Guest post by Kate Orson, founder of the Intact Cervix campaign

We hear so much in the media the importance of going for a smear test – of how it ‘just takes five minutes,’ and how there is concern that the number of women attending has dropped to a twenty year low. But little is said about what happens if you have cervical abnormalities and need treatment after a smear.

Cervical abnormalities are relatively common with around 220,000 women being diagnosed with them each year. Abnormalities are classified into levels (CIN 1-3), and usually the lower levels of CIN 1 and 2 don’t require treatment. CIN 3 is generally treated with a procedure called LLETZ, which uses an electrical wire to remove the abnormal cells. Doctors say it’s a simple, minor procedure, but women are telling a different story.

Hundreds of women, myself included, after have found ourselves experiencing side effects that our doctors never warned us about. We have found that we’ve lost sexual function, that our libido plummets, that our orgasms become weaker, and that sex becomes painful. Women are finding they experience vaginal dryness, problems with constipation, incontinence, and pelvic pain. There are other ‘whole body’ effects too, such as nausea, fatigue and headaches.

We have connected together and share our stories in a Facebook support group ‘Healing From LLETZ.’ Through this group, we’ve found that one thing is common to almost all of us: that doctors deny and minimise our side effects. They tell us that they are ‘all in our heads’, and aren’t related to the LLETZ. Women have been told to seek counseling rather than being given adequate medical treatment for the problems they are facing. What is going on?

In 1899 a book was published called The Abdominal Pelvic Brain by Bryon Robinson. The book has detailed drawings showing neural connections in the cervix, which Robinson called ‘the pelvic brain.’ As modern medicine advances all the time, and life expectancy is extended, it may surprise you to know that most doctors today have no knowledge of this neural system. Gynaecologists do not actually study pelvic neurology in the same detail as they did in the past. Many gynaecological issues are caused by nerve damage, and this is the reason why the LLETZ can have such a devastating effect on women’s physical and emotional health.

There are a few doctors out there who are aware of the importance of our pelvic neurology, and the harm that can happen when these nerves are damaged. Dr. Irwin Goldstein, a sexual medicine expert in the US, is researching the damage to sexual function that occurs from LLETZ and other gynaecological procedures – such as vaginal mesh and labiaplasty. He is one of the few doctors that recognises the cervix as a sexual, orgasmic organ, with more neural connections in it than the clitoris!

When you Google ‘cervix’ you will find that the majority of ‘hits’ that come up are related to cancer. Of course, having good healthcare that reduces the rates of cervical cancer is vitally important. However, it’s worth thinking about why our culture has so little to say on the cervix and its vital connection to our sexual function.

Glossy women’s magazines such as Cosmopolitan and Glamour are well aware that the cervix is orgasmic, and give women helpful advice on how to connect with this part of the body, but a doctor may likely (mis)inform you and claim that ‘the cervix has nothing to do with sex.’

When faced with a choice between a invasive procedure that may destroy your sex life, or the chance of developing cancer many women would opt for the treatment. But the fact is that women haven’t been given this informed choice. Abnormalities are not cancer, and no illness gives doctors the license to bypass their legal obligation to informed consent.

It’s worth noting, as one Guardian article reported, that in a clinical trial in Germany men with prostrate cancer were given a type of advanced robotic surgery ‘that aims to preserve the fine architecture of microscopic nerves around the prostate – and with them the patient’s sexual function.’

Women have a ‘fine architecture of microscopic nerves’ too, but that knowledge seems to be have been lost along the way, disappeared amidst a sea of targets and, often, over-treatment. The current standard of treatment is based on a process called ‘see and treat.’ A woman comes along for an examination of her abnormalities at a colposcopy clinic. The doctor will often just take a visual look (rather than a biopsy) and then offer to treat her there and then, to save time and NHS resources.

Doctors get paid bonuses for ‘see and treat.’ But it also means there is a margin of error. For example, a woman’s CIN may look like level 3, but the tissue removed with the LLETZ is examined later it may turn out to be only CIN 1. She may end up with health issues for the rest of her life due to over-treatment.

I speak to women everyday who tell devastating stories from the side effects of LLETZ. Some women have separated from their partners, or are unable to work. Others are self-medicating to deal with depression and pain. Some live with PTSD, because having part of your cervix removed can affect the body in a similar way to an act of sexual violence.

If women do decide the LLETZ is the best option, they need proper support afterwards and acknowledgement of what has happened. The gaslighting by doctors that is currently occurring only adds to their trauma.

It should not be down to women like me to share ‘lost’ information about pelvic neurology, while some doctors are still out there telling women ‘there are no nerves in the cervix.’ That is no way to do medicine.

Find out more about Kate’s campaign at intactcervix.com, or on Twitter @intactcervix.