Vin stage 3

Hi

This is a long one.

i am looking for some help advice as I feel so down now, and mentally feel like I am failing.

I had a wide vulval excision in august 2019 had my first screening in December 2019 by February 2020 I was bleeding and sex became unbearable then covid hit and screening was cancelled I saw my GP in December 2020 and she agreed that the Vin was back so referred me as a new patient and I was seen and a biopsy taken confirming Vin stage 3 due to confusion at the hospital as the consultant had left and being told I would have to wait 4 months to be seen I went private to have the vin removed this time is was at the pirimeum, and also had a fentons procedure as the scar tissue was hurting this was done in April 2021 same surgeon who had operated before so he wrote to the NHS stating what he had done and that I needed screened. My screening is due but no appointment saw my GP as I have terrible pain she has said there is a granulation and looks like vin cells are back again. Called to request I get my screening to be told to get refered as a new patient as I will get an appointment quicker. But just walking hurts it feels raw or like a burn or blister  also having urine infections and not sure what to do as I don't want to get any further down mentally .

thanks in advance 

pauline 

  • Hello and thanks for posting

    I am sorry to hear all you've been through and how low you are feeling in yourself at the moment.

    I would encourage you to talk to your GP again and let them know how you are struggling and see if they can speed up the referral back to the specialist team for you. In the meantime they may be able to suggest some things to help manage the pain and discomfort you are having to try and ease things for you.

    There are a few different support groups out there that you may want to connect with including The Association for lichen sclerosis and vulvar health and the facebook group Vulvar Intrepithelial Neoplasia UK support group. Sharing and hearing from other people who have or are going through something similar can be really helpful at times like this.

    You are very welcome to call one of the nurses on our helpline if you want to. The number is 0808 800 4040 and it's open Monday to Friday 9-5.

    I hope you are seen soon and you start feeling better soon.

    Take care

    Naomi

  • Thank you for your reply I have requested to join the Facebook group and have an appointment on Friday so will hopefully know how this can be resolved thanks again Pauline xx