Bitter regrets: Sandra Simpkins
By LUCY ELKINS
06 March 2007
When her womb was removed, Sandra Simpkins felt as if she had been castrated. Mrs Simpkins, who underwent a hysterectomy at the age of 53, says: "I felt as if I was a second-class citizen. For 18 months after the operation, I had strong suicidal feelings. I still regret ever having had it done. I felt I was no longer a woman.
"As well as feeling a deep sense of loss, I also felt violated and angry. A doctor would do anything to prevent a man having his testicles removed, yet when I tried to argue I was made to feel like a hysterical woman who was fussing As well as the physical effects, she may also suffer from about nothing. Yet I had, effectively, been made into a female eunuch."
Sandra's is hardly an isolated experience. The average British woman is twice as likely to have her womb removed as her tonsils. In the UK, almost 40,000 women undergo the operation each year ? and yesterday the Duchess of Cornwall became one of them.
Bitter regrets: Sandra Simpkins
But while a tonsillectomy causes no sideeffects, a hysterectomy leaves a woman unable to have children and can mean an early effects, she may also suffer from reduced sexual desire and depression.
Sandra, who founded the charity Campaign Against Hysterectomy, says she receives many calls from women who are 'highly distressed' about being pushed into having an operation they did not want and which has left them feeling traumatised.
As Dr Susan Marchant-Haycox, a health psychologist from Birbeck College, London, who has studied the effects gynaecological surgery has on women, explains: "For women, the womb has great symbolism, and having it removed can be deeply traumatic. Often women come to see their womb as a sign of femininity, and once it has gone some may actually grieve its loss. They do not feel as feminine or sexual as once they did, and feel it is a sign of ageing.
"A woman who has not had children and undergoes a hysterectomy may also feel anger because she feels robbed of her natural right to have children ? especially if she has not yet gone through the menopause.
"For some women it can be a relief, but it is not unusual for a hysterectomy to cause trauma. It is such an emotional subject that I know of women who have refused to have a hysterectomy even though not having the operation leaves them seriously ill."
Hysterectomies are given for a variety of reasons: to help reduce the discomfort of heavy periods, to treat endometriosis (when small pieces of the womb lining build up in the pelvis), or a prolapsed womb (where it drops from its usual position). Less commonly, a hysterectomy may be performed when there is cancer in the womb, cervix or ovaries. For many years there has been disquiet about the number of these operations taking place. In the mid-1990s, as many as 60 per cent of women who complained about heavy menstrual bleeding were given a hysterectomy ? even though many of them were of child-bearing age.
The Government's Chief Medical Officer, Sir Liam Donaldson, warned last year that too many hysterectomies were still being carried out when there are other proven, less invasive forms of treatment that allow women to keep their wombs. LAST month, the National Institute for Clinical Excellence (NICE) issued guidelines stating that for heavy menstrual bleeding a hysterectomy should be offered only as a last resort.
The Royal College of Obstetricians and Gynaecologists said the advice was 'most welcome'. But Mrs Simpkins, who helped campaign for these guidelines, says they do not go far enough.
"We wanted safeguards for women undergoing hysterectomies for all reasons ? not just heavy periods. From the calls I get, it is clear that women are still having these operations unnecessarily."
Mandie Broadhurst was one such woman. The 43-year-old human resources manager from Sheffield, who has no children, was advised to have a fibroid ? a benign lump the size of a small melon that had formed in her abdomen ? removed last year, even though she had lived with it without any problems for years.
Before agreeing to the operation, Mandie was told there was a three per cent chance that she would need to have a hysterectomy. To her horror, she came round from the anaesthetic to find her womb had been removed ? and with it her chance to have children.
"When the surgeon told me she had taken my womb out, I could barely believe it I was so horrified and shocked," says Mandie. "I'd left it quite late to have children but I was still hopeful that it might happen. Knowing that I would never have a baby left me feeling devastated. I cried for hours.
"I had had an MRI scan before my operation and the surgeon had assured me it would be no problem to just cut the fibroid out. She knew I wanted to have a child because I had asked if I would get pregnant with the fibroid still in place. She told me I could, but that it might feel like I was carrying twins as the fibroid was about 8cm in diameter.
"Before the operation, I still wasn't entirely sure I should have it removed. Had the surgeon said that there was even a seven to 10 per cent risk of having a hysterectomy, then I would not have agreed because I wanted a child so much.
"Since the operation, I have been so much more aware of babies and children. Friends don't tell me they are pregnant because they know it will upset me. They've stopped asking me to baby-sit, too. I even miss having periods. I just feel less womanly. I regret it wholeheartedly."
In his report, Sir Liam Donaldson noted that for many women there are alternative ways to treat their problems other than removing their womb ? but, shockingly, some doctors are not aware of them or are unwilling to alter tried and tested techniques.
Heavy bleeding can be cured by destroying the lining of the womb ? an operation that takes minutes ? or be eased with medication. There are a number of alternative treatments for fibroids, including drugs.
"These days it should be extremely rare for a woman with heavy periods to have her womb taken out as there are so many other options which did not exist a few years ago," says Peter Bowen-Simpkins, a consultant gynaecologist at the London Women's Clinic and a spokesman for the Royal College of Obstetricians and Gynaecologists.
"As a college, all we can do is lay down guidelines. We tell our members to view hysterectomy as a last option. What we cannot do is to force them to follow this advice.
"However, I have no doubt that there are pockets of practitioners around who still think that hysterectomy is always the easiest option."
The figures bear our Mr Bowen- Simpkins' concerns. In the past seven years, hysterectomies have fallen by as much as 64 per cent in some parts of London, yet in Tyne and Wear they have declined by just 15 per cent.
