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Health

Exclusive: Women are experiencing sexual paralysis, pain and trauma after this common cervical procedure

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The LLETZ (LEEP) procedure is performed to remove abnormal cervical cells that could become cancerous if left untreated, but a group of women say sexism in medicine failed to prepare them for the sometimes traumatic side effects

Anna Freeman

06 Febrero 2018 16:44

On 2 August 2010, Asha*, a 33-year-old woman living in Hackney, east London, visited Homerton University Hospital for a ‘minor’ procedure to remove abnormal cells from her cervix. A routine smear test and colposcopy the previous month showed a cellular change that threatened cervical cancer if left untreated. She was scheduled for a loop excision of the transformation zone (LLETZ), or a LEEP as it is also commonly known, as a preventative measure. Although slightly apprehensive about the process at first, Asha was assured there was ’no risk at all’ involved with the LLETZ, and no side-effects should be considered. But in the following weeks after the procedure, she realised something was wrong; like a huge part of herself had been cut away, leaving behind a host of unanswered questions and a spiral of isolation and depression.

‘The second I had the procedure my whole life changed and my identity changed,’ Asha recalls, ‘It’s almost like I’m looking at a stranger. There are no words that can explain the joy this removed from my life.’ Asha says she began to notice that her sex drive had near diminished and her ability to enjoy sexual pleasure had disappeared since the LLETZ had been performed. She could no longer feel stimulation in her vagina and cervix, except for a small area around the clitoris, and her connection to her sexual self was severed in every way. Whereas before Asha possessed a ‘powerful sexuality that lived in so many ways’, the procedure left Asha paralysed, as if every sexual thought, fantasy and experience had been completely numbed. ‘I never thought that magical part of me could be taken away; this utterly broke me,’ she says.

It has been seven years and Asha is still reeling from a procedure that was touted as minor, but in reality was a life-changing injury to her sense of being. And she is not alone. In 2015, after Asha wrote an article about her experiences in Hormones Matter, Kate Orson, a 38-year-old journalist living in Switzerland, contacted her complaining of the same symptoms. The pair quickly connected. They shared their personal traumas, and confided in each other about the complications the LLETZ procedure had inflicted. ‘After the procedure 13 years ago, I didn’t feel like having sex, which was unusual for me,’ Orson explains, ‘When I did have sex, it was very painful and didn’t appeal to me. It wrecked my body. I was in a lot of denial about it for a while. I thought it was just psychological because I couldn’t find anyone else who had gone through the same thing, until I read Asha’s article.’

A LLETZ is performed once abnormal cells have been identified

Women have turned to the internet for answers

Orson wrote a blog post on Facebook about her ordeal after connecting with Asha and was surprised by the amount of women who responded. She then set up a private Facebook group called Healing From LEEP/LLETZ for sufferers of the procedure, which now has nearly 250 members who share the often traumatic side-effects of decreased sensitivity, pain and sexual dysfunction. ‘I’ve realised female pleasure isn’t valued in medicine,’ Orson says, ‘Labido is always rendered as pyschological. These procedures are done without thinking about how it would affect female sexuality. I have to go through the trauma of sex every time. It’s horrible.’ Orson added me to the Facebook group and the scale of the problem is startling just from scrolling through dozens of posts from women around the world. There are also corners of the internet and chat rooms where women post questions about the sexual impact of the LLETZ procedure, but scarcely anything from official medical bodies. Like with the vaginal mesh cases in the UK, which started at the grassroots level, awareness of this problem is only coming to light because of survivors.

When a LLETZ procedure is performed, cervical cells are essentially burned off using an electrical wire or knife. All official guidelines you can find on the internet do not include sexual dysfunction or decreased sensitivity as a side-effect of the procedure. The UK’s NHS website states ‘the benefit of treatment will outweigh the risks’. But Asha, Orson and many others disagree. It is commonly thought in mainstream medicine that orgasmic pleasure does not originate from the cervix, but there is a stack of evidence that suggests otherwise. The cervix has three neurological systems - the pelvic, hypogastric, and vagus nerves- yet most medical practitioners still subscribe to research that states the cervix is insensate. Desperate, Asha returned to Homerton Hospital, and visited numerous other medical centres, to ask for help with her sexual problems. She was passed from doctor to physician to therapist and back again for years, with pages of medical correspondence, which PlayGround+ has seen, rendering her issues purely psychological.

