What Doctors don’t tell you about LEEP (LLETZ)

12 years ago I underwent a procedure called LEEP (Or LLETZ) for removing abnormal pre-cancerous cells from my cervix. These are the kind of cells that could turn into cancer years later.

Everything that I’d heard about the procedure led me to believe it would be completely minor. I’d bleed for a while and wouldn’t be able to have sex for four weeks, but after that I’d be back to normal, using tampons, swimming etc. I was nervous, and also confused about why at the age of 25 my cells were already abnormal, but the doctor had reassured me this was a minor procedure that would be performed in under 20 minutes with a local anaesthetic.

A week or so after the LEEP I started bleeding non-stop and went to the hospital and was given antibiotics for an infection. When six weeks after that it still felt sore, and my stomach muscles felt barely able to hold my body in a sitting position, I assumed that this was because I was just taking extra long to heal from the infection.

Except it never did really heal. The first time I tried having sex it was painful. There was also something wrong with my ability to orgasm, it felt really weak compared to what it had been like before. My sex drive had also completely disappeared. I just had no desire to have sex, but as I was in a new relationship where previously the sex had been really good, I persevered, hoping it would get back to normal.

I returned to the doctor and was told that perhaps it was a bit of scarring. She told me she’d examine me on my next visit. Perhaps this was a mistake but I went home and started googling ‘scarring after LEEP’. I found a webpage, that told me it could be burnt off, using the same procedure I’d just underwent.

At this point my gut instincts kicked in. There was just no way I was undergoing the same procedure that had caused the problem to solve the problem. Perhaps the doctor would have suggested some completely different treatment, but fear, trauma, and mistrust made me decide the safest thing to do was not go back.

In the past I’d had success curing health issues with alternative methods. In my early twenties I’d had chronic fatigue syndrome, and recovered completely when I began practising yoga everyday. A few years later while studying for exams I had a backache where I couldn’t sit down for more than 15 minutes at a time. When a chiropractor and osteopath only fixed the problem temporarily, I took the advice of a friend and started meditating while lying on my back, focusing on the tension I felt and trying to relax it. I did this and within a few months of long meditation sessions, I could sit down long enough to watch a film at the cinema, and even go on a 7 hour train journey.

At the time I couldn’t allow myself to grieve for my lost sexuality. Instead I operated with a kind of blind faith that I could heal myself. I started meditating for hours each day, practising yoga, and belly dancing, to help release the tension I felt in my hips since the LEEP.

Before all this had happened I’d once had an intense sexual experience in which I had an orgasm that seemed otherworldly. The sense of pleasure I felt didn’t seem to come from my own body, but was like something that whooshed through the air, and was planted inside of me.  I joked about it being an ‘orgasm from god’ (although I’m not religious but spiritual), because it felt exactly like that!

But this sexual experience, had planted a seed inside of me, and before the LEEP I had been reading books about Taoist and Tantric sexuality and become interested in the idea of a relationship between sexuality and spirituality. This gave me the hope that even though my body felt sore and damaged there was a way of healing by tapping into this sexual energy which the books told me was universal spiritual energy.

Over time I did heal myself to a great extent. With the help of some massage techniques I learnt at a tantric workshop, I was able to to relax my body enough to enjoy sex again, and have better orgasms. I found that getting in the mood took a lot of effort, but once I got there it was enjoyable. My sex drive didn’t return to what it was, but I did at least come to a deeper understanding of sexuality, which felt like a gift out of all of the pain.

A few years later I was pregnant and something amazing happened. During the whole 9 months of my pregnancy my sex drive was completely restored. I have no idea why, and after the birth I did return to having a low sex drive again, but this experience gave me faith that there was nothing seriously wrong with my body, and that it could in time be healed.

Being a mother took over for pretty much the next five years of my life. Sex was much better than before the pregnancy, but I still didn’t have much of a sex drive. I found myself ignoring the problem, telling myself it was normal to be tired and not in the mood for sex, because I was a tired parent now, but deep down, I knew that my issue went much deeper.

From time to time through these years, I’d always wondered if this had ever happened to another woman. I’d googled from time to time, and since I never read of anyone else experiencing this I assumed it was just a ‘freak’ reaction of my own body. But one day I discovered a story that read so much like mine I was in complete shock.

What was most shocking and quite amazing to me, was that the woman described changes in her creativity, and in her very sense of perception of the sensory world around her. These were all symptoms I had experienced, but it was almost like there was no way I could grasp how a ‘minor’ treatment on my cervix could have caused all of these.

