Seeing Red

Red is a powerful colour: for blood, for passion, for anger, for strength. It’s bold and unashamed.

Over the past twelve months I have been on somewhat of a journey of self-discovery. Not through meditation and reflection, but through pain and tears – and blood. Not only do I now understand more of my body than ever before, I also am aware of how much I still don’t understand. More than that though, I have also begun to unpick mindsets and anxieties that I never realised stemmed from a very similar place.

I’m talking about the female body. Periods. Pain. Sex. Subjects that I am as guilty as anyone at having previously shied away from discussing publicly, but which I now staunchly believe are made worse through their silence. If you don’t feel comfortable hearing about candid experiences… then I recommend you keep reading.

Blood

I started my period around 11 years old. I remember it vividly – in a shopping centre with my mum one Saturday, having felt a bit unwell, going to the toilet and being appalled to see blood in my pants. Coming out of the stall in tears, for mum to smile knowingly, usher me into a disabled toilet and help me get cleaned up for what the first time ahead of many long and bloody years.

From the word go, my periods were really heavy. I was diagnosed with menorrhagia (heavy periods) in 2004 just before my 12th birthday. The doctors’ solution was a pill to take 3 times a day during my period to reduce the flow. This pill was an inch-long oval, yellow, and horrible. After years of taking it, my body started to react against it with severe nausea – solved by anti-sickness pills to take at the same time. My periods tended to last around 8 long days, with an average cycle length of 32 days. For most of my teens I was taking up to half a dozen pills a day, 8 days a month, 12 months a year.

Initially too scared and unfamiliar with my body to use tampons, it was maxi-pads all the way – going through several a day, regularly soaking through my school tights onto plastic chairs. I became adept at swiping the seat after standing up. Wearing long vests to hide the tell-tale stain just visible on my jeans. The embarrassment of being told by a friend’s mum that I’d leaked onto the leather car seat at the start of a weekend away tarnished what should have been 3 carefree days with my best friends with a sense of shame and anxiety.

At no point did anyone try to find out why my periods were so heavy. Before puberty, I suffered from what was vaguely called ‘Abdominal Pain of Childhood’, which was essentially constipation so bad I would be doubled over unable to walk around the aquarium – at the age of 7. Despite ultrasounds and MRIs, there was no understanding of cause or why my digestive system wasn’t working properly, and again I was simply medicated with a disgusting dispersible powder that ruined summer fruits squash for me forever. It’s only now, 20 years later I’m starting to see possible links of what could have caused it all.

As I got older, things started to ease – I’d stopped taking the medication to reduce flow as it just wasn’t working any more, and I was more comfortable with tampons which helped manage everything on a day to day basis, and feel a bit less embarrassed. When I was 16, I asked the doctor for norethisterone to delay my period so I could enjoy a holiday with friends. Once I came off it after 10 days, it seemed to kick my body into some semblance of ‘textbook’ periods – they were more predictable, marginally less heavy and overall, more manageable. I still had regular waves of nausea that would roll on for weeks, eased a little by finding a taste for peppermint tea.

Through all of this, there was the inevitable tag-along of becoming a teenager – sub-par sex education classes at school, the beginnings of flirtation, starting to understand who and what boys were.

Sex

I grew up in a Christian household, and abstinence was a part of that culture, so for me it was black and white – not married equals no sex. I decided around the age of 14 that I wanted to wear a purity ring to express that commitment, and I spoke to my friends about it. At the time, I told myself I genuinely believed it was best, and I was happy with my decision. It was clear cut and easy to follow.

Towards my later teens, I drifted away from any particular belief system as I began to uncover who I really was deep down. It was only through that space that I acknowledge the fear that I had been hiding all this time around sex – the classic Mean Girls quote ‘if you have sex you will get pregnant and you will die’ lodged in my mind somewhere but was exacerbated by the teachings of the church. As a girl, the focus wasn’t on what sex can mean in a relationship, only what the consequences are if you’re not careful.

