Twelve years ago, when I was 25 years old I underwent a LEEP procedure for removing abnormal cells from my cervix. I was told this was a minor treatment, that would be done under local anesthetic in less than 20 minutes and it would involve removing ‘just a few cells’ from my cervix. I remember being given a leaflet that told me I might bleed for a while, and then within a few weeks I’d be back to having sex, using tampons and swimming etc.
After the procedure, I came home and started crying. I was surprised to be upset and I told my boyfriend that I didn’t know why. I felt completely numb. He told me understandingly that it was because I had an operation, but I told him ‘’it was just a procedure.’’ Everything I had been told had led me to believe that it was completely minor.
I ended up with an infection, and I assumed that was why four weeks later I felt pain in my pelvic area. It was difficult to sit up and all my stomach muscles felt weak. I kept waiting to feel better, waiting to feel in the mood to have sex again, but I didn’t.
In the end, I had sex, because it was six weeks after the LEEP, and I just wanted to get back to my normal life. I had only been with my boyfriend a few months before the LEEP and it felt weird not to have sex with someone for so long that I was only just getting to know.
Everything felt painful and sore. When I orgasmed, I had this weird sensation of my muscles contracting but no feeling of pleasure. I was shocked and terrified. What on earth had happened to my body?
I went to my doctor to find out what was happening. She told me that perhaps it was a bit of scarring on my cervix. Scarring? I was confused. I thought they were just removing a few cells. How could I scar if it was just a few cells? She told me she would examine me next time and I went home and googled ‘scarring after LEEP procedure.’ I read that the treatment was to remove the scar tissue with the LEEP procedure!
I was shocked. There was just no way I was going to have the same procedure that had caused the problem to cure it. I never returned to the doctor. I felt completely isolated and alone. I looked online to try to find other women that this had happened to, but all the stories seemed to suggest what I had been told; that the LEEP was a safe minor treatment.
I concluded that what had happened to me was a kind of ‘freak’ reaction of my own body. I stayed away from doctors, and did everything I could to heal myself naturally. Since I had huge amounts of tension in my pelvic area, I practiced yoga and meditation to try to relax as much as possible. I also had deep tissue massages in my hips. I found that this all helped to release tension, so that sitting down wasn’t such a problem anymore. I also learnt some tantra exercises to help me recover my ability to orgasm, and enjoy sex, but it was still painful for many years, and I still have constant tension in my pelvis.
A few months ago, I was searching online, as I did from time to time, still wondering if it was really true, that I was the only one that had this strange reaction, and this time I did find someone. I found a Hormones Matter article ‘The Unspoken Dangers of LEEP,’ by a woman named Asha. Reading it was like reading my own story. Not only did she have the problems with sex that I had, but she also had more intangible symptoms, that I had also experienced but struggled to put into words. This feeling of losing your physical presence in the world, and of losing creativity, and the joy of being alive. The article also had a string of comments from women also experiencing side effects.
I immediately made contact with Asha and we arranged to talk on Skype. It was like finding out I had a long lost twin after 12 years of being completely alone.
That whole week I found myself shaking constantly and not sleeping well as it began to sink in that the reaction I had wasn’t something ‘wrong’ about my body. There was something wrong with the medical procedure myself. I googled constantly and found more and more stories of women also losing their sex lives because of LEEP.
When Asha could not get answers from doctors in the UK she went to the US to consult with Dr. Irwin Goldstein, Director of Sexual Medicine at Alvarado Hospital in San Diego, California. From Dr. Goldstein she learnt about the problem with LEEP. The procedure was introduced before any anatomy on the cervix had been done. Women are frequently told that the cervix has no nerve endings, but up to date research has found this to be completely untrue. There are three pairs of nerves that connect up to the cervix that can be damaged by the LEEP. This damages orgasm function.
When I spoke to Asha, I learnt that it was not just a few cells that were removed from my cervix. It is up to two cm of the cervix. The LEEP procedure uses an electrical wire, to cut away the abnormal tissue, and as Dr Goldstein says, it’s more like ‘a few trillion cells’.
LEEP and Female Genital Mutilation
Asha had been so devastated by the effects on her life that she contacted an FGM (Female Genital Mutilation) charity, to try and help her makes sense of this profound loss.
In the following days, I thought about Asha’s words. Could it really be classed as FGM? Just the thought of it, made me go into a heart-racing state of panic, that meant I needed to call up close friends to calm down and feel safe again. I wondered to myself, if it wasn’t FGM, then why did my body have this extreme reaction?
I looked up the WHO definition of Female Genital Mutilation:
“procedures that involve partial or total removal of the external female genitalia, or other injury to the female genital organs for non-medical reasons.”
Switch external for internal, and remove non-medical reasons and LEEP comes under this classification. As I read about the life long implications of FGM, and how many sufferers had nightmares, it suddenly made sense why I had frequently woke up screaming since I had the LEEP. I had never associated it with the procedure and these nightmares had always remained a mystery to me until then.
Sexual Trauma and LEEP
During LEEP, we are given anesthetic so that we don’t feel pain. We are told that the procedure is for our own good. This creates a narrative in our head, that we have been through a minor procedure, but I think that the body experiences it on a more primal level.
My body experienced it as a huge sexual trauma that my cervix still carries physically. The tension I experience in my cervix and vagina is like a constant state of fight, flight or flee. I notice this trapped energy, getting reactivated, as I read and write about the cervix, and try to process this very physical trauma that I have experienced that is still stuck in my body.
There are many women who say that they are completely fine after the LEEP, and here I think there are two possibilities. One is that when a piece of their cervix was removed it didn’t hit on any of the nerves. The other possibility is that women are experiencing side effects that they may not attribute to the LEEP.
Nora Coffey is the founder of HERS, a non-profit organisation that campaigns for informed choice about hysterectomy and its devastating side effects. As she went on the campaign trail she would frequently meet women who said they were completely fine after hysterectomy, even that it was the best thing that ever happened to them. Then as she talked to them more they would realize, that they were experiencing health issues that they did not attribute to the hysterectomy until they connected up the dots.
When we are constantly told that LEEP is safe and minor, we may have no way of understanding that other issues we experience, such as fear, anxiety, and depression are a result of this procedure.
Women are being imprisoned in a narrative that they must submit to these treatments to save them from cancer, but abnormal cells are not cancer. Eighty percent will not grow into cancer.
More Research Needed
What we need is more research. Research into why some cells recover and why others progress into cancer. We need to understand if lifestyle changes can boost the immune system and improve recovery rather than cutting into the bodies of otherwise healthy women. The Gynecological community also need to acknowledge the side effects of LEEP and assess if there are safer options.
There are huge health risks to losing your sex life and the immune-suppressing depression that accompanies it. The cervical screening program saves a small amount of lives, but for many women like myself the damage may outweigh the benefits.
Doctors need to learn that when they cut into the cervix they risk damaging a woman’s health and emotional well-being. Being harmed by a medical procedure when fully informed of the risks and making an informed choice is one thing. Knowing that doctors have blindly cut into your body, because they do not have basic anatomical knowledge is an absolute injustice.
Long ago, there was no awareness or acknowledgement that rape or sexual abuse was a huge trauma that affects a person’s entire life. A rape victim had no narrative to make sense of what has happened to them, no way of articulating and beginning to process the trauma.
I carried this trauma for 12 years, unable to process it, because I did not fully understand that I had been traumatized.
Asha and I want to give what has happened to us a name. To inform women of their choices when the medical community does not. We have started a campaign called Intact Cervix, to educate women of the deep enjoyable pleasure from the cervix, and their right not to have it taken away.
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