Continuing on from our Sweetening The Pill journey, inspired by the work of Holly Grigg Spall, writer Kate Orson got in touch with us about her cervical screening experience. We're so pleased to be opening up a conversation about gynae health in general, and to share Kate's story.
It seems like a no-brainer to attend a smear test, and take the advice of your doctor, but my own experience has left me questioning everything about cervical screening. 12 years ago after a routine smear test, abnormal cells were found on my cervix and I was referred to the Colposcopy clinic. I underwent a procedure called LLETZ (or LEEP as it used to be known in the UK) which involves using a wire loop with an electrical current to remove the cells. I was told that this was a minor procedure, that involved removing ‘just a few cells.’ It would be done under local anaesthetic and would take less than 20 minutes. I was given a leaflet that told me I’d bleed for a while, and then after four weeks, I’d be back to normal and be able to resume having sex, and using tampons etc.
However, that wasn’t what happened. Six weeks after the treatment I felt pain and tension in my entire pelvic area. When I first tried having sex, I felt no desire at all. I was shocked to find that although I orgasmed, my muscles contracted without any accompanying feeling of pleasure. It seemed as if my sex organs were too weak to work properly. As someone who has had an active and enjoyable sex life throughout my adult life, this was terrifying. Afterwards I felt as if I’d been physically attacked. A few more weeks past and I went to visit a doctor who told me that that perhaps I had a bit of scarring and she would examine me next time. I was surprised to hear about the possibility of scarring. How could I have been scarred if the procedure removed ‘just a few cells?’
I went home and Googled ‘scarring after LLETZ procedure.’ A webpage informed me that the treatment was to remove the scarred tissue with LLETZ. Now, it seemed to me that was absolutely ridiculous, to cure a problem with the same method that had caused it. I didn’t return to the doctor.
I’d been interested in yoga and meditation for a few years, and since I could feel a lot of physical tension and pain in my pelvis, I decided that I would try meditation to release it. I also practised yoga, took up belly dancing, and had lots of deep tissue massage on my lower back and hips. I read books on Tantra and Taoist sexuality, and over time, I was able to relax physically and emotionally and feel desire again, and improve the quality of my orgasms. 12 years later I still feel lots of tension in my cervix and pelvic area, but I do feel like I am slowly moving towards healing, although I’m not sure my body will ever be back to how it used to be.
I never told anyone about the experience, assuming that what had happened to me was some kind of ‘freak’ reaction. This was until one day a few months ago, I found an article written by a woman called Asha. It was like reading my own story. Asha had not only lost her sexuality, but also struggled with her creativity, and physical sense of being in the world. These are the more subtle side effects of LLETZ, that I had also experienced, that I had struggled to comprehend. I contacted Asha, and through getting to know her I realised that it wasn’t my body that was the problem, it was the treatment itself. I’ve since learnt that many other women have suffered the same devastating side effects.
When Asha hadn’t been able to get any answers from doctors in the UK about what happened to her, she flew to the US to consult with Dr. Irwin Goldstein, director of Sexual Medicine at Alvarado Hospital, San Diego. Dr. Goldstein, is now conducting research into the loss of sexual function in women that undergo LLETZ. Dr. Goldstein told me that the LLETZ procedure actually removes ‘a few trillion cells,’ which is up to 2cm of the cervix. I was shocked at how naive and under informed I’d been at the time. One of the main problems with LLETZ seems to lie in the fact that the procedure was introduced before there was any understanding of the anatomy of the cervix. There was an assumption that the cervix had no nerves, and played no role in orgasming. This was in part based on The Kinsey Report On Female Sexuality. Kinsey reported stimulating the cervixes of 800 women with a cotton bud, and they couldn’t feel anything. Dr. Goldstein says "The current nightmare is a misrepresentation of the cervix as not being sexual. In our literature the cervix is quite sexual, and in fact it has triple innervation (three paired nerves run through the cervix). There are extremely few organs with trible innervation. The value of the cervix to homeo sapien existence which is based on survivability and reproduction is huge. With a malfunctioning cervix reproduction is severly impaired.’’
