Are thousands of women having needless hysterectomies?

After doctors told her she had advanced ovarian cancer and needed an urgent hysterectomy, Tracey Murray’s life spiralled into chaos. ‘My consultant said the cancer was extensive. I discovered that without surgery I could die within a year,’ she recalls. ‘The shock, of course, was profound. I was told I’d need six months of chemotherapy following the operation and that after that, my chances of living for five years were 50 per cent. I was devastated.’

Consider, then, the mix of emotions that ensued when, three weeks after Tracey, a 41-year-old divorcee, had her womb, both ovaries and cervix removed, she was told that she did not, after all, have any form of cancer. In fact she had endometriosis, a common condition in which pieces of her womb lining had embedded in an ovary. And it could have been treated by cutting away the affected cells or destroying them by laser; indeed, it might have needed no treatment at all. In either case, her hysterectomy had been unnecessary.

‘The surgeon told me: “It’s good news. You haven’t got cancer.” And I thought: “Gosh, I’m lucky,” recalls Tracey, a writer. ‘But by now I was feeling absolutely awful; far worse than I did before the operation, when I’d actually been feeling very healthy.’ And in the following months it only got worse. ‘I now feel as though my sexuality has been destroyed. My libido and sex life have been obliterated. I can’t have children now – although I’d hoped to one day – but I think I can learn to live with that. It is the fact that I can never retrieve my sexuality that is devastating.’

For Tracey, this common operation – 60,000 to 70,000 are performed in Britain each year – had not proved to be a godsend, but a curse. And her case is far from isolated. While experts have warned that the operation is absolutely necessary for cancer, critics claim the invasive procedure has become over-used. It’s increasingly seen as a bit of a ‘one-size-fits-all’ procedure for ‘female’ problems – that is at best unnecessary and at worst painful, leaving long-term emotional scarring.

Rick Schweikert, programme director of the HERS Foundation, a non-profit organisation in the U.S. which educates women about hysterectomy, says he’d like to see it go the way of tonsillectomy and effectively be phased out. Dr Woodruff Walker, a consultant diagnostic and interventional radiologist and lead clinician in gynaecological cancer at the Royal Surrey Hospital, concedes that many hysterectomies are performed needlessly.

‘I don’t think anyone seriously doubts that this is the case,’ he says. ‘And aside from the psychological and health implications of having a hysterectomy, there are potential cosmetic impacts: the incision can leave quite a disfiguring scar. ‘Many women report that the operation interferes with their sex life. Other possible risks include problems with the abdominal wall. In 4 to 6 per cent of cases, serious complications that require further major surgery occur.’

For most women, however, the real concern seems to be about losing their sense of femininity, their libido, and the ability to experience sexual pleasure. When HERS surveyed 691 women who’d had their womb and both ovaries removed in a hysterectomy, its findings were disturbing. Nearly 80 per cent struggled with poor libido, 70 per cent were less happy with their sex life, 80 per cent reported profound fatigue and more than half suffered weight gain.

Solicitor Bridgette York, who campaigns for alternative treatments to hysterectomy, believes women’s reluctance to discuss their sex lives has allowed doctors to continue to perform needless operations. Women, she says, are routinely told surgery is the only option; its consequences are not clearly explained and there is a general feeling of lack of informed consent.

There are three different types of hysterectomy performed in the UK: removing the womb; removing the womb and cervix; and removing the womb, Fallopian tubes and ovaries (bringing on an early menopause).

Bridgette resisted medical advice to have a hysterectomy to remove a large fibroid – a benign growth in the womb. She was 25 when it developed and it was nine years before she discovered a doctor who’d perform an alternative to hysterectomy. She trusted her own judgment: ‘ Doctors didn’t reassure me it wasn’t cancerous, but I found out that 95.7 per cent of fibroids are not.’

Aware of the consequences of the operation, she says: ‘I wanted to preserve my womb and my fertility. I didn’t want an early menopause and I knew the operation might affect my sexuality and how I felt about myself as a woman, so I researched alternative treatment.’

