I am a chronic oversharer. Sometimes this is good, but online I am very anxious about what I share and where I share it. Cyber-awareness is really, really important. The internet is such a great tool for sharing thoughts and ideas, and over the last few years I have really enjoyed blogging – but I’m always very careful to keep it relatively impersonal by writing about marathon training, my year abroad or, currently, reading. I’ve restricted my blogs with tight boundaries in the hopes of stopping myself from falling into the temptation of revealing too much about my personal life.
But blogging is personal. I’ve written journals on and off since I was eleven and consistently since I was sixteen, but there comes a point when you want to share some of those thoughts and ideas. Some of the best blogs I’ve read have been born from the writer finding solace in a difficult situation by writing about it – a tale as old as time, right? One of my favourite examples being my dad’s brilliant cancer blog: Man vs Breast Cancer.
For a couple of years now, I have been dealing with issues with my reproductive health. As we know there remain dozens of various stigmas and taboos around the subject of periods and female sexuality that would justify my silence over the subject, besides, for many people who menstruate, it is a very personal thing. But the other problem, perhaps the most difficult, is knowing when you’re making a fuss about nothing. Periods hurt, periods aren’t always pleasant, sex isn’t always good, pain is subjective and human bodies are not intelligently designed, they are flawed.
According to a study from January 2017, painful sex is reported by 7.5% of women in Britain, and is linked to ‘poorer sexual, physical, relational and mental health’. Painful and heavy periods are also a common complaint among women all over the world – how and why is my pain any different? Is it?
I’ve been in cahoots with my doctor about period, sex, post-sex and general everyday abdominal pain for nine months. I had, of course, diagnosed myself with several things on the internet; polycystic ovaries, fibroids, endometriosis, etc. Luckily, my GP has been brilliant. We swiftly ruled out polycystic ovaries, fibroids have never been mentioned, but the word ‘endometriosis’ kept being thrown about. My *sometimes* retroverted uterus added to suspicions and so I began the wait to see a gynaecologist. An ultrasound and a couple of pelvic exams (they’re a treat, aren’t they?) later and I’ve been on the waiting list for a diagnostic laparoscopy (keyhole surgery) for four months now.
My doctors have both made it very clear to me; it sounds like it’s endometriosis – but there is a very high chance that it is not. The gynae also made it pretty clear that if it isn’t endometriosis then there’s not really *anything* else it could be. This had a huge influence in my decision not write publicly about it.
There are two problems with this choice of inaction. On average it takes 7.5 years for someone to be diagnosed with endometriosis. I can’t keep my mouth shut for that long, are you mad? I don’t want to write about it after the fact, because after the fact might not be for a long time. I want to write about it while it is happening. The other problem is that if I don’t have endometriosis, it might be the end of the story for my doctor – but what about me? Just because in a couple of months someone might say to me ‘good news, it’s not endo’ does not mean that any of my pain, that has increased week-on-week for the last year, is going to stop.
There is a hole in research about the female body, female reproductive health and female sexuality. This hole in the research is something which really interests me, and I see it undoubtedly occupying many of my writing ventures over the coming years. My fascination with the subject has wormed its way into every aspect of my writing recently, in almost every academic essay, its presence in my creative writing and as a theme throughout the books I’ve been blogging about on Fictitiously Hilary. I worry about what happens when we give young girls very little information about what is and isn’t normal about menstruation and sex, especially when our understanding of it remains limited.
I don’t want to just document my experience, but I want to be involved in normalising conversations about the most intimate aspects of our bodies and our relationships and how the two are inherently connected. Until I manage to land a job that allows me to do this full time, for now I would love to occasionally use the platform of this blog to discuss what change is needed and how we can bring it about.
Whatever happens when I have the diagnostic surgery, it is not going to be the end, it is more likely to open up one of two outcomes. Option one: how serious the endometriosis is, whether it’s a quick fix or a more complicated process. Option two: what the hell is wrong with my body then, because something ain’t right.
Periods should not be debilitating and sex should not have to hurt. These are two things that I am dealing with at the moment and I can’t not talk about it – it’s important. It’s important because I know I’m not the only one.
The App Clue is something that has undeniably helped me get as far as I have with my ‘diagnosis’ but having recently become a Clue Ambassador I am increasingly aware, thanks to the stories of other ambassadors, about the alarming levels of pain and discomfort people with uteruses are putting up with and have been putting up with since the dawn of time.
I am nervous about sharing this, because I can’t shake the guilt that I might be making a fuss over nothing when others are really suffering. But at the same time, I am so fascinated and excited by what should be a revolutionary couple of decades in the understanding of female health, that I cannot turn my head and I cannot put my pen down. Trusting your body when it tells you that something is wrong is really important. Given how little we understand the female body, it is perfectly possible that people with uteruses who are turned away by doctors are suffering from conditions that haven’t yet been discovered. But the funding won’t go to the relevant research until we start having conversations about what is happening behind bathroom and bedroom doors.
One thing I’ve discovered over the last year is that when you start talking about your concerns about your reproductive and sexual health, others start sharing their experiences. Sometimes this reassures you that you’re ‘normal’, other times it brings out other issues that you are flabbergasted no one is talking about. There are obviously people that really do not want to talk about it, and that’s OK, but for those of us that do – let’s crack on.
I have essays and journal entries with all the nitty gritty details about my experiences so far that I would be willing to share. For now though, this post is just to test the water, to gauge the reaction, to see how many times I’m called hysterical or scolded for TMI. Or, alternatively, whether there is indeed a conversation here to be had.
Please, if you’re interested in more blogs like this or on this subject, don’t be shy.
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