Dyscariosis and the Threat of Cervical Cancer
I was 33. I was in love, although more realistically heartbroken and pining. This wasn’t unusual for me, I was never very good at choosing a partner, I was fiery and volatile in my lifestyle, and had gone through a series of painful and passionate relationships in my late 20s and early thirties. My addiction to love was always to my detriment. When I fell, I fell hard, and always with the wrong ones. But yet somehow despite the pain, in this wild messy state, I thrived. It drove me forward. It was part of me. I was addicted to life and love.
I saw myself growing old, laughing. I loved to dance, to flirt, to draw and create characters in my mind and in my work. I used to cry, laugh and make jokes. I was employed in a creative job and was passionate and truly alive.
In August 2010, after a routine cervical smear I was informed, that I had a small cellular change in my cervix, known as mild dyscariosis that threatened cancer if left untreated, and that I would have to undergo a minor procedure to remove these cells. The procedure is called a Loop Electrosurgical Excision Procedure, or LEEP. It is also known as LETZ in the US, and is similar to a Cone Biopsy.
No Nerve Endings in the Cervix?
I was slightly worried, but reassured by my doctor that there was nothing to even consider as a side effect with the LEEP procedure. There was no risk at all, she said, as (which you may also have been told), there are apparently ‘NO’ nerve endings in the cervix.
I was surprised and dubious at this statement, having not only experienced pretty much all my pleasure and emotional pain from precisely that region, but also been used to very intense cervical contractions, both though orgasm, and the dull aches of menstruation.
I went online, and even more surprising found nothing to explain this part of the body neurologically, at all.
Nervously I agreed to the procedure and endured it without complaint.
Post LEEP Nerve Damage
On returning home however, things soon began to feel very different. After a few days, possibly a week, I was suddenly struck with a dark, eerie hollow emptiness. I knew I had been cut into, and was therefore injured, and so put it down the possible fragility of healing. But it wasn’t long before I shared my first sexual contact, and then things then became very real.
Where once there had been a rush of blood and sensation, there was nothing. No electricity, warmth or change in my body. I was even more shocked, however when the orgasm I was expecting, had virtually vanished into thin air. Like the muscle had literally been cut out of my body. I felt hollow inside.
As the horror set in silently, as I suddenly faced the realization that this wasn’t just a fragility, or a healing problem, something I could run away from and escape. This was very serious. A deep and disturbing deadness inside, that as I explored further seemed to become emptier and more upsetting.
I tried to fantasize, to escape. I asked myself, who I could bring to mind for comfort. Something that would previously always entertain and distract me from a discomforting moment of loneliness or boredom, and would easily generate a feeling of hope and love and a rush of desire. But nothing happened.
Damage to Those Nerves Affects Everything
A black hole had appeared in my mind, shrouding the imagery I craved, my past memories and lovers, had vanished and lost all meaning. I literally wasn’t able to visualize or feel. I went to bed, and the room suddenly felt more real, solitary and isolating than it had ever done before. Even loneliness, and the painful ache for another had completely gone.
It felt that in my womb, something had been cut. As though a strong elastic band that held me together in my middle, that resonated and warmed me, and joined my mind and body with the sparks and excitement of life, had been severed.
My creativity soon also turned to a dismissal grey around me, I could see it, but wasn’t able to respond. I couldn’t feel expressions, connections, vibrations or meanings. As if life itself became fake and tacky, like I was watching a play or performance. I was looking at the actors but could see the ropes being pulled backstage, just waiting for the end of the show. My world had lost its meaning and its colour.
As I seemed no different on the outside, I managed to I hide this for a while at work, but my job was creative, and I knew it would not be long before I would have to leave. Previously I had always felt like I was waiting for my big moment, the next big thing, anticipation that one day my magical hidden talents would be discovered, that I had something amazing to give the world. But now all that was gone. I felt tired, old, and like my cells couldn’t grow or re-generate.
Post – LEEP Side Effects Ignored
I returned to my doctor straight away. But was told to wait. After six months I returned again and persuaded them I wanted a gynecology referral. This however also did not provide any explanation or acknowledgement of the changes in sexual or sensory function I had complained about.
