yourself. Just remember the lesians are being removed to prevent cancer.  I try and tell as many friends as possible about my condition even as far as mentioning I now have a designer vagina lol.  I seperated from my partner (not because of my condition) a year and a half ago and have been single since.  Not through choice just being too picky I suppose.  I cant wait to have another sexual relationship! I know it is really hard but try focusing on the great things in your life right now, make the most of every day and dont let it rule you.

I hope what I have said is helpful, I am here if you want to talk more

Much love

Emma x

Hello Sallac.  I have just been diagnosed with VIN for the second time.  The first time I had it I had basically the same history as you - intense itching, coarse of thrush treatment - but eventually was referred to gynae by a urologist in Sept 2016 when she noticed an ovarian cyst on a scan after she had surgically removed a cancerous tumour from my bladder.  Although I recovered well from the VIN surgery due to the consultant going on maternity leave I didn't get a follow up appointment until 6 months after the removal of the VIN and the itching had started again.

To cut a long story short the dermatologist I saw, eventually, has said that she would like to use Aldara cream to treat the VIN.  As the area is extremely sore (I haven't been able to wear pants since October) I was wondering, was this offered to you and did you have the choice of Aldara or surgery to remove the VIN?

I have seen a gynaecological oncologist but he thought the VIN was lichen sclerosis and referred me to the dermatologist, but when she did the biopsies they showed that although there is lichen sclerosis underlying, there is also VIN.