VAIN 3 - Awaiting a Multi Disciplinary Meeting

Anyway it was about the supplements I take including AHCC, but for some reason its not posting .Hope the MDM gives you some answers though Xx

Thanks for the response. I was due to go to the hospital the Wednesday just gone. But they cancelled the clinic and pushed me back a month til the end of April. Then they called the other day to advise I shouldn't be waiting that long so I'm at the hospital tomorrow. For another colposcopy I believe. I'm hoping it's just another so the consultant can decide on the course of action.

After your colposcopy were results just VAIN3 or cancer as well? Can you elaborate on what the SCC tumour was?

Thanks!

Hi Debs P 

Sorry-I don’t know, but anyone can look at the forum and can “flag” a post which effectively blocks it by removing it from the site. The moderators don’t discuss this with members so it’s hard to know, but I haven’t flagged anything here. 

You’ve mentioned natural supplements, so it may be that, but there’s no way to tell I’m afraid. It may be that the filter has automatically caught something and it won’t post. 

Sarah xx

I replied to you but my post has also been held back so won’t post at the moment-sorry!

Sarah xx

It was a squamous cell carcinoma tumor which was  hpv connected. It was originally thought to be 2cm on the back wall of the vagina but ended up being 4cm. Becausecit wasnt on the cervix it wasnt detected by the smearvthey took at the same time as the colcoscopy. There were VAIN3 cells in the margins and the front wall of the vagina too.

Hope it goes well tomorrow xx

Ah ok. Thank you xx

Check back-you may find all your posts are there now-might have been a gremlin in the system today!

Sarah xx

Thanks for the info. I'll pop an update to my journey here after my appointment tomorrow.

Glad to hear you're doing alright as well. Hopefully your scan in April will be good news.

Hi All,

I had my meeting with the consultant. This was another colposcopy and she had a good look around. There are several areas affected with VAIN 3 it seems, lots of white patches.

She will be booking me in for a vaginal mapping under general anesthetic to assess all the areas affected and to take biopsies to confirm it is just VAIN 3.

Hopefully have the procedure in the next few months.

She anticipates that treatment will be with imiquimod cream, but will decide when the biopsies come back. She said surgery could be tricky due to the location of the abnormalities.

Hi, I’m so sorry to hear that you are going through this. The waiting for answers seems to be the hardest part.

I’m 34, had abnormal smear in 2020, colposcopy found HPV and CIN1. Clear smear in 2021, abnormal smear in 2022 followed by colposcopy and LLETZ for CIN1 in 2022, had my son in 2023 then had another clear colposcopy in 2024. Had bleeding after sex this January, went to see the gynaecologist and he removed a vaginal polyp next to my cervix. The polyp came back as cancerous.

They were very surprised by the result. I had a colposcopy again and found CIN1, but nothing more. my case was discussed at the MDM yesterday and I had a call today to say my MRI and biopsy came back clear (the PET results haven’t come back quite yet) but they believe I’ve now been downgraded to VIN 1 and CIN 1. They are currently advising a radical hysterectomy but due to my age, if I want more children I can delay and have laser/LLETZ again to prevent.

I’m just really interested to see how you get on, what opinions and options are offered and would really like to follow your journey along if that’s ok.

In comparison to what I was gearing up for last week (they told me at first app that it was likely stage 4 cervical cancer and I would likely need radio & chemo etc) I’m seeing the hysterectomy as a bit of a better of two evils. I’m nervous and I’d really like to find out more info about the hysterectomy so that’s what lead me to this page. If it means this nightmare can be over and it can’t come back again I’m happy with that outcome.

Hope you are doing ok. This whole things been a completely mind f**k so can only imagine how you’re feeling waiting until the end of the month for answers!

Take care, 

M x