In school, we were taught to put a condom on a banana, not how to understand whether we were emotionally ready for physical intimacy. I had a recollection of a church youth camp where the girls were gathered together and advised not to wear bikinis so the boys didn’t have ‘unpure thoughts’ – whilst those same boys swanned around in board shorts bearing their teenage six-packs. We girls used to giggle about it, feeling both thrilled and scared about the way we couldn’t stop staring at their low-slung waistlines. I was made to feel – directly and indirectly – that female desire was shameful, confused by the first pangs of lust whilst being acutely aware that I shouldn’t encourage those thoughts about myself.

The rebellion I felt when I tentatively started letting boyfriends do more than hold my hand was coupled with a crippling fear of what they may expect and what I might have to refuse. I’m fairly confident at least one of those past relationships ended due to my unwillingness to sleep with them; I was always on edge, and whilst I was never called frigid to my face I’m pretty sure that was the word around the school corridors.

Fast forward to being 21, in a solid relationship, moving in together. I’d been upfront with Simon before we started dating that I was a no-sex-before-marriage person (read: lies, just scared), so there wasn’t that same pressure. He was completely accepting, if a little surprised, but never once grew impatient or frustrated, questioned my decisions, or tried to persuade me to do anything I didn’t want to.

After a year of living together, I consciously acknowledged that my virginity was down to fear and insecurity, rather than a moral standpoint on abstinence. I finally mentioned it to my mum – a conversation we’d never really had before but probably should have – and she admitted that she’d known all along that I’d been scared more than anything else. Whether it was society, personality, or religion that stopped us having those honest conversations a lot earlier, I’m not sure. But either way, a huge amount of trial could have been avoided through simple openness.

I went to the doctor and got a prescription for the mini-pill (migraines meaning I couldn’t take anything more). Knowing it’d take a few weeks for the hormones to settle, I waited for what I hoped would be the joy of fewer or lighter periods – or, miracle of miracles, no periods at all. What followed was a year of complete physical upheaval. Periods lasting 3 weeks. Gaps of 5 weeks, just long enough to convince me I was pregnant. Stabbing pain in my sides the doctor said was probably benign ovarian cysts and nothing to worry about.

Yes, I discovered sex. Yes, most of the time it was pretty good. But it was traumatic to get there. Eventually I threw in the towel with the pill, and said enough was enough when it came to hormones, letting my body get back to its normal rhythms.

Shifting contraceptive methods gave me back a sense of ownership of my own body and my hormones readjusted again. Yet I still couldn’t quite accept that I could uncover what I really wanted, what felt best for me when it came to intimacy. Female desire remained a squeamish thought – the idea of being ‘sexy’ made me cringe, and any attempt to be the seductress left me feeling awkward as I tried to undo years of preconceptions.

As time went on, sex became increasingly painful physically, with no apparent cause or consistency. Stabbing pains in my sides that sometimes made me gasp in the completely wrong way. With no frame of reference of what was ‘normal’, and with no-one to really talk about it with, I either put on a brave face to get through it, or started to make excuses.

What I didn’t realise was the psychological impact this was all having on my confidence and libido. I decided maybe I just wasn’t wired that way, and it was normal to not think about sex that often – it became easy for me to just ignore it and push it away, which was both unfair on Simon and began reinforcing my own insecurities.

Pain

On the one hand, you could say I’m lucky. My periods growing up were heavy and accompanied with intense nausea, but I rarely experienced cramps. The severe abdominal pain I’d gone through had been before puberty, and had been such searing agony that my pain threshold was arguably quite high so most niggles were easy to ignore.

The pain I did get was that deep, dragging ache through the base of the pelvis and down the legs, that I know a lot of women will relate to. When I was at university working as a climbing instructor, I’d dread the days of my cycle when I was working as I knew I’d be on my feet all day, desperate to sit down as the only real feeling of relief.

Instead, I got what I described as ovulation pain. A week or two after my period ended, I’d have a sharp, twisting, stabbing pain low on my abdomen that wouldn’t ever be touched by pain killers, and would last for around a day. As mentioned above, the doctor suggested this may be cysts, which are completely normal and typically go away on their own. I had an ultrasound but nothing showed up, so I was advised it would all be okay.

The pain during sex I didn’t ever mention, finding it both embarrassing and assuming I was doing something wrong.

