HPV Virus and my battle - my depression - my worry

Cervical screening results
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Hi, am new to this forum and am really pleased to find a group that actually discuss's pre cancer scenarios also.

I am a 46 year old woman, and for the last 5 years have suffered with AIN 3, VIN 3, have had areas removed from my bottom, involving plastic surgery, and have had a vulvectamy last July with plastic surgery,  where they tried to save my clitorisis at least,  but had to have that removed in December. Have had 9 surgeries in last year for biopsies and excisions. Some of the biopsies have shown signs of micro invasion.

In February this year after healing from the surgery in December, I went and had my check up with the consultant, and actually my vulva felt good enough that they could do my smear with out me having to have aneasethic. So the VIN and AIN was looking good.

Had smear results to say moderate changes.

Had a LLETZ on 3rd April, as well as biopsies. The VIN was back and also now in my vaginal wall also. MyLLETZ showed there was no cancer on the cervix however there was HPV invasion.

I saw my gynae oncologist on the 17th May - she has now said that they cannot rule out a lesion in the canal and that I need to have a hysterectomy. Also whilst that is happening she will do more biospsies of the VIN, AIN and VaIN. Also she has told me that it is extremely unlikely that I will ever have a normal smear test reading.

 

I guess what I am trying to find out or feel a little more reassured about is whether I am making the right decision. If I am never going to have a clear smear am I having more sugery and putting myself through the change as ovaries going for no benefit? Is my history indicating that there could be serious issues going forward? How definate would she need to be that there is more in cervical canal than indicates to put me through a hysterectomy? I have had so much done over the years, never to be clear of it, every time I have biopsies I worry whether I am going to have cancerous cells, as have been told very clearly that the VIN looks like it will turn cancerous at some point by the consultant in Exeter.

This has had a huge impact on my life, I am depresaed, it has impacted me losing a job I loved because of the amount of time I had to have off for surgeries. I do not feel like a woman anymore, my sex life with my husband has disappeared, not just because of me now, he had a radical prostectamy in February for prostate cancer too. I just want to feel normal....

 

Any advise or words of encouragement would be greatlyu appreciated.

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Oh my goodness, you really have been through a hell of a lot, haven't you? I am so sorry to read your story. Your situtaion re AIN and VIN is different to most of us on here, but it sounds very distressing. Sending positive vibes, for what its worth. :)

With respect to the cervix, HPV is a very common virus and in itself isn't something to worry too much about. The possibility of a lesion on the canal is a different matter though - assuming they mean that there may be something going on in the canal that leads up to your womb. I had that kind of lesion and was told that they can occur in more than one patch at once which is why they recommend the hysterectomy. I can't tell you what to do, but I think it is important to get as much information about why they are suggesting this and what the risks really are before you make a decision.

You situtaion is so complex, I reckon you might find it helpful to contact the Jo's Trust Ask the Expert service. They should be able to give you the clinical guidance you are looking for.

Anyway, all the very best of luck with the road ahead - many of us know only too well how this kind of treatment can make you feel and we're rooting for you.  xxx

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You have been through so much and my heart goes out to you. It is no wonder you are feeling down and depressed - it is a very normal reaction to everything you have been and are going through.

Do you know which HPV type you have? I just ask because if you have 16 or 18 would you be elligiable for the vaccine? I know it wouldn't treat any current infection but it may prevent reinfection.

I wish you all the best and hope they find a treatment that destroys HPV soon.

 

J xxx

 

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Hi Jessica, 

Like me, Rosehip has had a radical hysterectomy, so has not got and cannot get HPV any more. HPV is a localised virus - meaning it stays in one place: the cervix - and does not live in the blood stream. If you haven't got a cervix, you can't have HPV, so a vaccine would be meaningless in this situation. 

Also, to set your mind at rest about the possibility of re-infection, once you've had and eliminated HPV, your body is immune from that particular strain, so you cannot get it again, even if you do stlll have a cervix.

I hope this helps clarify things.

Love, Annabel. x 

 

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Sorry - just realised you probably weren't replying to Rosehip - it showed up as a reply to her on the thread, so with my lack of sleep I think I got confused about whom you were addressing!! Oops! Xx