'Doctors dismissed my itch as menopause - the real diagnosis was far worse'

A mum whose "itching downstairs" was dismissed as the menopause was eventually diagnosed with an ultra rare terminal cancer.

Jo Shaw Pyke, 48, had persistent itching and eventually pain around her genitals but these symptoms were dismissed as the menopause for around 18 months. Then, Jo was horrified when she found an 8cm tumour on her vulva and was diagnosed with vulvar mucosal melanoma cancer.

Despite being a cancer counsellor, the mother hadn't even heard of the terminal condition. Since her diagnosis in December last year, Jo, who is from South Shields, Tyne and Wear, has started a course of immunotherapy to try and keep her cancer at bay - but this has a very low success rate. Jo, who has been a counsellor with Cancer Connections for more than one decade, said: "I've not worked with many vulvar cancers.

"Certainly in 13 years I've never worked with anyone with mucosal melanoma. I'd never even heard of the word. I've seen thousands of clients and I've been to more funerals than you've had hot dinners. I've come across lots of different forms of cancer but hadn't heard of it myself. It was like sh**, what am I dealing with here?"

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A GoFundMe page has been set up by her friend Karen Murray to raise money to enable the cancer patient to undergo potentially life-saving TIL therapy treatment abroad as it is not readily available in the UK. The rare disease develops in the mucous membranes, such as those lining the mouth, nose, throat, anus or genital areas and only affects around 1% of melanoma cases, according to Melanoma Research Alliance.

Jo has a history of cervical cancer and had a hysterectomy in 2020 but after complaining of painful itching in 2022, doctors dismissed her symptoms as being side effects of the menopause.

"I was getting this itching and sometimes severe pain. It felt like I was weeing razor blades. I kept going back and forward to my GP but it was still in the midst of covid and everyone was being told to 'stay in your house, don't go to the doctor'," the mum, who had only got married weeks before her diagnosis, continued.

"I kept sending e-consults to the doctors. But they kept saying 'it's the menopause. It's all the menopause'. I think I had six courses of antibiotics prescribed and within a few days the GP secretary would ring and tell me to stop taking them because I didn't have a water infection.

"There was never any follow up except me just putting an e-consult in saying 'I've got this pain when I'm urinating again and I've got this and I'm run down and I'm tired'. The last e-consult I did was at the beginning of December last year because I said to my husband 'enough is enough'.

"My husband and I got married in September. You're meant to be in the honeymoon period but I wasn't swinging from any chandeliers. With everything that was going on down below, the itching and soreness, it was affecting everything.

"I said 'enough is enough, they're going to have to refer me to a gynaecologist'. The night before that appointment I got out of the bath and I dabbed myself with a towel down below. A bolt of electricity went through me.

"I don't know what possessed me but I went into the bedroom and got a mirror and got the shock of my life. I ran down to my husband, legs wide open and said 'what the F is that on my vulva'? My husband said 'don't worry you're at the doctors tomorrow'. I don't think he slept and I certainly didn't."

After being referred to a gynaecologist, the mum discovered she had an eight centimetre tumour in her vulva and was diagnosed with vulvar mucosal melanoma which had also spread to the lymph nodes. The tumour on her vulva was removed during surgery in January 2024.

Jo said: "As soon as the gynaecologist looked he said 'I'm telling you now, it's definitely vulva cancer'. Doctors took an 8cm radius of the tumour. You could see at least half of it was black. The other half was all disfigured.

"I was stitched from top to bottom and all the stitches at the bottom came open and you can't restitch it. It got infected twice. I just sat with my legs open for nearly three and a half months.I had to eat everything lying down and I couldn't sit down."

A biopsy revealed Jo's cancer had sadly returned in June 2024. The volunteer revealed she has a wild-type BRAF gene so the only available treatment to her is immunotherapy, which she started in September 2024, but the success rate is extremely low and subject to whether she's able to withstand its side effects.

Jo said: "With mucosal melanoma there aren't really any significant side effects. There's no symptoms. Some people are still doing coast to coast and running marathon.

"I'm on stage four palliative now. They've only offered me this drug in the UK for two years if I can sustain it. If I can't, that's it. That's my number up here as far as the UK's concerned. That part I can't compute. I feel physically great.

"I'm not in bed sick like a dying person because my body's not telling me I'm dying. My attitude from the beginning has been none of us know. We're all ticking time bombs and we're all going to die and there's no guarantee when that is. I've always lived my life with appreciation.

"I just had to go straight into using the counselling tools for everyone else and putting it into perspective for them. I might outlive all of you. None of us know. What's important is we live everyday and we appreciate it."

The 48-year-old woman has set up her own support group for people living with incurable diseases which meets up every fortnight.

Jo is hoping Karen's fundraiser will enable her to undergo vital TIL therapy treatment and aims to spread vital awareness about mucosal melanoma while encouraging people to get their bodies checked.

Jo said: "It would mean the world to me if I am fortunate enough to get the chance at TIL therapy, as I'm confident it will save my life.

"If I am blessed enough to battle this disease and survive, my focus will be to resume counselling Cancer patients, continue my support group for cancer patients living with an incurable cancer and, also be an advocate for anyone who's starting on their journey with mucosal melanoma.

"As soon as I got diagnosed I took to my Facebook. If it saves one person just checking their body or just looking. I got so many calls from female friends that said 'I have itchiness as well'. I just said 'go and get it checked out'.

"Luckily everyone came back all okay but it's that great that people are being more vigilant with their bodies and checking. That's not just for girls but for guys as well. If I can help point just one person in the right direction then it's all worthwhile what's happening with me." You can donate to Jo's GoFundMe here.