Many women have shared their stories on online forums

‘It has been so many years of doctors and medical practitioners looking me in the eye, and saying, “no, no, I’m sure you must be depressed and this is all in your head, you must have been abused as a child, it must happen because your mum didn’t love you etc.”,’ Asha tells me. ‘It was me against the system. Eventually it dawned on me that they actually didn’t know this could happen. Which is even more mind-boggling.’ Asha thinks her nerves were severed in surgery and it has left her sexually paralysed. Her, Kate, and all the other women I spoke to while investigating the issue theorise it is because female sexuality is not as important as male sexuality in medicine. As a point of comparison, surgery is usually offered as a last-resort treatment for men with signs of prostate cancer because it can cause erectile dysfunction. The side-effects of surgery, including sexual problems, are clearly stated to male patients before. There is also an abundance of nerve-sparing treatments for men to choose from, but there are none I am aware of for the LLETZ procedure.

Izzy*, a 30-year-old woman living in New York, underwent the procedure nine months ago and has since felt devastatingly disconnected from the world around her. Not only have the side effects from her LEEP surgery caused her to detach from sexual partners and friends, but she has also had to quit her job as a creative in the advertising industry because she is at breaking point. ‘I have been terrified to face what has happened because I know that once I do, I will fall apart,’ Izzy tells me, ‘I haven't faced the hurt that I know I have because of fear of not being able to go to work. Fear of not being able to continue living life and fake smiling because I know that once I do face this, I will fall into a deep depression.’ Izzy, like so many others, was told her LEEP procedure was minor. Her doctor didn’t explain the depth of tissue that would be removed or prepare her for what would be a deeply traumatic experience. Izzy feels robbed of her agency; of true consent. ‘If I had a chance to go back to the past I would erase what had happened and I would speak out for all the women going through this,’ she says, ‘This shouldn't happen and women should be informed. The lack of human connection is death. Is that what today’s medical practices are bringing us to?’

A deeper issue is that medical practitioners often aren’t even aware of the harm the LLETZ can cause. One woman, who wishes to be known only as Renée, wrote to me to explain the burden the LLETZ has had on her life, and the absence of care following it. ‘The doctors and nurses know nothing about the complications of the procedure. The emotional side effects of this are huge... Some days it was enough to be exhausting and barely able to cope... I felt bad, I felt emotional, worried, and in pain. Its after-effects had an impact on my relationship too, I had a hard time coping, and it hurt my relationship.’ Another woman, who did not wish to be named, said: ‘I feel awful about not being able to be a normal sexual partner. I will probably never be able to experience a vaginal orgasm again. At this point, I feel I'd rather die of cervical cancer than go to another doctor ever again. I feel deeply wounded.’ It is unclear how many others might be suffering in silence as well. What seems evident is that a glaring gap in medical assistance has brought together this group of women to try and heal themselves when doctors are unwilling or unable to.

Courtesy of Jo\'s Cervical Cancer Trust

The question that Asha grappled with for seven years is whether this was malpractice, or common practice with malignant consequences. She has found herself battling with the establishment, which she claims routinely tells her ‘female sexuality doesn’t exist or it’s only in the brain’. Asha filed for a malpractice suit in 2015, but it was rejected on the basis of lack of evidence. Frustration, disillusionment, detachment pushed her down a dark path that she has only now started to make sense of. ‘I was suicidal; I didn’t want to be in my body anymore. I hadn’t had sex for seven years. I couldn’t form emotional bonds.’ Having exhausted her avenues in the UK, Asha went on a trip to Bali to find alternative medicine, which then led her to Dr. Irwin Goldstein, director of San Diego Sexual Medicine, California, who was the first medical practitioner and researcher to accept her experience as valid.

Dr. Goldstein is renowned in his field for treating both male and female sexual dysfunction, and for helping develop viagra in the 1990s. He invited Asha to his practice for an assessment of her condition. Asha says it was like meeting a family member when she travelled to see Dr. Goldstein. Someone that listened to her story and accepted it as truth. After extensive physical and psychological examination, Dr. Goldstein has no doubt the LLETZ procedure can cause nerve damage and sexual dysfunction. ‘There is an obvious tissue injury at the end of the cervix after this procedure,’ he explains, ‘In women, orgasm comes from multiple places. The penis will make direct contact with the cervix and some women, like Asha, rely on this for healthy orgasmic pleasure and quality of life. This being taken away is life-changing. It can destroy a part of the woman’s life. It is just wrong that women are not prepared or told of this.’

