I want to write about something that has occupied every space in my mind for months, but began ten or so years ago.
Before I begin, a quick trigger warning; what follows is a discussion of reproductive health issues, fertility, health procedures, sexual assault and rape. It wont be an easy read, and it certainly hasn’t been easy to write, but, I feel as though it’s a opportunity to open up a discussion about women’s health.
It all began with a collapse. I lay on the floor, clutching my abdomen in a pain I couldn’t describe. These types of pain were not unusual — far from it. I’d become familiar with pains throughout the month that I had attributed as little more than a side effect of the Mirena Coil I’d had put in a few years before.
For the first time though, I was truly scared. After a fraught phone call late at night to my mother it was decided that I should phone NHS 24 and see what could be done.
It took three hours for them to call back as promised, and in those three hours, the pain barely allowed me to move. Still scrunched up on the floor of my apartment, I spoke through sharp inhales of breath to a nurse who told me it was probably time to change my coil and that I would be okay.
An appointment was made with my doctor back home and following a small discussion, he agreed that we should remove my coil and that for the sake of regulating my menstrual cycle, I should go back on Rigevidion — the combined pill.
I should mention here that the coil was not my first attempt at trying to control a highly irregular cycle. I have tried pills, the implant and the coil, and for small periods of time, have had a level of success, but the side-effects eventually became unbearable.
For ten years I have struggled with irregular cycles; bleeding that lasts for 14 or more days in some cases, pains all through the moth — the sharp, debilitating kind that no painkiller seems to be able to dull, and for ten years I have told doctors that I believed something might be wrong. These worries were quickly discarded as little more than common side-effects of womanhood.
Following my conversation with the doctor, an appointment was made for the next day to have my coil removed by a nurse. The process was uncomfortable, to say the least, and she had decided to perform a smear test at the same time.
That’s when the waiting began.
The first few weeks were nerve racking, but in a way, exciting. I thought that maybe if they found something, they could finally help me. I’d become convinced that I had endometriosis — a treatable, but not curable condition, in which the tissue that normally lines the inside of your uterus, grows outside of it. While not the ideal scenario, and would mean a lifetime of managing a painful condition, it would provide answers.
After a long day, I sat down to talk to a friend when my phone rang. My mother was on the other end of the call. She struggled to tell me that the results were back, and they weren’t good; Abnormal cells had been detected and enclosed was an appointment for the colposcopy clinic.
No answers. More waiting. I couldn’t help but cry.
Part of me had hoped that they’d gotten it wrong; that the test was wrong and everything would be okay, but somewhere underneath it all, I knew this wasn’t the last of the bad news.
I waited, albeit anything but patiently, chewing my nails, crying sporadically, letting myself fall behind on even the most simple tasks as I obsessed over every possibility.
My mother came with me that day to the hospital. We sat nervously in the waiting room, no idea of what was to come. The doctor was harsh and patronising, making an already miserable situation even more uncomfortable with every pointed question and insinuation that this might somehow be my fault; a result of my lifestyle or lack of fruit.
She decided to perform a cervical punch biopsy; a procedure in which they stain your cervix with dye to make it easier to see any abnormal cells before they remove a small amount of tissue using biopsy forceps.
I can’t even begin to explain how humiliating and uncomfortable the process was. No pain relief. No pre-warning for something so personal and invasive, and little more comfort given than the promise of an email and letter which would explain what, if anything, was found.
I left the hospital that day terrified, embarrassed and in pain. My mood shifted from uncontrollable crying to a desperate need to break something and scream.
Four to six weeks, they said. The limbo of waiting continued, mercilessly.
I have lost track of how often I cried or lost my temper. How many times I was irrationally angry and acted unfairly towards those I care about. How often I chose to hide away alone instead of putting on the familiar mask of presentable okayness, simply to save myself the embarrassment of crying in front of others.
That’s when the results came back.
My mother called to tell me they were back — CIN3, not cancer.
No email ever came, and little explanation was given as to what the above meant, or the procedure that they had booked me in for on the 7th of June.
There was a small wave of relief, but an underlying feeling of uneasiness.
For everyone else the phrase “not cancer” was reason to celebrate; to forget the worries of the past few months but for me, I couldn’t shift the worry nor heaviness in the pit of my stomach.
What followed was more tears and obsessive research.
CIN3, also known as Carcinoma-in-Situ — Stage 0, non-invasive cancer.
CIN ranges in severity from 1 to 3, and is graded depending on how deep the cell changes go into the surface of the cervix.
Image credit: Cancer Research UK
CIN3 means that the full thickness of the surface layer is affected.
In situ means that the abnormal cells have remained in the place where they first formed, however, they are liable to become invasive cancer if left untreated and the cells develop in the deeper layers of the cervix.
Further research, or rather, obsessive trawling through cancer forums and medical websites, revealed that CIN is caused by the HPV infection.
As if everything before hadn’t been hard enough to process, I was now faced with the realization that whatever was wrong with me had been given to me by someone else.
