LEEP is described by the planned parenting website in the US as being safe and effective. I know I read something similar like that 12 years ago, and I put my trust in my doctor, and thought little more about it. There’s nothing like reading the words ‘safe and effective’ by a medical expert to put your mind at ease.
But is LEEP really safe? And has there ever been enough research to prove it? That is highly questionable. I’ve been researching into how the LEEP procedure was introduced and what research was done about it beforehand. If you’ve been reading my previous posts you’ll know that there has been no research into women’s internal neurology, so the effect of LEEP on the nerves in the cervix is completely unknown. This means doctors do not know how LEEP may effect nerves involved in orgasm and sexual function.
LEEP (or LLETZ as it is also known) was introduced in 1989, following a study on 111 women. It was found that a small percentage of these women, (9), had excessive bleeding afterwards but the rest of them were fine. The study doesn’t mention how LLETZ might effect a woman’s fertility, or sexuality. The researchers admit that the long term complications of LLETZ were unknown.
Is this enough information to introduce LLETZ on a mass scale and to know that it is safe? I have looked for other research, some other information, about what was known about LLETZ when it was introduced as a procedure in 1989, but I have found nothing.
I had assumed that doctors fully understand the implications of the treatment they are giving people. It appears that they did not.
I know some of the long term complications because I have lived with them for the last 12 years. And since starting a facebook support group for other women I am hearing about the side effects every single day as more women join. These include miscarriage, abdominal pain, leg pain, chronic yeast infections, chronic vaginal eczema, painful sex, inability to experience pleasure when orgasming, lack of sexual desire, and chronic pelvic pain. Add to that the emotional and physical trauma, of having a part of your body amputated.
We have many different symptoms but we all have one thing in common, doctors have ignored or minimised our symptoms, or been told that they are completely unrelated to the LEEP.
There are other symptoms that are hard to pin down, that myself and another woman Asha, have been trying to articulate and explain. After our LEEP we have experienced a profound sense of disconnection from the world around us. We feel that we have lost creativity and memory, our very sense of being human, sensual beings. I can remember watching a film with a couple having sex, and feeling like it was an almost alien act. LEEP profoundly disconnected me from my sexual self and I am still trying to return to how I was before. Of course these symptoms exist in a no-man’s land, to be dismissed as ‘psychological’ by medical professionals. It’s much easier to do that than to admit, that there is a huge research gap, of understanding the neural networks in the cervix, and how they connect up to the brain.
I contacted the cervical screening department in the UK because I wanted to report my side effects. I wanted other women to know that when that when they have LEEP they risk losing their sex life, because if I had known that I would never have had it. I was told, ”there are no published reports linked to problems with sexual function as a result of the procedure.” When I wrote back to tell them there was research they looked at the studies and told me they were too small to be of significance, and that they were too subjective.
Now this is the irony. That doctors are not listening to women who report side effects from LEEP. They will say there’s no research into what is being reported, and if the research hasn’t been done, then our side effects exist in no-man’s land, unacknowledged. And if a woman does report in a scientific study that her sex life has been diminished, then her voice is invalid because it is subjective.
There isn’t enough research to prove LEEP is safe, and yet in the meantime, until someone does the research, every day women will risk devastating consequences from a procedure they are being told is safe and effective. We will be dismissed by doctors because it’s much simpler to turn us away, and uphold the status quo than really examine what’s going on here.
All this would be perhaps almost okay, if LEEP had saved my life, if my life had been at risk and this was the only option available to me. But I’ve done my research now, and I just don’t believe this to be the case.
In a 1977 research paper in the journal cancer by Dr. Maureen Henderson says,
it is difficult if not impossible to estimate from the analysis of available vital statistics how much of the fall in invasive cervical cancer death rates is the result of continued improvement in general hygiene and medical care and how much is the direct result of disease control programs based on early detection with exfoliative cytology (cervical screening)
I’ve been told by people I’m lucky I don’t cancer, but I have never seen it that way. I don’t believe this narrative, that my health was in danger. Abnormal cells are not cancer. ”Pre-cancerous is a provocative term that terrifies women into agreeing to medical procedures, and assuming that they have no other option. Ignoring symptoms would be reckless, but wanting to keep your healthy body intact is not.
The cervical screening programme and LEEP procedure may save a small number of lives, but how do we know that we aren’t just shuffling around health issues, by causing far great numbers of women stress, trauma and ill health it causes from side effects that can also not be quantified.
Olivia Bryant, Sexologist and found of Self-Cervix, a cervical healing programme for women, explains how cervical smears and other procedures can often lead to numbness, and trauma in the cervix. Cervical screening campaigns, encourage us to ignore our fears, and brush them away for the sake of our health, but what if that little voice inside of us, it actually our body’s inner knowing? If you sign up to Olivia’s mailing list she has a free video which explains about how to make a smear test, a more empowering, safe experience.
This kind of information is what we need. We need to understand the cervix’s sexual function, and not just the medical issues. We need to be given informed choice about smear tests and treatment. And that means real informed choice. Not just hiding behind ”no research” and dismissing women’s real concerns.
We need to choose if we want to risk losing our sex life, having a miscarriage or a premature birth. We need to know, even if that risk is small. Because it could be us. We also need to know about alternatives.
To call a treatment that can result in the loss of life, as safe and effective, is to lie and mislead women.
The gift and the tragedy of this experience is that I have completely lost trust in doctors. If it is possible to get away with doing this to women’s bodies, then our ‘civilised’ western world is much darker, and misogynist, than I have been led to believe. I know now to ignore any medical professional who tells me not to google, who does not want me to think for myself. While the medical system continues to profit from women’s bodies, we must inform ourselves, support each other and above all, question everything.