Asking for help

My dear Aim45,

My heart goes out to you.  I had the exact same operation yesterday in 2023 the radical vulvectomy and removal of clitoris.  All cancer removed and no further treatment needed.  Like you, I was elated.  My body healed after a while but my mental health was a struggle as I felt that my femininity had gone.  The loss of my clitoris and lack of orgasm is difficult.  My husband is so understanding but sex is uncomfortable due to vaginal discomfort.  I also feel like I am being selfish as I am cancer free and grateful for that.  I feel like I shouldn’t complain.  I suppose counselling would be available but I don’t want any more appointments than necessary.  Have you mentioned this to your GP or nurse?

you are not alone and I send you hugs.

Elaine

Thank you for letting me know I'm not crazy. I'm glad to hear you are healthy and I wish you the best. 

I too had vulva cancer. In January this year I had a full radical vulvectomy and removal of lymph nodes. My cancer was from Lichen Sclerosus, so sex was very painful. I recovered from surgery ok, but im left with lymphadema in my lower stomach and nerve pain in my thighs. I can't go back to work yet, as i can't stand or walk for long. It's hard to come to terms with the life changing body changes plus the post surgery issues. I can understand where you are coming from, the nerves would have been removed from surgery.  I also have noticed I pee different as I think my urethra was moved to the vagina opening

I had cancer last year. I had op in August. I was in hospital for a week as I had lymth nodes taken out both sides. I healed fine. I was back at the gym Nov, then swimming by dec. I was back to being super fit and happy, then mid dec I got a lump in my groin, my surgeon  drained it, said it was lymph fluid, and chucked the needle in the bin. Anyway this want on for a good couple of months. I then got admitted to hospital, I had a puncher biopsy and that’s when Wham I was being told I have stage 4 cancer. I blamed them, as I feel the team have let me down big time. I had 5 chemos and 28 RT, I think the last 10 I cried saying I can’t do it anymore. I got admitted to hospital after about two weeks into treatment. It’ was best decision  all round. I am out of hospital now, I have 2 nurses that come in to help me with my wounds. They coming in morning and tea time  I have been out nearly two weeks. I can’t even look at my bits. I know longer feel like a women. Do you think I will ever get over this

thanks ️

I am so sorry you have been through this.  I had my radical vulvectomy, removal of clitoris and two lymph nodes.  Fortunately I didn’t need any further treatment.  I too was feeling less of a female and shocked when I eventually looked down there.  Have a few weepy moments still, two years on.  Will we ever come to terms with our changes, I don’t know.  Sending love and good wishes to you.

Im not where near been healthy or fit. I had 9 lymph nodes taken from my left groin and 5 from my right. My stomach swells really bad throughout the day. Even my consultant, lymphadema nurse and doctor say its only early days. Sorry to hear what has happened to you. I do worry if mine will come back

So sorry to hear you’re going through such a hard time!! It’s hard coming to terms with this type of operation as a woman  It takes away all of our feelings of how a woman should look, I hope you are soon feeling better xx

So sorry to hear that you are going through this, i am 3 years post radical vulvectomy, lymph node removal and thankfully given the all clear, but still coming to terms with the changes, I am grateful to have been given the all clear obviously but I don't think anything prepares you for the psychosocial hangover that you are left with. There is limited support for that bit of the journey, counselling with Macmillan is limited in my experience I was offered 4 sessions. time does help, but like ex Lancashire lass i still have teary times, which i think is normal. I wish you all the best with your recovery. x

Hope you don't mind me asking, do you suffer with lymphadema and nerve pain. Im 8 months post surgery, I had the same as you

Hi

I had problems with healing where they took lymph nodes from, one side got very badly infected, so didn't heal as well as the other side, but no i do not suffer with lymphadema, I did have nerve pain, badly initially and it did go on for months but to a lesser degree as time went on, and even now occasionally I still get it. i was told it was normal and to be expected.