How did you all know you had something wrong/vulva cancer.

Hi Honey, I am so sorry to hear of all your health troubles.  It really takes a big bite of life.  I know.  I just want to say your symptoms of your vulva sound a lot like mine in 2008.  I was also mis-diagnosed as Lichen Schlerosis (sp?) as well.  It just would not heal though and got real itchy at times.  Eventually it started leaking and bleeding slightly.  It was very uncomfortable. It was the lower vulva and near the perineum.  Finally I had a biopsy and was CORRECTLY diagnosed with VIN 3 and not sure if it is Stage 1 or 1a, but not invasive yet.

I had a wide local excision within one month.  Margins were not clear and they did not go back and remove more tissue.  FAll 2011 it was back with a vengence.  Grew much quicker this time.  I had a more radical excision Dec 2011 and still don't feel great although I am back at work. 

I don't want to scare you but I would insist on a biopsy to know for sure.

Take care and keep in touch.

dd

Hi Honey

I am so sorry to hear about all you have gone through during the  last 18 months you must feel wrung out by it all :(

In answer to your question "How on earth did you know something was wrong " I was showering one day and as I washed' down there ' I felt a lump ,it wasn't especially sore and when I looked it was like an ulcer .Being an old nurse I went to the doctor that morning and he took one look and said I needed to be seen ASAP .Within 2 weeks I had been diagnosed with cancer and then within 2 months had had my surgery and got the all clear .

Since then I have been diagnosed with Lichen sclerosis although the biopsy doesn't show it ,and started on steroid cream to stop the infernal itch .I am paranoid about  the cancer making a return but have 3 month check ups and as it is a slow growing cancer I know they would be able to catch it in time again .

If I was you I would get an appointment with your Doc as soon as you can so that if there is anything really nasty it gets dealt with quickly .I wish you all the very best luck in the world with this Honey and please let us know how you get on

(((Hugs))))

Cherryl

Hi Honey

You poor thing. You have been through so much you must be thoroughly exhausted.

I suffered with lichen sclerosis for 12 years. In 2008 I had two biopsies as the skin had thickened and turned white and another one in 2010 for the same reason. They all came back negative for cancer. Then in October last year I got a lump which was so sore it was raw. I had a biopsy to remove the lump in November and was diagnosed with with cancer. I had surgery in January and am now free of cancer and have check ups every 2 months.

I know you are scared but you really must get this checked out. It may be something completely different but the sooner you get it checked the better.

Keep in touch and let us know how you get on.

Cazzi xx

Hello Everyone, well i just wanted to say thank you for your replies, they are such a great help. I cant remember if i said i tried to make an appointment back at the hospital with my gynea dr, but they said i had to go back through my g.p.  Well ive done this and just got my letter today to say ive got an appointment on the 20th June, same dr so i'm very happy.  Not too long to wait i'm glad to say.

Well i finally managed to have a look 'down there' with a mirror, a very hard job when you have a big belly in the way and your short sighted, so i put the glasses on for a good look lol, got a big hand mirror of which one side was magnified.   I will have to write this as i know it as i don't know what the proper names are, but of the two lips, at the very bottom of one lip, right near the vagina entrance, it is thickened permanently, it is very pale in colour and i'm guessing this may be what they call 'white'. The itchyness is unbearable, and i bleed with the itching, it just never goes away.  But the one thing i did find strange was there is a tiny area that to feel it, it feels like a sore spot/pimple, but it was not really much to see. it looked more like a line, i know that sounds strange but it sort of looked like a slit, i could not see much more apart from the area around the vagina entrance was very red and angry? 

i'm not sure if this is still just lichen Schlerosis (sp) , but i notice you talk about VIn, i know this is cancer and it has stages, but i'm still abit confused about the word vin?

