Common: About 80,000 LLETZ procedures are performed in the UK, each year
After a routine smear test revealed that, for the second time in my life, I had abnormal cervical cells — cells that are more likely to develop into cervical cancer — I was referred to a colposcopy clinic in Glasgow.
The first time, my doctors had advised ‘watching and waiting’, with no treatment, as sometimes such cells get better on their own.
But this time around, with the abnormal cells still there, I was advised to have a procedure called large loop excision of the transformation zone, or LLETZ.
The doctor said it was a minor treatment, involving burning off a ‘few’ cells to reduce my risk of cervical cancer.
About 80,000 LLETZ procedures are performed in the UK each year and it is the standard treatment for abnormal cells spotted after a routine smear test.
No one mentioned anything about potential side-effects, though I was given a leaflet telling me to wait four weeks before having sex to give the cervix time to heal. However, I waited longer after developing an infection following the procedure.
But that wasn’t the only problem: things afterwards just didn’t feel right — my stomach muscles were so weak it was hard to sit, and I lost all desire for sex.
After six weeks, I felt like I should try having sex and was shocked to discover not only was it painful, but at the age of 25, I’d lost the ability to orgasm — I could feel a muscle contract but without any associated pleasure.
Other symptoms included feeling exhausted and disassociated from my body. That was 13 years ago.
In the intervening years, I’ve tried to heal my body through alternative therapies, including yoga and meditation, which helped with the constant tension in my hips. I was also lucky my partner Tony, 52, was understanding.
Side-effect: LLETZ slightly increases a woman’s chance of having a late miscarriage or premature labour in subsequent pregnancies, possibly as it can weaken the cervix
In January last year I found a blog post by a UK-based woman called Asha who had similar symptoms to mine. Under her post there were dozens of comments from women who’d experienced the same thing.
The LLETZ procedure involves inserting an electrical wire loop into the cervix, the passage at the neck of the womb. This is heated and used like a scalpel to remove an area of cells typically 1-2cm in width and 5-8mm in depth. This is much more than ‘just a few’ cells.
Asha had been referred to several places in the UK in her search to find out what had caused her symptoms and ended up flying to California to meet Dr Irwin Goldstein, director of sexual medicine at Alvarado Hospital.
He is doing research into LLETZ after hearing several reports from his patients. He estimates that about 15 per cent of women have sexual problems after LLETZ as a result of nerve damage.
Dr David Goldmeier, leader of the Jane Wadsworth Sexual Function Clinic at St Mary’s Hospital in London, told me that women’s reports of sexual dysfunction are ‘indeed worrying’.
‘LLETZ goes deep in some patients,’ he says, ‘and it is possible that whatever surgical technique is used, these sexual side-effects might result.’
But, Dr Goldmeier adds, research is needed to show that the cause is in fact LLETZ. ‘This hypothesis needs to be tested by comparing LLETZ with other treatments. However, it is also important to remember that LLETZ is life-saving.’
A point emphasised by the director of cervical screening for the UK, Ruth Stubbs, who says the national cervical screening programme is estimated to prevent more than 2,500 premature deaths from cervical cancer each year.
‘We offer women a high quality screening programme to achieve our aim to reduce the number who develop invasive cervical cancer and the number who die from it,’ she says.
‘I now don’t have smear tests, as I now know abnormal cells are not cancer, and I can’t face the procedure again. I know this is controversial, but it’s a risk I’m willing to take,’ says Kate
However, as Glasgow GP Dr Margaret McCartney has pointed out in her book The Patient Paradox, deaths were already falling before the screening programme was introduced — possibly due to overall improvements in hygiene and nutrition, and a decline in sexually transmitted diseases.
It’s also worth pointing out that a 2014 study at Sahlgrenska University Hospital in Sweden found that women treated with LLETZ or similar procedures such as laser (to destroy the abnormal cells) and cone biopsy — where a cone-shaped area of tissue is surgically removed — are still seven times more likely to develop cervical cancer than the general population, suggesting this procedure is no quick fix for eradicating cancer risk.
‘If you’re trying to prevent a hysterectomy because of cancer by doing LLETZ, then that’s one thing,’ Dr Goldstein argues. ‘But a lot of women don’t have cervical cancer when they do the LLETZ, they have abnormal cells.
‘It seems like the risk-benefit ratio is very different for women who have cancer than women who just have abnormal cells. That needs to be looked at — I am really shocked at the ability of this procedure to negatively impact on people’s lives.’
One thing that is known about LLETZ and which the NHS acknowledges is that it slightly increases a woman’s chance of having a late miscarriage or premature labour in subsequent pregnancies, possibly as it can weaken the cervix.
Doctors need to be honest that the cervix is a sexual organ, and operating on it may hurt sexuality
The pregnancy charity Tommy’s suggests the risk may be higher if women have had repeated LLETZ treatments or a lot of tissue removed — more than 10mm. As a precaution, it advises telling your midwife if you have had a LLETZ or any other type of procedure to remove cells from the cervix.
Asha and I recently started a Facebook support group, Healing From LLETZ, and in a short time have already had more than 550 members who have had similar experiences.
We need doctors to be more open about what can happen with LLETZ — they seem to think this would frighten women away from it, but surely it means they can make an informed choice, which is their right.
‘Doctors need to be honest that the cervix is a sexual organ, and operating on it may hurt sexuality,’ says Dr Goldstein.
‘The patient has to be involved in the decision making.
‘It could be once we learn more, there are other ways to do a LLETZ, one that doesn’t hurt the nerves. But until people are honest and forthcoming about the sexuality of women and the relationship of the cervix to sexual functioning, we’re not going to advance.’
I now don’t have smear tests, as I now know abnormal cells are not cancer, and I can’t face the procedure again. I know this is controversial, but it’s a risk I’m willing to take.
It’s not just a matter of helping women to make a choice, but also about the help women need with rehabilitation if they do suffer nerve damage.
Asha was told by a top sexual health doctor in the UK that she had post-traumatic stress caused by the LLETZ, and that this was what had caused her sexual numbness.
When she was examined by Dr Goldstein in the U.S. he performed quantitative sensory testing — a way of assessing reactions to hot and cold temperatures — to ascertain if there was nerve damage to the area as well as physical examinations, which revealed numbness.
For women like Asha and me, it’s more than just an issue of lost sexual function. As Asha says: ‘It’s not just about sex, it’s about feeling good in your own skin. The excitement of attraction or being able to flirt, feeling “alive”.’