quote:

ORIGINAL: MariaB

We are told to check our breasts once a month but how often are we told to check our vulva?
For anyone who isn’t sure what the vulva is, it’s the entire triangle from the pubic mound down to the anus.

I didn’t know that the nurse who does our smear test always checks for skin changes on or around the vulva. I now know that the nurse who did my last smear probably saved my life.

I hadn’t noticed any changes and neither had my husband, who happens to know my intricate parts intimately. It was so subtle; just a small white mark that stretched along my perineum. It wasn’t raised, it didn’t hurt or itch and when I looked at it through a mirror after the nurse told me about it, I reassured myself that it was just an episiotomy scar.

I had an appointment with my gynecologist about ongoing ovarian cysts so I decided to mention it to her. She reassured me it was probably an episiotomy scar like I thought but just in case, would do a couple of biopsies. A few weeks later I was called back; that’s when I knew they’d found something. It was early stage cancer (1b) which meant I’d need to have what’s called a partial vulvectomy. I was booked in for the following week and told I’d need to take between four and six weeks off work.

I’ve been tested for the HPV virus (the thing that is most likely to cause this type of cancer) but both tests have come back negative. That doesn’t mean I don’t have HPV or that I’ve had it at some point in my life. HPV sometimes doesn’t show up on a biopsy and you can have HPV for years without any symptoms. My doctor told me that 70% of sexually active adults will have or had HPV at some point during their lives and because its now so common, this type of cancer is on the up. Other things can cause this cancer but its rare for it not to be the HPV virus and it has to be a certain type of HPV virus for it to cause this condition.

The good news is, its slow growing, it starts as VIN1 which is pre-cancerous cells and can take years to go from that to VIN111 (still pre-cancerous) but once it reaches VIN111 things start to accelerate into true cancer.

The reason I’m speaking out is, us women need to be aware of this type of cancer. We need to check ourselves regularly down there for skin changes. For some women it will start to itch, mine never did. A vulvectomy isn’t the end of the world but I wouldn’t wish it on anyone. What woman on this earth would want to have her genitalia mutilated? Unlike breast cancer, it’s a difficult thing to talk about. I had to explain to friends and family what the vulva was. It wasn’t only embarrassing, it was humiliating and made me feel dirty.

The other good news is, the further investigations and biopsies they did whilst I was in surgery have come out with clear margins, I’m in the clear and I’m feeling positive. I'm just so thankful I went and had that overdue smear test when I did.

quote:

ORIGINAL: Nthrall

Am I right in thinking that some vulvectomy procedures involve the removal of the clitoris? Ouch! This must be awful for the women, and quite annoying for the men who have only just found out where it was. I'm glad you came through it all successfully. Clearly it behoves men and lady partners to spend more time down there. I shall include a torch and magnifying glass in my toybox, and possibly also a safety razor.

quote:

ORIGINAL: Ed28202

Thank you for having the courage to post this. It is imperative that this and other life saving information is shared with facts and not just opinions. Men and woman need to feel comfortable enough to share when something does not look right just as it is important to share when things feel good and your partner is pleasing you.

quote:

ORIGINAL: MariaB

We are told to check our breasts once a month but how often are we told to check our vulva?
For anyone who isn’t sure what the vulva is, it’s the entire triangle from the pubic mound down to the anus.

I didn’t know that the nurse who does our smear test always checks for skin changes on or around the vulva. I now know that the nurse who did my last smear probably saved my life.

I hadn’t noticed any changes and neither had my husband, who happens to know my intricate parts intimately. It was so subtle; just a small white mark that stretched along my perineum. It wasn’t raised, it didn’t hurt or itch and when I looked at it through a mirror after the nurse told me about it, I reassured myself that it was just an episiotomy scar.

I had an appointment with my gynecologist about ongoing ovarian cysts so I decided to mention it to her. She reassured me it was probably an episiotomy scar like I thought but just in case, would do a couple of biopsies. A few weeks later I was called back; that’s when I knew they’d found something. It was early stage cancer (1b) which meant I’d need to have what’s called a partial vulvectomy. I was booked in for the following week and told I’d need to take between four and six weeks off work.

I’ve been tested for the HPV virus (the thing that is most likely to cause this type of cancer) but both tests have come back negative. That doesn’t mean I don’t have HPV or that I’ve had it at some point in my life. HPV sometimes doesn’t show up on a biopsy and you can have HPV for years without any symptoms. My doctor told me that 70% of sexually active adults will have or had HPV at some point during their lives and because its now so common, this type of cancer is on the up. Other things can cause this cancer but its rare for it not to be the HPV virus and it has to be a certain type of HPV virus for it to cause this condition.

The good news is, its slow growing, it starts as VIN1 which is pre-cancerous cells and can take years to go from that to VIN111 (still pre-cancerous) but once it reaches VIN111 things start to accelerate into true cancer.

The reason I’m speaking out is, us women need to be aware of this type of cancer. We need to check ourselves regularly down there for skin changes. For some women it will start to itch, mine never did. A vulvectomy isn’t the end of the world but I wouldn’t wish it on anyone. What woman on this earth would want to have her genitalia mutilated? Unlike breast cancer, it’s a difficult thing to talk about. I had to explain to friends and family what the vulva was. It wasn’t only embarrassing, it was humiliating and made me feel dirty.

The other good news is, the further investigations and biopsies they did whilst I was in surgery have come out with clear margins, I’m in the clear and I’m feeling positive. I'm just so thankful I went and had that overdue smear test when I did.