Itching

Hello GeekyGilb

Welcome to the Online Community and the Vulva cancer forum.

I am sorry to hear of your diagnosis of cancer and can understand what a worrying time it is.

I hope that your PET scan goes ok on Monday and that from that you will soon know what will happen next with regards to treatment.

The itching must be driving you made. I would suggest consulting with your doctor to see whether there is any treatment/ creams that could be used to help control the itchiness. I wonder whether it is worth asking whether it would be ok to take an over the counter anti histamine perhaps.

There is some general advice here- but suggest you go straight to half way down- where there is some general advice on treatments and care. It may help control some of the itching until you have treatment.

Itchy Vulva (Pruritus Vulvae): Causes and Treatment (patient.info)

Hope this helps a bit.

Jane

Hi GeekyGilb and welcome to the group.

I had a different hpv driven cancer-mine was cervical- but I haven’t had the itching you are experiencing. I have however had a petscan, so in addition to Jane’s helpful advice I hope I might be able to reassure you about your upcoming scan.

I am claustrophobic, so can empathise with your mri experience-I find them very difficult. Luckily the petscan is much easier! 

Before the scan, you have a radioactive tracer put into your body via a cannula and then need to sit quietly in a room moving as little as possible. This allows time for the tracer to work its way round your body. After this you are taken for the scan and are not enclosed at all as you are in the mri. You lie on the table as the machine moves up and down over your body taking its pictures. This didn’t take as long as the wait for the liquid to go round my body which took about an hour. The scan itself was much quicker. 

I have had many scans of different types during my cancer diagnosis, treatment and beyond, and the petscan was very manageable so I hope you find the same and that the scan goes smoothly for you. I also hope you can find a solution for your terrible itching, which must be driving you crazy.

Sarah xx

I was presribed an ointment by my consultant as I get itching due to lichen sclerosis - which can be a pre cursor to vulval cancer. It’s a steroid which I apply twice weekly - at night. It’s Clobetasol 0.05% ointment. 
I hope that helps?

Hi, I’m sorry to hear your news about your vulva cancer and difficult scans. I’ve had vulva cancer operated on in November last year but was lucky not to require further treatment following my operation although I’ve developed a fistula following an infection in one of my open wounds. At present I’m seeing how I can cope with this rather than have another 2 operations to fit a temporary stoma bag. With regards to your itching there is an ointment my mother had given to her for her lichen sclerosis and the itching She suffered which has helped her cope with it, so I would suggest you discuss this with your Gynae Dr or your GP. I hope your PET scan goes well and you find this forum helpful to you 

Take care

Deb

Hello GeekyGilb,

I can fully sympathise with the awful itching, I had the same and it was horrendous.  My GP prescribed a steroid cream which really helped.   By now I hope that your itching has stopped now.

I was also diagnosed with cancer of the vulva and had a wide excision op and bilateral lymph node removal.  Fortunately no further was needed after my operation in June 2023 but have to have regular checks, one of which was today.

How are you now?

Sending hugs and positive thoughts.

Hi to all who have replied.  I'm dealing with the itching by keeping it cool which is doing well.  The nights are hardest as I wake up thinking oh I'm almost scratching it.  Ive got Diprobase which I haven't tried yet but will soon. :)

I itched like crazy between the 2nd and 3rd surgeries and ended up developing lichen simplex chronicus. The only thing that helped the itch was estrogen cream 

Thinking your thrush over the years may have been lichen sclerosus. The only treatment is topical steroid which tackles flare ups and resolves the itching. Recommend following Clare Baumhauer and vulvalcancerukawareness. 

Sending best. 

Ask your doctor for premarin