I read the comments in the article and discovered other women had been dealing with painful sex for years. I began to hone my google search and discovered more and more women who were dealing with the long term side effects of LEEP.

After reading about all of these women my perception completely shifted. Before I’d kept pretty quiet about my experience. It was like I couldn’t find the voice to tell my story because I thought I was the only one. And I couldn’t see the point in telling my story since I didn’t want to put women off having smear tests.

Now as I research more I have heard anecdotally from some women that another procedure called LASER seems to come with less side-effects. If you are going through this at the moment you might want to ask your doctor about it.

I am also finding there are good, scientifically- based reasons why some women may wish to avoid having smear tests completely. Dr. Margaret McCartney explains that despite some of the devastating stories we hear, cervical cancer is a rare disease. Because of the emotional anxiety testing causes, and the side effects of intervention, the risks do often outweigh the benefits. In her book The Patient Paradox: Why Sexed Up Medicine is Bad for Your Health she explains why each woman must make an informed choice and weigh up the risks for themselves before deciding to go for regular testing.

There are the risks of LEEP that were never mentioned to my young, naive, 25 year old self. The risk of cervical stenosis, of having a miscarriage, or a baby born prematurely. And there is this risk that seem completely unspoken; the destruction of a woman’s sexual self.

Asha, the author of the Unspoken Dangers Of LEEP article I linked to above was told by her doctor that she didn’t need to worry since there are no nerve endings in the cervix. However my tantric research led me to discover that women actually have three different kind of orgasms, clitoral, g-spot and cervical.

Feminist Naomi Wolf went through a similar experience to me and Asha, (though for different reasons) which she documents in her book Vagina.  She visited a doctor who explained to her that each woman has a slight different arrangement of nerve endings in her cervix, g-spot, and clitoris. This solves the age-old argument of whether the g-spot exists or not. Sexual sensation is slightly different for every woman and not all about the clitoris.

When Wolf temporarily lost her sexual sensation, She also notices she loses her creativity, a sense of transcendence and the brightness and colour that she normally perceived in the world. From this experience she learns that in a sense our cervix, vagina and clitoris are actually an extension of our brain.

It was learning this that made me understand many strange aspects of my life since the LEEP. I have had difficulty remembering dreams and also with my creative thinking. I have also struggled with feeling like I am really connected to things. For years I struggled with having the physical strength to do everyday tasks and to really ‘be’ in the world. These are all things that seem quite intangible and difficult to articulate, but when you have been in touch with your sexuality and creativity, losing it is like losing your self.

As I read Wolf’s words and heard from other women, I have completely reframed my experience. It’s not a weird side effect that my body had, it’s a perfectly understandably reaction to having my body cut into. I am shocked that this is considered an acceptable way to treat women’s bodies.

I am also beginning to realise that what happened to me was an act of violence. Immediately after the treatment, I remembered experiencing a pretty constant state of extreme fear, but I felt that there was nothing I could pin my fears onto. My job was stress-free, and life had been good. I have also had screaming episodes in my sleep for years that started around the time of the LEEP. I never remembered what was happening in the dreams, but this symptom also mysteriously disappeared while I was pregnant and for the first two years of my daughter’s life. Ever since I discovered that other women were effected like me I have found myself shaking as I read and research cervical smear tests, and the LEEP. Having read the work of trauma expert Peter Levine, I know that this shaking is a natural way in which the body releases stress after trauma.

It’s as if finally after all these years my mind has caught up with what my body always knew – that this ‘medical procedure’ was an act of sexual violence. It is based on an archaic understanding of how women’s body’s work and a gross disrespect of the relationship between body, mind, creativity and sexuality. I do not understand why doctors are doing this to women’s bodies. Is it because they do not understand what happens to us? If it took me 12 years to speak up I assume there are other women like me, who are silenced and traumatised by an act of violence that they cannot name.

To my 25 year old self, orgasms were pretty high up on my priority list. If a doctor had told me that there was a risk to my sex drive from the procedure I know I’d have walked out. I don’t have smear tests these days and I’m not worried about abnormal cervical cells (in most cases they don’t turn into cancer). Real symptoms are something to address and take seriously, but I never had cancer. I didn’t have symptoms. This preventative treatment, at least for me, is far more damaging than it’s benefits. Having a life with depression caused by sexual dysfunction, or an increased rate of heart disease due to lack of orgasms are health threats too. I’m doing well at rebuilding my sex life, and I don’t want to risk that. I’m in complete agreement with Dr McCartney, the risks of treatment for abnormal cells far outweigh the benefits.

Have you side effects from LEEP or from other routine medical procedures? Were you informed of the risks? 

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