Unnecessary hysterectomies: Time for women to take a stand

Eighteen months ago, I became one of the millions of women who had to undergo a hysterectomy. Despite having had no symptoms, a huge ovarian growth was found during a routine gynaecological check-up and a radical hysterectomy was performed two weeks later.

On the day I left hospital, I had questioned the surgeon about the effect of the drop of hormone levels after the removal of my ovaries. He casually (or so it seemed to me) remarked about a possible loss of libido. 

I immediately saw red. 

“You would never say that so casually to a man,” I said angrily. “If this was a male issue, the medical world would find a solution.... oh wait, but you have. A little blue pill!” 

To be fair, the surgeon did offer some solutions, but this was only the preamble to what was to become a personal and political fury over the months following the operation.

During my visits to three surgeons prior to the operation, all had remarked on the difficulties in diagnosing ovarian cancer. At that stage, I already knew that the CA-125 blood test for tumour markers was very unreliable for an initial diagnosis. (It is more useful in the detection of a return of ovarian cancer following treatment). 

The other diagnostic tools available are ultrasounds, CT and MRI scans. Ultrasounds are unclear and usually only signal a growth or thickness, while CT and MRI scans will reveal whether it is a fluid filled mass (more indicative of a cyst – and thus less problematic) or a hard mass (and thus more concerning). 

All the specialists I had consulted had explained that the only way to definitively know whether a hard mass is malignant is surgery. If there is any suspicion that it might be cancerous, they will usually opt for abdominal or open surgery (as opposed to laparoscopic or vaginal procedure) in order to prevent any potential cancer cells “chipping off” during the operation and “seeding” amongst your remaining organs. 

In most cases they also have to send the growth away for a thorough laboratory analysis – so can’t just make a call on the nature of the tumour in theatre. 

If there is any suspicion of a possible malignancy, as a matter of caution they tend to favour a pre-emptive hysterectomy in order to avoid another surgery shortly after. 

So, when an ovarian mass is found, women are usually left with the choice between a radical hysterectomy or possible death. Which of course is not really a choice. 

During my recovery, I often had vivid images of women all over the world with deep red scars on their abdomens, struggling to heal emotionally and physically from hysterectomies. 

I could not stop wondering how it was possible that in this age, when we can transplant hearts, do the most sophisticated brain operations, and even perform surgical procedures on babies before birth, we have no way of figuring out if a woman has ovarian cancer other than cutting her open and ripping out all her reproductive organs? 

How archaic and brutal!! 

A doctor later told me that hysterectomies were the only routine (as opposed to trauma related) open abdominal surgeries still done today. 

Despite the frequency of the procedure, it is a huge invasion into women’s bodies and can be hugely traumatic. The shocking thing is that many of the hundreds of thousands of hysterectomies are performed unnecessarily.

In the USA, for example, it is the second most common surgery for women.

About 600,000 are performed every year, and only 10% of them for cancer diagnoses. Studies revealed that 70% of hysterectomies in the USA did not meet an expert physician panel's criteria for hysterectomy, and 76% did not meet criteria established by the American College of Obstetricians and Gynaecologists (ACOG). There are similar studies in the UK. 

I was one of the 10% that required a cancer diagnosis and my procedure was not done lightly. Still, if there had been better tools available to diagnose ovarian cancer, they could have removed only the one ovary – a much simpler and less invasive procedure with fewer long-term consequences. 

So why aren’t there better diagnostic tools?

Unsurprisingly, the answer lies in the discrepancy in research funding. In the United Kingdom, only 2.5% of publicly funded research is dedicated to female reproductive health, despite the fact that one out of three women will suffer reproductive health problems. 

According to the American Cancer Association, ovarian cancer ranks fifth in cancer deaths among women, accounting for more deaths than any other cancer of the female reproductive system. 

Yet, between 2013 and 2018, the National Cancer Institute allocated only $611 million for ovarian cancer research, compared to almost $1.5 billion (2 1⁄2 times as much) for prostate cancer research. The numbers for cervical and uterine cancer were even less than ovarian cancer. Numbers were similar in Canada and the UK. 

Elisabeth Baugh, CEO of Ovarian Cancer Canada, pointed out that ovarian cancer is the most fatal gynaecological cancer in Canada. Yet, almost three times more money is spent on research into prostate cancer than ovarian cancer there – even though the five-year survival rate for prostate cancer is between 90% and 100% compared to less than 50% in ovarian cancer). She also pointed out that ovarian cancer survival rates hadn’t improved in 50 years because of a significant underfunding of research in this area. 

Just as an aside:  it also turns out that there is five times more funded research into erectile dysfunction (which affects 19% of men) than into premenstrual syndrome, which affects 90% of women. 

This is totally unacceptable. 

I have no doubt that in 100 years from now, people will look back in horror at the brutality of hysterectomies. Until then, millions of women will suffer unnecessarily, unless women take a stand and demand to be taken seriously by those involved in allocated funding to -  as well as doing - medical research.