HPV is carried by men and transmitted sexually, yet we vaccinate women when they come of age, and the vaccination does not protect against all strains of the infection. The responsibility lies with women not to catch the virus and to be vaccinated against it, yet there is no test which identifies the infection in the men who carry it — why do we continue to push the onus onto women while excusing men from any form of responsibility?
Writer’s note: I’ve been told that a trial vaccine for men has been rolled out across the UK, however, it is currently only being offered to gay and bisexual men. Other countries such as Australia and Canada have chosen to vaccinate all boys as there is a link between HPV and certain cancers pertaining to the head and neck where men are concerned. While the trial is a great step forward, i don’t doubt that we’ll see excuses made for why heterosexual men can’t be vaccinated. Perhaps that sounds cynical but the trial of and subsequent dropping of the male pill showed an unwillingness on the part of doctors to put men at risk of the same side-effects that women deal with regularly.
My year was one of the first to be given the HPV vaccine in school, but, by the time I was given the injection, it’s likely that I had already contracted the infection.
At the age of 13, I had been abused by an older boy at school; mentally, physically and sexually.
At the time, I wrestled with the inability to explain to anyone what was being done to me, and the fear that the violence I was living through would escalate if I tried to leave or asked for help.
I didn’t have the words to explain any of it, and it took me three years to break that silence and to admit, even to myself, what had been done to me.
I live with the repercussions of his violence every day, but I had started to make big steps towards recovery; my confidence was coming back, slowly. I had escaped the pattern of abusive relationships that I had become so accustomed to, and for the first time in years, I was starting to like myself again.
And now, here I am.
Struggling to accept that the repercussions of one man’s decision extend far beyond the initial and lingering damage; that all of the reproductive health issues I have had for ten years are the result of one man’s violent, selfish decision. That this one person took so much from me that I can never replace, and yet there’s still more to lose at the hands of his actions.
That one man may have stolen my chances of motherhood.
I am 23 years-old, and I am now facing the reality of both cancer, and a decision on fertility that I am far from ready to make.
Motherhood was never part of my plan, but I am now faced with the reality that, depending on the severity of the abnormalities and whether or not they recur, I may have that decision taken from me in the form of a hysterectomy, decreased fertility, or even increased risks during pregnancy as a result of procedures intended to save me.
I am exhausted, and I have never felt so hopeless and alone as I do now.
Every decision that needs made relies on the schedules and actions of others; I have very little autonomy and it’s a frustrating process.
My support networks exist in almost every city but the one I live in, and the nature of it makes it hard to discuss, but that’s exactly why I needed to write this. The support I do have is undeniably fantastic and I am so grateful to every single one of them for their unwavering support, but the hopelessness and loneliness that comes with all of this can’t be undone by hugs nor supportive words.
Looking through hundreds of pages of forums I found that my story is not, in any way, unique. The pain of women is so often overlooked and swept away under the convenient rug of undesirable side-effects of womanhood and the truth is that it is so dangerous to ignore women’s pain.
My doctor told me I was young to be going through all of this, and that struck a nerve. I noticed that the women posting in forums seemed to be at least three years older than me, and just as terrified — many saying that like me, their first smear had led them down a path of hopelessness and under-explained diagnosis’.
HPV is contracted by most women at some point in their lives, and while in some cases, it goes away of its own accord, in others, it spreads and causes a myriad of issues.
The lack of information given to me about not only what’s wrong with me, but what happens next, has highlighted an important issue; discussion about reproductive health is still not common place, and the complaints of women are too often dismissed. Information can be hard to find, and even harder still to interpret so we need to talk and share information when possible in order to better arm ourselves for situations like mine.
What’s wrong with me is highly treatable, and I think that’s perhaps where the severity of it becomes lost on others. Just because it isn’t invasive cancer doesn’t mean that everything is okay.
There are a number of different treatments for CIN3; Cone biopsies, Large loop excision of the transformation zone, Cold coagulation etc. And while it’s repeated that they are not necessarily painful, they do come with potential repercussions and the promise of four or so weeks of discomfort in the form of bleeding, discharge and period-like cramps, and, in some cases, increased chances of pre-term labour in future pregnancies or decreased fertility.
While knowing that it is treatable should be a comfort, what treatment I am to receive has not yet been told to me, and the anxiety of the procedure, recovery and potential long-term effects lingers like a boulder in my stomach.
If there’s one thing I wish for you to take away from all of this, it’s that it’s important listen to the women around you. Acknowledge their pain. And, if you are yourself, a woman, do not ignore your own pain; be persistent because you know your body well enough to know something isn’t right, and please, don’t avoid your smear tests because HPV does not discriminate. You are not too young to contract it and it’s imperative that it be found quickly and treated.
If you’re going through something similar, feel free to contact me. Or, if you have information or stories of your own that you would like to share and are looking for a platform to do so, my inbox is open.
As I write this, I know that my story is long from over. I still have a procedure to go through — the details of which no one has provided me with, and the reality of regular smear tests, and perhaps even more biopsies to contend with. Constant monitoring will be needed to make sure that it doesn’t recur nor develop further into invasive cancer.
There is no closure here.