A lack of basic research into female pleasure and gender bias in medicine is largely to blame, according to Dr. Goldstein. He points to the number of drugs that have been developed for erectile dysfunction compared to those aimed at women - which is zero - even though female sexual dysfunction is more prevalent generally. His team are currently undertaking a cadaver study to locate the depths of nerves in the cervix so they can advise that the LLETZ procedure be restricted to certain depths in some women to avoid nerve damage. Asha is Dr. Goldstein’s first case study, and he says ‘we should be thankful to women like her who have the courage to take on the system - this is the era to do it.’ He adds: ‘It’s wrong that you are harassed by doctors or turned away and told it is all in your head. Women are tortured by healthcare providers who say this is normal. We need to help women avoid this or provide alternatives. At the very least women should be told of the side-effects; it is all consistent with female pleasure not being as researched in medicine.’

Dr. Goldstein says the impact of LLETZ can be life-changing

Dr. Goldstein’s counterpart, Dr. Barry Komisaruk, a distinguished professor at Rutgers University, New Jersey, and author of The Science of Orgasm, is collaborating with him and Asha, among other researchers, to study the link between LLETZ procedures and decreased sexual sensation. Dr. Komisaruk traces the subject’s underrepresentation right back to the release of Kinsey Report’s Sexual Behavior in the Human Female in 1953. The report claimed the least sensory part of the female genital system is the cervix. But Dr. Komisaruk argues the results were misrepresented and the report’s own data contradicts this theory. The data shows that the cervix is not insensate, as many think it is, but that it is more responsive to increased pressure. ‘Clearly the cervix is sensate,’ he tells me, ‘We have evidence that the cervix has three different nerves. Women can feel it. It just got into general knowledge that it has no sensory response and medical practitioners still think it is true so they have no doubts performing this procedure. It’s a tremendous problem’

It is somewhat baffling that modern medicine still subscribes to a controversial report published in the 1950s, but this speaks to a greater unwillingness to give female pleasure the centrality it deserves. An overarching question that remains, however, is what are the alternatives? Cervical cancer prevention is simultaneously a pioneering way to stop the spread or development of a potentially fatal disease, and a possible threat to sexual health. What Dr. Komisaruk and Dr. Goldstein agree on is pushing for greater research and developing alternatives, and, at the very least, giving women the choice based on fact. The fact being that surgery on their genital tracts can cause sexual dysfunction. Dr. Goldstein also suggests women should be assessed on a case-to-case basis and introspectively examined to determine where they have orgasms to avoid severing certain nerves. Not all cells turn into cancer, he says, therefore other options and alternatives to surgery need to be explored.

Nerve system in the cervix courtesy of Dr. Komisaruk

Asha started to find solace in the work being conducted by Dr. Goldstein, Dr. Komisaruk and their teams. She has found a sense of recovery and has had positive sexual changes after a clinical pregnancy in 2016 (which unfortunately resulted in a miscarriage). Having regained some feeling in her pelvic floor, Asha is looking to the future with more optimism than she has felt in the seven years since her LLETZ procedure. What will be harder to overcome for her, and women generally, is a gender gap in medicine. Society tends to look to science and medical research to offer the answers. But medicine, like science, is a subjective force, open to interpretation and manipulation, and capable of ignoring or being hostile towards entire social groups.

In this case, women feel they have been deprived of choice, of informed and thoroughly-researched options, and have been blindly led through a tunnel of denial, misinformation and confusion. And perhaps most startlingly of all, doctors and healthcare providers aren’t even aware that women are suffering in this way. As Asha says, ‘Sexuality lives in so many ways; it’s the reason we might get dressed in the morning; it’s the energy that guides you through life. And for women, in particular, that needs to be protected.’

PlayGround+ contacted Homerton University Hospital to offer a reply to Asha’s claims, but they had not responded at time of writing. PlayGround+ has notified the UK’s General Medical Council about the potential dangers of the LLETZ procedure, and suggested they investigate the issue further.

If you want to find out more information about the LLETZ/LEEP procedure, visit our overview here.

*Asha and Izzy's names have been changed to protect their identity.

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