Thousands of women with bladder cancer are having life-changing surgery without realising it will end their sex lives, a Mail on Sunday investigation has found.
The operation, which involves removing the bladder and part of the vagina to ensure that cancer is eradicated, leaves most women unable to have sex again.
Even for those who can, sexual pleasure may be impossible because the procedure often causes permanent nerve damage.
The Mail on Sunday has learned that scores of women, some as young as 40, who undergo the operation are in the dark about the results. Patients say their doctors severely under-played the effects, using vague explanations such as ‘things not quite being the same down there’, ‘your sex life might not be the same’ and ‘bits and pieces might be missing’.
Bladder cancer mainly affects the over-65s, and surgeons, speaking to this newspaper, said that ‘at that age, sex isn’t such a priority’.
Yet one 57-year-old described her shock when, months after the procedure, she attempted to insert a pessary, only to discover she had essentially been left with no vagina. Another told of ‘excruciating agony’ when she tried to have sex for the first time after surgery.
Now, experts are calling for doctors to give official guidance to patients, with detailed explanations of the procedure’s consequences.
The consultants, from Guy’s and St Thomas’ NHS Foundation Trust in London, have launched a campaign urging doctors to speak candidly about the effects on women’s sex lives – something they say rarely happens due to bladder cancer being seen as a male disease.
The Mail on Sunday has learned that scores of women who undergo the operation are in the dark about the results. Patients say their doctors severely under-played the effects (stock)
Led by urologist Raj Nair, the initiative involves a document compiled by women’s health experts, including physiotherapists and gynaecologists, that gives a comprehensive explanation to patients.
Professor Mieke Van Hemelrijck, a cancer researcher, says: ‘We want medical teams to have clear discussions with patients. Currently, sexual consequences of bladder cancer treatment are not addressed, because it’s not an easy conversation.’
More than 10,000 Britons are diagnosed with bladder cancer every year. About a third of cases are the most aggressive type, often requiring chemotherapy followed by extensive surgery to destroy all cancer cells, known as a cystectomy. In men – who are twice as likely as women to suffer the disease – this usually involves the removal of the prostate, leaving more than half suffering from erectile dysfunction.
Medication and other treatments can often remedy the problem to some extent, but women rarely have these options. Their surgery involves the removal of the bladder, as well as the cervix – the opening of the womb – and the front, or anterior, vaginal wall, where the cancer typically first spreads. Sometimes doctors must remove the uterus, ovaries and Fallopian tubes, too, resulting in infertility.
Only a handful of specialist hospitals offer vaginal reconstruction, and it is rarely provided on the NHS. Experts also argue that far more women than necessary are undergoing the procedure because they are diagnosed at a late stage.
More than 10,000 Britons are diagnosed with bladder cancer every year. About a third of cases are the most aggressive type, often requiring chemotherapy followed by extensive surgery to destroy all cancer cells, known as a cystectomy (stock image of bladder anatomy)
Symptoms of bladder cancer, including blood in the urine and pelvic pain, are often mistaken for urinary tract infections, which are common in women.
A 2013 study published in the British Medical Journal found nearly a third of female bladder cancer patients visited the GP at least three times before being referred to a cancer expert, compared with one in ten men. As a result, one woman in three with the disease is diagnosed at a late stage, requiring the most intensive treatment, compared with just over a fifth of men, according to NHS figures.
Speaking to The Mail on Sunday, NHS urologists reported seeing at least one case of delayed diagnosis every month – usually a woman in her 40s or 50s. Professor John Kelly, consultant urological surgeon at University College London Hospital, says that at late stages the cancer has often spread to the vaginal wall, as well as to the glands in the pelvis. He explains: ‘Sometimes the upper portion of the vagina, along with the urethra and lymph nodes, must be removed to clear the cancer. This means the vagina becomes smaller and narrowed so patients cannot have intercourse.
‘We try to preserve as much as possible, but getting cancer clearance is life-saving. Women need to be warned about how their sex life will be affected because, depending on how much their disease has spread, they may choose to have radiotherapy instead.’
Tim Dudderidge, consultant urologist at Southampton University NHS Trust, adds: ‘Women who have this operation are often left with practically no vagina. It is wrong that this can happen without discussion.’
