Vulval cancer diagnosis

Hello Lisa, I was diagnosed in 2022 with vulva cancer. I had WLE to remove the tumour, but because I had caught Covid and my operation was delayed the tumour had grown and I had to have a second op to remove lymph nodes. They advise you to avoid lifting, driving and housework (hubby was not pleased about the last one) for 6 weeks.  The hospital encourage you to move as much as possible and I did lots of walking. Ask your MacMillan nurse about the running, maybe you can start with walking and build up to running, they will be able to advise the best way to proceed.  I can honestly say I did not have any pain following these operations. I was given pain killers which I took but once I got home I started stopping them and was fine. 
When going through my diagnosis I had many tests, scans, X-rays and ultrasound this is to see if there is any spread but to also check you are ok health wise for operation. I am now in my 3 rd year from my operation and now on 6 monthly checks. Hope this helps but if you want to ask anything else please message me.

Im just recovering from surgery, I had cancer of the vulva. I've had a full vulvectomy and the removal of some lymph nodes. Healing good, only had to go back yo hospital once, i had some swelling in the left groin. Four weeks on Thursday since my operation. I had a ct scan in 3 areas, chest,  abdominal and pelvic,  it hadn't spread. Waiting for my follow up with results from lymph nodes. I haven't  experienced any pain, just some numbness in my right thigh 

Hello Lisa,

I was diagnosed with vulva cancer/melanoma in 2023, had a radical vulvectomy WLE, removal of clitoris and bilateral lymph nodes.  I was also told not to lift anything or do housework etc for 6 weeks.  Build up walking but nothing strenuous.  Walk about every hour, no underwear and wear compression socks until your walking is back to normal.  I had more pain before the surgery than after, apart from discomfort sitting (and still sit on cushions if on hard chairs.) Slight swelling in one groin, which was tested and just clear fluid.  All cancer removed and no further treatment needed.  Routine CT scan was all clear.  Now on 6 monthly check ups.

I didn’t run before my op. so cannot help you there but your surgeon/Macmillan nurse will be able to advise.

If you have further questions please ask.

Hope all goes well.

Elaine x

My cancer and surgery is like yours, I'm nearly 4 weeks into recovery 

Hi Lizzy58, 

It’s a relief when the op is over.  Good luck with your recover.  Listen to your body, test when needed. I hope all goes well.

Thank you. And to think this all started with Lichen Sclerosus, had a open wound in the vulva area what would  not heal 

Hi Lizzy I was just reading comments and saw yours relating to lichen sclerosus. I'm awaiting my referral to come through to gynae as they suspect I have this on my vulva. It's been there for a while now just wondering if you don't mind telling me about your symptoms. Mine is extremely raised, white patches, itchy won't heal. Completely different to the other side. Everything that touches it makes it worse.

Sorry for the late reply. I was diagnosed with Lichen Sclerosus about 8 years or so. It was in the vulva area plus the perineum area. It was constant itchy, sore, skin splitting, creams didn't do much. Then last year I noticed a open wound on the vulva area, it wouldn't heal. So going to the doctors then gynecologist twice, to a biopsy, which then confirmed it was cancerous. Luckily it was early stage and hadn't spread. I then went on to have a full vulvectomy and removal of some lymph nodes. I've had my follow up, cancer all gone and lymph nodes were negative. Just on recovery now.

Hi Jemberlina88 

This guide was posted recently about LS, and I’m putting the link back up here in case it might be helpful for you or any of the other ladies in the group.

Lichen Sclerosus Guide

Sarah xx

Thank you for replying. I'm still awaiting the referral to gynae.

Yes sounds very similar to my symptoms and that it has . How long did it take for your referral?

I'm going out of mind with worry. 

Glad you are on recovery and it hadn't spread.