Diagnosed with stage 3 vagina cancer on 3rd december

[Pupils1]

I found a lump on left side of my vagina after having hysterectomy 12 years ago my gp assumed it was scar tissue build up but I sensed it wasn’t right

I am desperate to raise awareness of this rare cancer I only had 1 symptom of it since my diagnosis I am shocked that my friends and female family members are not aware to check for vaginal and vulval cancers some don’t even know what a vulva is .

I know it’s not something people like to discuss but I feel so strongly about increasing awareness .

[Perido]

I haven't had the same experience as you; however I can empathise with the shock of getting a gynaecological cancer diagnosis. I was diagnosed with stage 2 cervical cancer in 2017; sadly I didn't keep up to date with my smear tests partly because of undiagnosed and untreated vaginal atrophy which meant the procedure was extremely painful for me.

It's great that you have posted about your experience and as you so rightly point out there is a lot of ignorance about gynaecological health including just knowing what a vulva is.

I've done a lot of reading and awareness raising since my diagnosis and treatment (which has left me with some long term debilitating side effects) and it seems to me that gynaecological health is massively underserved in the UK. I feel strongly that gynaecological health care warrants regular (?annual) check ups with a specialist in much the same way as we accept routine dental appointments with a dentist are important. There are so many benefits that regular gynae check ups could offer compared to the current, and somewhat minimalist, service of a smear test every 3 or 5 years with a non-specialist. I have met some non-UK ladies who tell me that regular gynae checks with a gynaecologist are the norm in their countries and, although not free, come at a competitive cost.

There is a petition which I feel is very worthwhile and addresses the above issues - see following link: change.org/p/minister-for-w...

[Pupils1 in reply to Perido]

This is fantastic reply and the petition link is useful thanks so much for sharing your story I appreciate it so much

[clareB43]

I started my own awareness after I was diagnosed with vulval cancer as no one had heard of it and you don’t see much as rare.

I also help raise awareness of vaginal cancer.

[Pupils1 in reply to clareB43]

That’s great I am doing all I can to help raise awareness if it helps only 1 person I be happy . Do you mind me asking what stage your Vulval cancer was and what treatment you had I having surgery in January

[clareB43 in reply to Pupils1]

Was stage 3c , had 16 months of treatment. 4 surgery’s and radiotherapy twice.

[Callumlee123]

Hi I’m real sorry you had to go through this with no awareness

I do hope you will be ok. I’m worried I have vagina cancer as my biopsy of cervix in November showed cin2 and high risk hpv but since then I have a huge hard lumpy mass coming from behind my cervix high up the vagina and overlapping my cervix. Today I went to check with pictures and noticed the opening of my vagina has a lot of excess tissue . I have put a post up with image and would really help if you could look and tell me if this is what you first had .

Thank you