Many doctors perform LLETZ are not up to date on the latest research and still tell women that the cervix has no nerves. This means that they are cutting into a part of the body that they do not fully understand, with no awareness of the sexual implications. Dr. Goldstein’s isn’t against the procedure, although he acknowledges that perhaps in the future there may be safer treatments. What he wants is for women to have the opportunity to maken an informed choice. "When discussed appropriately a woman might say, ‘Um, I’m not ready to give up this quality of orgasm, maybe there’s other things we can do, or they might say, ‘I’m not that interested in sex...I don’t want to have cancer.’"
The unfortunate issue about gynaecology is that the sexual consequences of operating in the vaginal area are not discussed. Medicine has to grow up and take on sexuality, rather than dig their head into the sand and ignore it, which is more or less the current standard. Glasgow GP Dr. McCartney recognises that women are not being given informed choice about the whole cervical screening process. In a blog post she compares the information that men are given about prostrate screening as opposed to the lack of information women are given about cervical screening. She says "Men are given numbers, pros and cons, and offered an informed choice – women are given platitudes about yoga, green tea and chocolate cake. The cervical screening leaflets do not spell out the risks of overtreatment and the potential cervical effects and association with preterm birth."
Women are encouraged to don pink t-shirts and campaign for more cancer awareness. We are supposed to be #CervixSavvy, as if the decision to book our next smear test and ignore our niggling fears was one of intelligent awarenesss. It seems pretty ironic considering the medical system’s widespread ignorance about the true nature of the cervix. Instead of being informed, we are being manipulated, and treated as if we are not intelligent enough to be told the facts. After my LLETZ I didn’t attend a smear test again, apart from once after giving birth, as part of a check-up to make sure I had healed. This decision was more based on fear rather than rational thought. And yet I knew, that most abnormal cells return to normal, and that they are not cancer.
I just couldn’t imagine how I could cope with putting my body through that devastating treatment again, so I didn’t see the point of a smear. I first discovered Dr. Margaret McCartney through an article she wrote in the Independent about why she doesn’t have smear tests. I was reassured to know that choosing not to have a smear, can be a rational, considered choice. In her book 'The Patient Paradox: How Sexed-Up Medicine Is Bad For Your Health' she analyses the statistics behind the cervical screening programme. Although screening does save a small amount of lives, it does so at the risk of harming a larger group of women through the risks of cervical biopsy and LLETZ. For example both of these procedures increase the chances of premature birth. McCartney argues that smear tests should always be an informed choice.
Doctors aren’t always proactive starting a discussion about the risks of procedures, so we need to inform ourselves. We need to know that these doctors may not be up to date on the research in their own field. For example when I contact the cervical screening programme, they didn’t know that there was already existing research about the negative effects of LLETZ on sexual function. We also need to know that if something hasn’t been researched we may experience side effects that are completely unheard of. But that doesn’t mean they can’t happen.
Asha and I experienced huge changes to our emotional wellbeing after the LLETZ that weren’t just a result of depression from losing our sexual function. It’s possible that because the vagus nerve (a nerve important in stress regulation and emotional wellbeing), connects up to the cervix, it could cause psychological issues. No research has beem done in that area, so doctors cannot inform women about this. In the absence of adequate research women may experience side effects that the existing medical literature just can’t explain.
Cancer is a scary word but it may not be in our best interests to dive into treatment with blind fear and a ‘trust your doctor’ attitude. The medical system is not just about healthcare, but about profit, and it is most often women’s bodies that are subjected to these regular ‘preventative tests.’ GP surgeries are paid for every smear test they perform. In this medical culture where women’s right to choose is not encouraged, it is so vital that we inform ourselves, and support each other. Only by standing up for ourselves can we ever move towards a system that truly values our health.
Kate Orson is a British writer now living in Switzerland. She blogs about recovering from the LLETZ procedure and also has a support group on Facebook. If you have been effected by LLETZ, and would be willing to contact Dr. Irwin Goldstein, you can help with his research so that the medical community can fully understands the risks of this procedure and start to inform women. Further reading: The Patient Paradox; Why Sexed Up Medicine Is Bad For Your Health, By Dr. Margaret McCartney