Eventually Bridgette had the 11lb fibroid – larger than the average full-term baby – successfully removed in pieces by myomectomy, a keyhole procedure that does not mean loss of the womb.

‘I went from size 16 to size 10 in two months. I felt brilliant, got my figure back and felt much more confident sexually,’ says Bridgette, who is single and lives in London.

She set up the Fibroid Network Patient Support Group, which campaigns for GPs to supply patients with information on alternative procedures to hysterectomy. ‘Many women are having hysterectomies not because it’s clinically necessary – most are done on non-cancerous conditions – but because it’s an easier option for doctors,’ she says.

The surgery is used to treat fibroids, heavy menstrual bleeding, endometriosis (when womb-like tissue grows outside the womb, causing pain) and cancer of the uterus and cervix.

Gynaecologists argue hysterectomy is still the best, simplest and safest answer for women who suffer such painful and heavy periods – sometimes for three weeks every month – that life becomes intolerable for them.

These women are typically aged between 30 and 50, have completed their families and are happy to lose their reproductive organs. The procedure is also a vital treatment for ovarian, womb and cervical cancer. It is also used to treat pelvic pain.

Patricia Upton is a woman for whom a hysterectomy has been a positive experience. For years, daily pelvic pain was a constant presence. Although she had passed the menopause, there seemed to be no let-up.

Giving up work as a postwoman at 56, three years ago, made her symptoms worse. ‘You just get used to it,’ she admits. ‘I would be in awful discomfort some days, but always carried on.’

But in 2008, relief came almost by accident for mother-of-two Patricia, who lives in Tamworth with her husband Gordon, 61, a retired policeman. A sympathetic nurse took a cervical smear test and in the process realised that Patricia’s womb was in an unnatural position – and that just having the test left her laid up in agony for a day. ‘You can’t go on like this,’ she said.

Patria was referred to consultant gynaecologist Chris Mann, of BMI the Edgbaston Hospital, who performed an exploratory laparoscopy (where a camera is inserted into the abdomen) before concluding that Patricia had endometriosis so severe that it had twisted her womb. ‘ “This is not going to get better and I think it will become more painful,” he warned. He recommended a hysterectomy. I was terrified,’ she says. ‘I remembered my mum having one and how painful it was, and how long it had taken for her to recover.

“Do I have to go through all that?” I thought. She agreed to the procedure, but even as she went down to theatre, she wasn’t sure she had made the right decision. However, her operation was a complete success and she sailed through the recovery. ‘I was out of bed next day, home the day after and I’ve had no pain whatsoever. It has made no difference to my feelings as a woman. And I’d particularly recommend the keyhole procedure – where they operate through a tiny incision – to anyone. It’s improved the quality of my life.’

Mr Mann says: ‘No surgeon performs these procedures without thought. We always explore other avenues first, such as medical options (from painkillers to hormone therapy, the Mirena progesterone coil and other drugs which can reduce blood flow), to surgical propositions.

‘These may include traditional abdominal hysterectomies – but these days also include keyhole procedures and techniques such as endometrial ablation, where lasers are used to remove tissue.’

Dr Woodruff Walker has pioneered the process of fibroid embolisation in Britain and has carried out more than 2,000 procedures, which are minimally invasive and take roughly an hour. In the operation, the doctor cuts off the blood supply to the fibroids, which wither and die. After two weeks, a woman can return to work.

But, warns Mr Mann, in some cases full abdominal surgery is the only option – if cancer is present, or the womb is enlarged due to a large cyst or fibroid – and it is dangerous to suggest otherwise. Women must not be frightened off the operation. ‘This is a very safe operation which has good results for most women. The success rate for heavy bleeding is 100 per cent. And patients like that. It guarantees that the painful, heavy flooding will stop.

‘Plus the new ways of working – such as keyhole procedures – mean many women can be back at home after a day and back at work after one week. The 37days when women were laid up for six months are long gone.’

Nor is he convinced by arguments that it diminishes sexual pleasure. ‘That is absolute nonsense. There is no strong evidence to suggest that patients cannot have orgasms.’