Also, how did you alll manage with the biopsy, i can't even wipe myself, or have a wee wee, its agony, stings like hell, makes me cry, so how the hell can i let them take a biopsy? How do you get around this, did anyone get put to sleep to have it done.  If you have any more info of your experiences i would be glad if you shared it with me. many thanks indeed.

Honey xx

Hi Honey

There is a good section giving information about vin on this site, not sure if I can link to it:

www.macmillan.org.uk/Cancerinformation/Cancertypes/Vulva/Pre-cancerousconditions/Vin.aspx

It is important to remember that vin is a precancerous condition but the cell changes can develop into cancer so need to be monitored or dealt with.

I had a biopsy done and was put to sleep for it and like you I found it really painful to urinate and worried about how I would cope. The best method I found was to get a tub (like an ice-cream tub) and fill this with warm water, I would then sit on the toilet holding this underneath me and using some paper towel (anything that doesn't break up so quickly would do) I would soak the towel and try to soak the area while I urinated. It diluted the urine and made it a bit more bearable. My male GP advised going to the toilet in the bath or shower, I'm not sure why he thought I would have the time or inclination to undress and run a bath each time I wanted the loo!

Hope this is of some use to you :)

Hi muttsmum 

Thank you for the tip, ive got my appointment through for the 20th  June, so have got the ball rolling. ive still got such terrible memory problems, not sure if its still chemo related from  my breast cancer, or if its heart related from lack of oxygen, but either way its left me more thick than i originally was lol, but the point i wanted to get at, was that i have already posted to you to tell about my appointment, but its not here so i dont know where ive posted it haha, sometimes i do make myself laugh, i really do some strange things lol.

When i asked about hurting when you go for a wee wee, i meant now, as it hurts me to go for a wee wee, it stings as im so sore. i cannot stop stratching/itching, but ensure that i never use my hands, always through my knickers as im afraid of getting an infection. But this leaves me in agony, as the itching is so very bad, im left so very sore, often i bleed, but only from the site, not from the vagina itself. 

I did have a look at the site you left me, thank you very much for that, i now realise that VIN is not caner, as i thought it was. Thats a god send.

Twenty odd years ago i had cell changes on my cervix, i had to have them lasered off, but ive been fine since, but it makes me wonder if this could be related to the lichen that i have.

How are you doing, and all the other ladies who replied, please let me know how your all doing. 

Many thanks

Carolyn.

OMG, ive just seen i had already posted about my appointment on my previous post, lol. See what i mean about forgetfulness., its getting worse???

Hi Carolyn

Lol, blame it on the stress, that's what I do! I'm glad you've got your appointment through. It was hurting me to wee before my biopsy too, I was glad that they kept me catheterised for a week after my main surgery. I'm doing o.k. I think, I'm suffering some fluid build up on the one side where my lymph nodes were removed and the scar there is a little sore (I need to find some short style pants!) and I still get very tired but that's to be expected. I have my first follow up check next month, I shall be glad to get that under my belt I think. Shall be thinking of you, I remember how every week felt like a lifetime while I was waiting to get sorted.

Hi everyone, its been a while since i posted as i am having a real bad time at the moment with one of my children, so not been talking to people as i feel so down.

Well i went on the 20th for my appointment with the gynea dr, she had a look and she said it certainly does look like Lichen Sclerosis, but she still said she wants a biopsy done, and she did it then and there, best way as it meant i could not sit and worry about it.  OMG the injections stung like hell, but once numb i never felt a single thing, its always the injections that are worse. I have a stitch or two, and that has been sore when i sit down etc. i started to  bleed after 3 or 4 days but thats stopped now, im guessing i must have pulled a stitch.  Got to wait two to three weeks for results, but she was so confident that it was only the Lichen and nothing sinister she discharged me then and there?? She said she would write to me with the results, but her confidence has given me the confidence to believe its nothing to worry about. Ive got to use that Dermovate cream for 3 months, and she said i would have to use it for the rest of my life. 

Hope your all doing good,

Take care,

Honey xx

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