Vulva cancer

Hi Scottybear, 

I’m sorry to hear you’ve been diagnosed with VUlla cancer. I too was messed about by my GP saying it was just a sore for a couple of years. Luckily after I went to a 111 Dr she took one look and referred me to Gynaecology department. That was on the Friday and the following Saturday I had biopsies taken and was diagnosed 2 weeks later, this was in June. My operation was done in November as I had to have further tests before I was admitted due to my other health issues. 

I had a partial vulvectomy and both Left and Right lymph nodes removed. Luckily all Cancer was removed and no further treatment required as it hadn’t spread to my lymph nodes. 
I did have an infection in my drainage holes from lymph nodes which needed 3 lots of antibiotics but that’s healed now. It took 6-8 weeks for healing process. I’ve had further problems due to an infection in an open wound causing a fistula and I’m being referred to a bowel specialist now to repair this. 

I have some water retention in my left leg but not severe which I’m being referred to lymphoedema clinic. 

I hope this gives some clarity

Kind Regards 

Deb

Oh wow I’m so sorry to hear ur going thru all this I’ve got to admit I’m taken quite quick for my op after diagnoses but I waited 3 years for them to then say we will refer u this cud have been prevented if they checked after 1 yr like they were meant too. Hope u get better soon n make a full recovery 

x 

Hi , sorry to hear that you have been diagnosed with vulva cancer, I was also diagnosed in Dec 23, I had reoccurring vaginal thrush, as you know trying to get a gp appointment since covid is near on impossible,  they would diagnosed by phone and they would prescribe creams etc.

Wasn't until my gp rang to explain to me that I was being sent to see a urologist due to poor kidney function,  he asked how I was feeling in myself and explained about the reoccurring vaginal thrush that he made me an appointment for the following week,  were he found the tomour, it's sat on my perineum and attached to my annus,  went 2 weeks later for biopsy,  the following week for results, mri scans petscan before I went to see gynaecology oncologist,  she explained that I was stage 2b, and I had 2 options, 

1 : major surgery, which would leave me a permanent stoma bag,

2: radiotherapy with chemo , I took this option 

Went to see oncologist and he talked me threw what would be happening,  

I will have radiotherapy 5 days a week for 5/6 weeks with chemo on the Wednesday for same amount of time,

This starts 12th February,  

I have had a full hysterectomy 25 years ago, not sexually active for 10 plus years, .

Didn't have cervical smears since hysterectomy. 

Don't know why they have said it was a hpv ,

Things should be done for early diagnosis,  I had never heard of this before,

Hopefully you will get the answers you require on this site, has its been very helpful to me and my family x

Oh I’m sorry ur going thru this it is really hard to take in I got the hpv smear test bk then a few months after that I found lumps docs always told me its genital warts but 3 yrs was fine also to get tested again but even my own gp was puzzled as it shud have been 1 yr after I’m angry cause I’m sure it might not have been this way if they had tested me but I go on the 12th for op my lumps are all over espesh on the Perinaum and the anal I have been told that I may not need anymore treatment after the op but they will also do more biopsies as they only taken 2  cause they said they wud rather know what they are dealing with before they take more. 
I hope all goes well for u with ur  chemo and radiotherapy I will be thinking of u xx

Hi hun, have they told you what the surgery entails , because my tumour is attached to my annus they said I would have a stoma bag for life, if it was just a normal operation I would have probably done it xx

They just said it will be removal of the abnormal areas of the vulva more biopsies and one on the natal cleft will be removed also with plastic coming in for that to be closed over the lesions on the perianum has started connecting with the anus so I’m not sure till I go for my op nxt week 

Xx

Are you uncomfortable when sitting and urinating,  get your gynaecology to give you a px for lidocaine ointment,  it numbs the area and also but eperderm on to keep it soft, I feel your pain, I'm only comfortable on my side and sat on a memory foam cushion,  cannot wait to have Mrs cauliflower head gone lol

Yes really uncomfortable I have to either side on one bum cheek or lie down half the time and I will ask on mon for something to help with the pain the itch is also really unbareable doesn’t help maer that I have incontinant issues too  so it’s constantly stinging and sore where did u get ur memory foam pillow please xx

Got my cushion from a neighbour,  it's just memory foam cut to size with an old pillow case on, 

For your itching I apply sudacrem works on a baby's rash , its helping me, 

1. I now know what it feels like on a baby having a nappy rash lol