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VIN1/koilocytosis

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GGG
VIN1/koilocytosis

Hello, I am 37, history previously normal smears, I developed a area that was sore on the vulva which I didn't think much of but it was reviewed in colposcopy and come back with a diagnosis of VIN1/koilocytosis.

The hospital have just sent me a letter with the above and a follow up in a year.

I have been reading about the topic and not very clear guidance and such variable treatment plans and no support groups.

I have a young child, am just so anxious, in floods of tears daily and petrified - also not sure if the waiting for a year is correct. Very little support from hospital.
I wonder if anyone has experience with VIN1?

Prayers and hugs,

X

Jazza
Jazza's picture

Hi GGG

So sorry you are going through such a difficult time, I can certainly empathise with your distress.  This forum really only covers cervical abnormalities/cancer; The Eve Appeal offers help and support for all the gynaecological cancers including the vulva.  Here is a link for their website:

https://eveappeal.org.uk/

Best wishes

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
55

Hello

Sorry to hear you are so worried and also add to Jazza's post; you may find other people with experience of Vin1 on the MacMillan forum. MacMillan also has a helpline where you can talk to a nurse. Remember Vin1 is not cancer. You could also ask for support from your gp practice. Hope this helps

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result - June 2020 repeat colposcopy & pap - all clear - discharged from hospital - next smear in 3 yrs Back again August 2020 following post menopausal bleed; more tests! Turned out to be hormonal/menopause related but they also discovered a small ovarian cyst which they will check again in 4 months; cyst was not related to bleeding

55

Hello

Sorry to hear you are so worried and also add to Jazza's post; you may find other people with experience of Vin1 on the MacMillan forum. MacMillan also has a helpline where you can talk to a nurse. Remember Vin1 is not cancer. You could also ask for support from your gp practice. Hope this helps

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result - June 2020 repeat colposcopy & pap - all clear - discharged from hospital - next smear in 3 yrs Back again August 2020 following post menopausal bleed; more tests! Turned out to be hormonal/menopause related but they also discovered a small ovarian cyst which they will check again in 4 months; cyst was not related to bleeding

More Information

Treatments for cervical cancer