He says that occasionally libido is affected by the removal of ovaries as they are responsible for the production of testosterone, which drives that feeling. ‘We can replace that by using a hormone supplement – no one has to suffer.’

But what of the argument that the operations are carried out through habit and even for financial gain?

Bridgette says: ‘There is no doubt that some doctors feel threatened by relatively new treatments because they’ve earned a good living from hysterectomies.’ Nonsense, says Mr Mann. ‘The vast majority are carried out on the NHS; there is no monetary incentive to the surgeon.’

He adds: ‘Doctors have a high degree of clinical integrity on the whole. I don’t know anyone who would suggest an operation for any reason other than need.’

The debate itself may not be helpful to women who are currently plagued by constant pain and bleeding, and perhaps contemplating a hysterectomy – many will feel more confused, not less.

To these, says Bridgette: ‘If a doctor says you need a hysterectomy, always get a second opinion. It may simply be that your doctor doesn’t feel competent to carry out an alternative procedure.’

Mr Mann adds that you should go through all the options with your doctor before embarking on surgery and adds that if you are hoping to have the operation performed via keyhole methods, make sure you find a surgeon who is experienced at the technique and has carried out many of them regularly.

But he emphasises: ‘This operation is highly successful; it is routine, and most women recover well.’

But for Tracey Murray this advice comes too late. ‘I did not want a hysterectomy, but I trusted the medical profession,’ she says. ‘I now realise my consultant could have taken a biopsy before performing the hysterectomy, which would have proved I had endometriosis, not cancer, and therefore did not need the operation.

‘He failed to do so, and my life has been devastated. Physically, I feel wretched. My abdomen is so swollen I look pregnant. I have chronic back pain and sciatica-like pain down one leg and I feel constantly exhausted. I’ve gone grey and developed excess facial hair. I’ve aged dramatically.’

As a result of her emotional and physical ill-health, she cannot work. ‘I feel as if my body has been pillaged, and the shock of suddenly losing all the hormones that affect my emotional and cognitive faculties has plunged me into severe depression,’ she says. ‘Had I known what the consequences of having surgery would be, I would have refused it – even if I’d had cancer.’

More information at www.thegynaeclinic.co.uk

THE LESS DRASTIC ALTERNATIVES

Medication: For fibroids, the alternative is Gonadotropin-releasing hormones (such as Zoladex and Synarel). For heavy bleeding, anti-inflammatories or anti-fibrinolytic agents (which encourage the clotting process). Cons: Drugs for fibroids can be used only temporarily. On stopping treatment, fibroids grow back quickly.

Mirena Coil: The coil — a tiny T-shaped piece of soft flexible plastic — is inserted into the uterus, where it stays for up to five years. It emits a low dose of the hormone progesterone which prevents the womb lining from becoming thick, so periods become lighter or even stop. Cons: Coil may be expelled without the woman noticing. Can lead to cysts, swelling, weight gain, infections and decreased libido.

Myomectomy: Surgical removal of fibroids only, under general anaesthetic. Cons: Fibroids may grow back. May affect fertility. Embolisation: A new alternative for fibroids carried out by a radiologist under local anaesthesia. Under X-ray, a tiny tube is introduced into the two arteries supplying the uterus; harmless particles of Poly Vinyl Alcohol are injected into the artery silting up the blood vessels that supply the fibroids, causing them to shrink and die. Cons: Most serious complication is infection, which if severe may eventually lead to a hysterectomy.

Endometrial Ablation: Used for heavy bleeding, bleeding between periods or after the menopause. Surgeons destroy the lining of the womb using either an electrically heated metal ball (diathermy), lasers, microwaves or a special thin-walled, plastic balloon filled with warm water and heated. Cons: Can include infection and damage to womb, vagina or cervix. May need to be repeated. Can affect fertility.

About the Author

Victoria Lambert has been a journalist for more than 20 years, and specialises in health and medical matters. She writes for the Telegraph, the Times, the Sunday Times, the Guardian, the Mail and the Mail on Sunday. She contributes to Saga, Geographical and First Eleven magazines – where she is the agony aunt.

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