Overall, though, the figures are much improved. In 1994 there were 75,000 hysterectomies carried out each year. In 1998, there were 55,000 and now there are fewer than 40,000. Yet this still includes around 8,000 procedures to cure heavy periods ? a condition that can be treated very simply with far less invasive methods.
There are three different types of hysterectomy performed in the UK: removing the womb, removing the womb and the cervix, or removing the womb, Fallopian tubes and ovaries (thus bringing on an early menopause if the woman has not already been through it).
Sandra Simpkins, now 65, claims she was bullied into having the latter operation and knows of others who have been through the same. She subsequently discovered her operation had been unnecessary.
"I was told after a scan that I had ovarian cancer. I did not believe that a grainy picture could prove I had cancer, so resisted my doctor's advice to have a hysterectomy.
"However, the doctor called and told me I would be struck off his list if I didn't ? which would leave me without a GP. As I went into hospital, I knew deep down that it was the wrong thing to do, but I felt ill and rundown.
"I now know that this was for a different reason ? in fact, I had a thyroid problem ? but the doctors kept telling me I would feel much better if I had a hysterectomy.
"Under duress, I eventually agreed to the operation, but afterwards I felt awful. It plunged me into such bad depression that for 18 months I felt suicidal. I was also in a lot of pain physically.
"A year later, I found out that I had not had cancer at all. I'd had a cyst on my ovary, which could have just been left or removed. I only found out because I made a complaint about my treatment and a lawyer acting on my behalf got access to my notes."
But even those who choose to have an hysterectomy agree that the operation can have a devastating psychological effect ? something doctors do next to nothing to prepare them for.
Karen Sand was 39 when she had her womb removed
Karen Sand was 39 when she had her womb removed to tackle painful endometriosis that had blighted her life for seven years.
Although she had two teenage children, the retired charity worker says she felt robbed of the chance ever to extend her family.
"I had my operation within weeks of the doctors suggesting it," she says. "I was told this was the best option for my condition. I had already tried monthly injections of hormones, which reduced the pain, but I was worried about the health risks of continuing with them.
"After the operation, I was sent home with a booklet telling me about the physical symptoms of hysterectomy, but nothing prepared me for how totally empty and depressed I felt.
"I am a well-balanced person but I struggled against major depression for about a year. I went back to see the gynaecologist and said: ' don't believe I'm the only woman to feel like this ? why did you not warn me I would feel this way?' He just shrugged.
"Eventually, I was referred to a counsellor who told me I was just grieving for my womb. Today, I can say hand on heart that I do not regret it ? but it took me a long time to get over it."
As well as the psychological effects, for women such as Sandra Simpkins, who've also had their ovaries removed, the operation brings on a premature menopause.
The onset will be far more abrupt and the initial symptoms ? such as hot flushes, sleeping problems and night sweats ? will often be more intense than they are during a natural menopause.
While there are many options available for women who might once have needed a hysterectomy, finding out about them is not easy.
Many women of the Duchess of Cornwall's age undergo a hysterectomy to treat a prolapsed womb. However, a study by the Benenden Hospital in Kent, which was published by the American Journal of Obstetrics and Gynaecology, studied the results of using an alternative method they found to be more successful.
"From our research, I would say that 90 per cent of hysterectomies on older women to treat prolapse are unnecessary," says Dr Mohamed Hefni, consultant gynaecologist at the Benenden, an independent private hospital in Kent.
"Women's wombs decrease in size as they get older, and women over 60 have such small wombs that it is possible to surgically strengthen the ligaments to help put it back into its normal place. This is cheaper than hysterectomy and less invasive.
"However, there seems to be a reluctance to take this method into the mainstream. The teaching hospitals in the UK have not yet adopted the technique and few people know that it exists. We see a lot of women who have been told the only option is hysterectomy."
Meanwhile, the cost to the NHS of these unnecessary hysterectomies is huge. Sir Liam Donaldson said that £15 million is wasted each year on them. A hysterectomy costs around £3,000, whereas a coil to prevent heavy menstrual bleeding costs just £100.
However, not all women are against the operation, according to Mr Bowen-Simpkins. 'It is true that the vast majority of women would do anything to avoid a hysterectomy ? but I have also known women who have suffered so badly with a painful condition, such as endometriosis, that their attitude is: 'Just take my womb away'.
"That is actually an upsetting situation for a surgeon. No one wants to operate on a healthy womb. I would urge any woman who is told to have a hysterectomy to ask what else might be available to help her first."
: A mirena implant is a device like the coil which is inserted into the womb and releases progesterone to reduce heavy bleeding. Minor surgical alternatives include microwave endometrial oblation, using microwaves to destroy the lining of the womb. This stops periods but lets a woman keep her womb. An alternative involves inflating a balloon full of liquid in the womb. This is then heated to 84c so that it burns off the first few millimetres of the womb lining. Tranexamic acid is a drug taken during a period to help reduce blood flow.
FIBROIDS: These can be surgically removed, or medication used to shrink them. Pellets inserted into the veins that feeds them starves the fibroids of their blood supply and so kills them off. Fibriods can also be destroyed with highresonance ultrasound beams.
ENDOMETRIOSIS: The 'rogue' womb lining that attaches itself to other parts of the pelvic area can be burned off with laser treatment.
PROLAPSED WOMB: There are a number of treatments depending on the severity of the condition. HRT can boost collagen levels, which strengthens the vaginal walls and helps keep the womb in place. A pessary or diaphragm-like device can be inserted into the vagina to prevent the womb dropping down. This needs to be replaced every three to six months. Surgical treatments include using a mesh to create a net support for the womb.