Some experts say the effect on sexual function is overshadowed by another life-changing repercussion of bladder removal: the need for a urinary stoma bag, to clear urine from the body in the absence of a bladder. Prof Kelly says: ‘Sexual function may also be low on the priority list, so perhaps patients don’t fully take in the information.’
Urologist and cancer specialist Jo Cresswell, of The British Association of Urological Surgeons, says the information relayed to patients before surgery is the same whether the doctor is a man or a woman. The body provides patients and surgeons with an official leaflet containing in-depth details of the consequences of the procedure, including loss of sexual function.
But patients speaking to this newspaper said the leaflet was ‘too simplistic’. Shirley Norris, 57, from Lancashire, a manager at outsourcing firm Capita, recalled her ‘devastating shock’ when she tried to insert a pessary treatment for thrush, a year after the operation to remove her bladder, urethra, cervix and small bowel in 2017.
Shirley had suffered symptoms – blood in her urine – for 18 months and was treated for a urinary tract infection before being diagnosed with advanced bladder cancer. She says: ‘I knew I had only two options: have the surgery, or don’t have the surgery and die. I knew if they didn’t get rid of the cancer, I wouldn’t survive.
‘Mention of the removal of the ‘anterior wall of the vagina’ was tacked on to the end of a long speech about why the operation was vital. There was some talk of my urinary stoma, but nothing more about how it might affect being intimate with my husband.
‘A physiotherapist spoke to me about exercises to help me recover after surgery, and when I said something about sex, she put her hand up and said, ‘I don’t know if you have sex – and I don’t want to know.’ It made me feel like a child, as if I should be grateful that they were keeping me alive.’
About eight months after the operation, Shirley and her husband Mike, 58, a water engineer, attempted to reignite their previously healthy sex life, but she was left in agonising pain.
She says: ‘I was too embarrassed to tell anyone at first, but when I suffered a bout of thrush and tried to insert a pessary, I couldn’t. It felt like something was blocking it and, panicking that it was another tumour, I went to my GP. She examined me, then told me my vagina was removed during the surgery. I hadn’t understood at the time because it really wasn’t explained to me.’
Mother-of-two Shirley, who has been in remission for three years, adds: ‘Having sex is not possible now. I have a vagina just over an inch in depth.
‘I tweeted about it and was overwhelmed with messages from other women with the same problem. The misery and shock that follows, on top of having cancer, is very hard to bear.’
A swathe of accounts shared on Facebook groups for bladder cancer patients tell of similar stories. Anita Brown, 49, from Hampshire, was told simply to expect ‘sex to be a bit difficult and not the same as it was before’, ahead of the operation to remove her bladder and a portion of her vagina in 2016.
A year after her operation, Anita, a former carer, and husband Tim, a 49-year-old engineer, tried to have sex, resulting in ‘absolute agony – like a scraping inside me’.
She says: ‘I researched online and have now met at least 20 other women who, like me, weren’t informed properly about the consequences.’
Faster diagnosis, using new, high-tech screening tools, is one solution to this problem, according to Mr Dudderidge. Now, he and his colleagues at Newcastle University, along with medical innovation company Arquer Diagnostics, are trialling a simple test to spot early signs of bladder cancer in the urine.
The technology, temporarily being offered to UK NHS hospital patients by the firm in order to clear a backlog due to the impact of Covid, looks for a protein called MCM5 that is released when cancer cells replicate.
Clinical trials involving more than 3,000 patients have shown the tests to be almost 100 per cent accurate at correctly identifying tumours. The test, called Adxbladder, can deliver results within two days, allowing for speedier referrals.
Mr Stuart McCracken, clinical lecturer and honorary consultant urologist at, Newcastle University, who has developed the test alongside Mr Dudderidge, says: ‘Women are going to and fro with a suspected urine infection. But with this test available, they can be diagnosed and treated much more quickly.’
Sadly, the test is too late for Shirley. She is awaiting support from a sexual physiotherapist, who will teach her to use medical dilators to expand the vaginal canal.
As for what she wishes she had been told before her procedure, she says a single sentence would have made all the difference. ‘No one knows what ‘anterior wall’ means,’ she says. ‘Just say that part of you will be shorter, or narrower, and we don’t know the full extent of the change until surgery is over. It’s simple, clear – and I’d have been prepared.’