by Sarah Hughes
It was Christmas Eve and I had way more exciting things to be getting on with than sitting in a hospital waiting room. Any moment now a nurse would read out my name and I’d be called in for my internal exam, feet in the stirrups and hopefully a small enough speculum that I wouldn’t feel like screaming. The panic river that had been promising to burst it’s banks for the past three weeks was rising by the minute.
I really didn’t want to hear I had ovarian cancer on Christmas Eve. Or in fact ever.
As my heart pounded in my chest I messaged one of the very few people who knew I was there; my friend Siri.
“You’re Ok.” She messaged back. “Take a deep breath and feel your feet on the ground.”
To give you some background, I had been suffering with increasingly heavy and painful periods for the past nine months. They were lasting for eight to ten days and the first few days I was losing so much blood I just felt completely exhausted. My kids (three pre-teen boys who aren’t usually the most insightful!) had even started to realise when my period was here. I would catch sight of myself and get a shock. My skin was grey and my whole face looked as drained as I felt.
After some preliminary appointments with a really fantastic GP (young, male - not what I would’ve requested if I’m honest) and then some tests which revealed an ovarian cyst, I’d been referred to the specialist. And the name of the referral was something along the lines of “The Two Week Urgent Cancer Referral Service”.
I was terrified.
I obviously did the worst thing I could’ve done and googled like crazy. Reading four years out-of-date threads on Cancer Research UK’s website and convincing myself I was going to be told the worst. What followed was three weeks of sleepless nights, loss of appetite and anxiety-induced nausea.
Anyway, back to Christmas Eve and my less than festive engagement.
I was seen by another brilliant young male doctor who spent an hour with me, allaying my fears and laying out the plan ahead, making it clear that cancer was just one very unlikely outcome amongst a myriad of other diagnoses it was more likely to be.
Endometriosis, Polycystic ovaries, Uterine fibroids, Menstrual disorders, Hormonal imbalances, the dreaded perimenopause…
I was reassured to hear the doctor say that quite often raised hormone levels and cysts can resolve themselves without any intervention; why hadn’t I known that before?
Shall I tell you why I hadn’t known..?
Because instead of actually talking to my network of wonderful, trusted girlfriends, asking if they’d had any experience of this… I went to Google and allowed myself to be scared silly by horror stories of faceless, nameless women I’ve never even met . The couple of real-life people who I did tell, I had sworn to secrecy.
A few days later, in that lovely lull between Christmas and New Year, where nobody knows what day it is; I met up with four of the school Mums to head out for a catch up.
In that relaxed festive bubble, my relief spilled over and I told the girls how stressful the last month had been. To my surprise, each of the four had the exact same two reactions:
1) Why didn’t you tell us!? We could’ve helped you!
2) I’m also waiting for a scan/hospital appointment/procedure for a gynae problem!
I could not believe that I’d been stressing and suffering in silence when four of my friends, who live so close to me and who I’ve shared so much with over the years, were all going through the same thing, yet none of us had wanted to say anything.
“This is crazy!” we said to each other over and over.
The thing is, the fact that all five of us had some form of gynaecological problem isn’t actually all that crazy. Endometriosis alone affects 1 in 10 UK women, ovarian cysts are incredibly common, especially in pre-menopausal women, and fibroids are even more common, with the NHS website stating that 1 in 3 women will develop them in their lifetime.
These conditions and more lead to women grappling with an array of pretty depressing symptoms including heavy, painful periods, abdominal pain, bloating, lower back pain, frequent urination and pain during sex. And although thankfully, reports show that we are becoming more comfortable, as women, to head to our doctor for advice, ensuring we get early intervention and treatment… what we’re not good at is having an open conversation with our friends about what is going on ‘down there’.
I mean, to give you an example; I once had a coldsore which was spreading out of control. I photographed said coldsore and sent it to loads of my friends (aren’t they lucky!?) to get advice. Had anybody experienced a runaway coldsore before? What were the best medications over the counter? Should I see a doctor? Would it leave a scar?
My friends rushed in with sympathy, (although some just said “Eeeewwww Sarah!”) sage advice and their best coldsore hacks. I felt instantly better that a fair few had had a coldsore on their chin (yes it was on my chin) before and had managed to get rid of it without developing an entire herpes beard.
So why didn’t I do something similar about my gynae issues? Why are they still a taboo subject?
After chatting to my friends that night in December, I realised there were a few reasons why we had all kept schtum.
1) Gynaecological problems are not sexy - we all admitted we felt we should just stick to more interesting, fun, attractive topics. Add to this that lots of gynae problems are linked to the menopause and we can see a bigger picture. Menopausal problems can make us feel old and boring - and in an age where being youthful is so highly valued; maybe we’re trying to avoid admitting we’re suffering from menopausal symptoms.
2) We don’t like to make people squeamish talking about procedures - this one in particular stops us having honest conversations about things like the coil. We know just how excruciating that procedure can be for lots of women, but there still seems to be a level of shame attached to talking about smears, coils, speculums et al.
3) Sometimes it’s cultural. And by that I don’t mean linked to a certain country or race. The culture of our own family might have been one of silence. Of not being rude. Of not talking about genitals or anything ‘unladylike’. This is bound to have an effect on our ability to talk openly about these issues as an adult.
So how can we break the silence around these health issues which can have such a huge impact, and be a massive source of stress for millions of women around the world?
Well, firstly, we need to make a commitment to other women that honesty is the best policy. By us opening up to our friends and family, including men, we normalise these issues.We have a duty not to shroud our gynae problems in secrecy, not to be embarrassed by them but to acknowledge that they’re a completely normal part of life. Just as we know the importance of openness and honesty regarding mental health, we need to throw away the shame when it comes to talking about our gynaecological health.
Secondly, we need to find and understand our ‘why?’ Why is that openness and honesty so vital? Well, when you consider the statistics around screening programmes it’s very clear that early intervention is absolutely key when it comes to saving women from cancers such as cervical and ovarian. There’s no better reason to be talking about this stuff than the thought that it might help prevent someone having a later diagnosis.
Thirdly, we need to set a better example to younger generations about taking ownership of their own health. To know what’s normal, when to get checked, how to talk about everything from periods to sexual intercourse to what to call our body parts! I’m determined that my three sons will be the type of men who understand how difficult periods and all that come hand-in-hand with them are.
In 2022, the days of not-to-be-talked-about ‘women’s problems’ should be a thing of the past.