Life after hemivulvectomy

Hello Fliptoptoe  I have just come across your post and noticed you haven't had any answers (I can't answer it as I have a different Cancer - and am male!). However by me replying your post will be "bumped" back to the top of the forum and be seen by other Community members who I hope will reply.

I must say you have done very well with your treatment and am sorry to read about your feelings after surgery. Can I make a couple of suggestions:

* Do you have a "Maggie's Centre" near you. Maggie's is a cancer centre and you will find plenty of practical advice there. To find your nearest, 0300 123 1801 or enquiries@maggiescentres.org or www.maggiescentres.org

* For that little bit of extra help give our helpline a ring on 0808 808 00 00. The lovely people there will be able to point you in the direction of that little bit of help you need.

I hope the above helps.

Best wishes - Brian.

Hi Fliptoptoe 

I’m glad to see you’ve come through your surgery, but sorry to see how you’re feeling about everything now. I have some understanding of how this feels, though I had cervical cancer, because I had major surgery and had my vagina removed among many other bits. 

I’m going to tag Ex Lancashire Lass because I’m hoping she might be able to come along and offer some words of advice. I know how valuable it is to chat with people who’ve had a similar experience.

Sarah xx

• Hello Fliptoptoe, Yes, I had a radical vulvectomy, including clitoris, in June, like you it was a melanoma.  It was a massive shock, especially as I assumed it was only sun damage that caused melanoma.  The surgery went well and at my first checkup I was told that no further treatment was necessary.  What a relief, isn’t it?  
• It took me over three months to pluck up the courage to look at my operation site and it was such a shock to see how I looked.  I didn’t feel like a female any more and, without the clitoris, I didn’t think I would ever be the same.  I haven’t looked since.
• I am a constant worrier too, which doesn’t help my mental health.  Each twinge, spot or itch anywhere on my body makes me wonder if “it” has returned.
• I am awaiting results of tests after the draining of a cyst where a sentinel lymph node was taken from my groin.  The drain was 12th November and no results yet. I have another check up with surgeon in February, so hope to find out.
• Feel free to message me any time you need.  We can help each other and I can hold your hand.
• sending best wishes.

Thank you for tagging me

Thanks so much for sharing your story-and that’s a lovely offer to help out Fliptoptoe .There is  really is nothing to compare to sharing common experiences to help us get through. I had surgery almost 4 years ago but have never taken a mirror and had a look. I thought one day I would, but that day hasn’t come yet! I suspect it never will, and that’s ok. It’s really hard for all of us having surgery in that area.

Sarah xx

You are welcome, it is good to share our experiences, helping each other.  As you say, everyone is different and it is OK to look, or not look.  I don’t anticipate doing it again.  
Thank you for your kind comments.

Thankyou thankyou thankyou. You are the first person I have spoken to who has had the same op. Apparently very rare so lucky us haha. It is the loss of the clitorous that upsets me the most and I know it shouldn't. Sex wasn't a huge part of my life before the op but I just feel less like a woman now and I have had a quick look and was horrified so won't be doing that again in a hurry. How are you coping with the change and how are you doing now with your feelings about it all ? Please feel free to contact me if you need a shoulder to moan on. I was so pleased to be able to speak to someone who knew what I was feeling so hopefully I can help you too xxx

Thankyou for your reply. I am so grateful to talk so people who really understand and please message me if you need to talk too xxx

Hello again, yes it is a relief to talk to someone who understands how we feel.  After replying to you yesterday it brought my feelings to the surface regarding the perceived loss of womanhood, my tears flowed, so obviously I haven’t come to terms with how I look and feel.  I suppose I will accept it all in time.  The physical healing has gone well and the discomfort when sitting has eased now, although I still sit on a cushion on a hard chair.  I just have to work on the mental healing. xxx

I've still it all to go, I'm seeing oncologist on the 17th January, then hopefully I will start my treatment the week after, I'm having misgivings on not having the operation. I'm very sore at sitting down, I'm getting fed up with tge waiting for treatment x