This became the beginning of the nightmare cycle of denial, rejection, and disbelief, which made me realize there was something very wrong in the system that needed addressing.
I went back, time after time, in the hope that there might be some kind of seed of understanding or explanation or support, but I was left searching on my own for many years that pushed me into a deep despair.
I felt like it was neither accepted, talked about, nor considered a medical issue. There was no interest or understanding.
A Culture of Silence in Women’s Sexual Health
There is a culture of silence about women’s sexual health that has shocked me. There are many I have spoken to who have found it so hard to understand why any of this matters, or are too embarrassed, or think that this it is just about the act of having sex, but it isn’t.
The womb, and the vagina-brain connection is a sensory organ, a barometer for so many of our emotions and sensations. From fear, to passion, love, excitement, trust, feeling, hearing music, and of course drive, attraction and sex. If it is damaged, the effects span throughout your whole life and can affect your entire sense of perception.
My Symptoms Are Not Unique
I eventually discovered that the symptoms I was experiencing were not unique to me, and were not, as I had begun to accept, a form of madness that needed desperately to be concealed.
They were not only real, but well documented, and not uncommon in women who have undergone total hysterectomy. The removal of not only the womb but the cervix as well.
Although no doctor had at any stage revealed this to me.
I chilled further when I learned that practitioners now commonly avoid the cervix in order to preserve a woman’s health, sanity, and sexuality.
It seemed unbelievable that they could they be still cutting away at it, seemingly at random in other operations. Young women. Potentially being completely shut down. Without any warning of the statistics, or what is at stake.
How was it they were not making the obvious connection and trying to keep us safe and intact too?
Since this happened, the shame of having lost that sacred sense of feminine, seemed to lurk around every social interaction.
I could no longer get excited about the prospect of a social event, in my neutered state I was no longer a player in the game, or felt of value to anyone.
I felt unarmed, vulnerable and an outsider.
I could no longer command, or desire attention through that unspoken physical energy. An instinctive movement of my hips, or a raised head or glance through a crowd was a lost language. Direct eye contact confused me. I no longer could read or translate these bodies.
Having always known instinctively, and successfully, how to use my body to communicate and to express and perform, meant I now had become terrified of bumping into old friends or having to explain anything.
I felt like I had been hit round the head and had forgotten who I was. For a long time the shame of this affected my entire existence. Something that I have learned every day to try and fight with all the strength I have.
Recovery Post LEEP
At times I think I am getting better, tolerating my body in a new way, and thinking that I have created this whole thing in my mind. But then at other times I am floored again upon realizing it is real.
I am not sure of the facts about neurological re-growth or brain plasticity to heal. But I know this is a good start for a positive outlook. Or perhaps just after such a long time the hope that I will eventually just get used to living in a different mind and body. Learning new ways to live, feel, and accept what I have.
We Are Not Alone
It was such a relief to learn I was not alone out there. I finally found others, and medical practitioners who were also as passionate about this subject as me.
I found within some medical papers online, the names of neurologists specializing in the field of sexual health, and in my search I soon became a point of contact for their work.
This has become the beginning of the collaborative effort to bring this out of the shadows, and into a period of new research, progress and change.
The science behind this could take many years, however this collaboration is making steps that could protect many women from surgical damage in the future.
The threat of cervical cancer is something that must not ever be ignored. We all need to know the facts, but there are less invasive treatments. We need to be given a choice and made aware of the risks.
I have decided to write about my experience in the hope that, whatever the true neurological explanation, our experiences as women will eventually be taken seriously by the medical industry.
We need more women to support us, and we want to help bring this from online to the real world where these issues can be addressed.
More Information about LEEP Side Effects
For more information about problems with LEEP, Cone Biopsy, TVT/Transvaginal Mesh, Labiaplasty or a similar vaginal or pelvic surgery, I found the physicians and researchers at San Diego Sexual Medicine to be very helpful, in particular Dr. Irwin Goldstein.
Web and Reading Resources that Provided Solace and Support
Vagina, by Naomi Wolf
The Science of Orgasm, by Barry R Komisaruk, Carlos Beyer-Flores, Beverley Whipple
The Brain that Changes Itself, by Norman Doidge