Hello SamB123; I am sorry to read about your worries.  I don't know if it helps at all but there are a few ladies who have posted on YouTube about their vulval cancer which you may find helpful.  I realise you may have already looked at this but thought I would mention it just in case.  Annie

Hi Sam

i have felt and still do at times feel the same as you do. I was diagnosed with womb cancer on 13th April. Fortunately I do not have pain but I am still very aware of cancer inside me. All I want at the moment is it to be dealt with.  I have had a biopsy, then a three week wait for results. Then an MRI a week after for which I get results on Friday this week. Another wait. Hopefully I will find out op date on Friday. I need to know. At least you know when and that the doctors have a plan for you.  It is hard to cope with mentally but people on this site are very supportive. They have held me together through all the waiting.  It was hard to tell my family but the support of my husband, son, daughter and big sister has been invaluable.  And there are times when we can smile.  I went for my MRI. I was terrified because I am claustrophobic and find it hard to keep my old bones still. I thought I would’nt cope. I asked for ABBA to be played through the headphones. Well I sang along at the top of my voice from Mama Mia to I have a dream.  When I asked they said the machine made too much noise for them to hear me. I told them....do you know what I don’t care if you could hear. It got me through. Of course I couldn’t hear myself either so it probably wasn’t of concert standard, :-)). 

Thank you. I hadn’t thought about looking on Youtube so I will give it a go. 

Hi SamB123, 

I just wanted to pop by and let you know that there are a few members on the forum who have also been diagnosed with vulval cancer - [@Saraswann17]‍ , [@mpumpkin34]‍, [@Butterflytulip]‍ and [@Moira2017]‍ - and now that I've tagged them in this post they'll hopefully pop by when they can to say hello and share their experiences with you.

I'm including some general information we have about vulval cancer for you to have a look at as well.  

I hope the doctor has been able to help you manage the pain whilst you wait for your surgery and I hope all goes well when the day of your surgery arrives.

Kind regards, 

Steph, Cancer Chat Moderator 

Hi SamB123, just to let you know I'm thinking about you. I recently had a total hysterectomy, including ovaries and tubes,due to possible pre- cancerous womb lining. Turned out to be grade 1 cancer. At least people understand the words used for this. (Not that I've told many folk.)

It does seem the English language is a bit lacking, or under used, for lady parts. I've heard "down below" and other phrases that seem too silly to use in a serious situation. Perhaps just say between your legs? Or genitals? I'd guess that saying it's a female cancer would stop most people asking any more deeply. It's your call how much you choose to disclose. Maybe admit that you find it awkward. Or practice saying something you're comfortable with.

I can't imagine what you're going through. Please believe you will cope, you will get to a better place. People do want to help. 

Kind regards, gamechanger.

[@SamB123]‍ I hope you have had your surgery now and your recovering well. I too have had and been treated for Vulval Cancer. If you need to chat any time please feel free to add me as a friend and drop me a message. Take care. X 

Thank you yeah ops all done but struggling with the aftermath of it all x

Hello ladies, 

I am currently being sent for a biopsy with suspected vulva cancer

 I'm only 26yo and have a beautiful husband and daughter. I've suffered with pain and open sores for around 1 year now but was told I had.open sores due to thrush and was too young to suffer from vulva cancer.  I new myself it wasn't right as it was continuous pain. I've really got myself in a state and don't know where to turn.  How are you ladies now? How has recovery been? What happened when you first got referred.

Hi, I understand where you are. I am currently waiting biopsy results have a hospital app to go to this week to discuss and am pretty worried what they may tell me. I have been diagnosed with lichen sclerosus and vin and had a area removed and sent for biopsy. I was in pain on and off and knew something wasnt quite right. I'm finding there isnt very much information about vulva cancers. 

Hi I was diagnosed with ovarian cancer two years ago. Just started my second lot of treatment a few weeks ago. I was told there was no thoughts given to stopping anyone's chemo so I am just grateful that things are going ahead for me. It is such an emotional rollercoaster when you are first diagnosed but you will find a path through. Take care.