Alongside abdominal or ovarian pain, I’ve had issues with back pain for years too. Slipping a disc aged 21 when climbing resulted in 5 years of on and off issues, spasms, until eventually I hammered on the door of the village physio and started to find ways to improve my posture, strength, and rebuild weaknesses I’d been neglecting for a long time. By and large I became pain-free, with a flare up a couple of years ago leaving me with lower back pain that only occurred at night. Adjusting my running and being more conscious in the way I moved in daily life seemed to ease, and since then I’ve had virtually no issues.

Yet in March/April 2020, shortly after the first lockdown started, I was crippled with the most agonising pain of my life, so extreme Simon desperately tried to get an ambulance out to me. And thus began what has been 11 months of discovery.

I’m extremely grateful to the first doctor I spoke to at my local surgery, who from the very first moment took me seriously and pushed for tests. Suspecting simple ovarian cysts, she referred me for an ultrasound. Whilst still waiting for an appointment a few weeks later, I had a further bout of agonising pain – a further call to the GP and she’d pushed me through to an emergency clinic at the hospital. An external and internal ultrasound later, there was the first mention of the ‘E’ word, but in such an offhand way I didn’t really notice it – one thing was for sure, that I had a 5cm cyst on one ovary.

After 3 blood tests in 3 days – which ruled out ectopic pregnancy and thankfully cancer (after some concern over a particular elevation), I was referred for an MRI. Lying in that metal tube for 45 minutes, I still wasn’t sure what to expect. The follow-up call with the gynaecologist to discussed the results confirmed it – the cyst was endometriotic, filled with blood and the likely cause of the extreme pain I’d been experiencing. With a cyst of this size, the recommendation was surgery and I was put on the list. This being the summer of 2020, the optimism was that I’d be seen by the autumn, though we all know that come September Covid figures were rising.

It is only since that recent experience that I’ve become conscious of endometriosis, and how complex and misunderstood it is. The research I’ve been doing has opened my eyes to a host of symptoms I only know too well:

  • Extremely heavy periods
  • Nausea
  • Back pain
  • A tendency for headaches and migraines
  • Pain during sex
  • Pain around ovulation

For me, the majority of symptoms have been minor enough that I’ve ignored them, chalking them up to ‘one of those things’ and just carrying on. Whilst I’m fortunate in that my daily life has been largely unaffected, this does not belittle my experience or negate the need for intervention and education. Something I‘ve had to get my own head around – falling regularly into that ‘ignorance is bliss’ state of mind, and having to remind myself that knowledge is power.

Reality

On the 18th March 2021, I sat in a hospital ward awaiting the call to theatre. Having never had surgery before, I was nervous and unsure what the experience would be like. And yet for the hours I sat waiting, I spoke with other women in the ward – two being post-op, one also awaiting her procedure. All had gynae tales to tell, the other lady waiting having already been diagnosed with Stage IV endo and now facing likely infertility in her late-30s having taken too long to get treated.

Speaking to these women gave me reassurance, but also a sense of camaraderie. We all knew the unique pleasure and pain of being a woman. Shared experiences and tips on handling different sensations, gave advice on what we found worked best for various conditions. This sisterhood – of women, but also of women with gynaecological complexities – helped me feel calm when it was my turn to go under the knife.

I’d been told in December, when calling the hospital, that they had no clearer idea of when I’d be seen for my surgery. In early January, following 48hrs of painful cramps, I’d called the GP to ask for better pain meds, at which point he was very concerned that I’d not yet been seen. He contacted the hospital himself and whilst they agreed to put me on a priority list, there was still no guarantee I’d be seen by the end of spring.

It was out of the blue on a Friday afternoon that I got the call asking me to self-isolate for 2 weeks to prepare for surgery. What I’d been starting to believe was never going to happen suddenly came screaming back into reality – and quickly. I’d convinced myself that I didn’t need the procedure, whilst friends and family told me that if the doctors said I did, then that was that. I spent the few short weeks speaking to old schoolmates who’d gone through their own endo journeys getting advice, reading up about the procedure and trying to calm my nerves.

All I knew was it was to be a laparoscopic ovarian cystectomy – medical speak for a keyhole procedure to remove the cyst. While they were in there, they were going to have a look around and excise any other endometrial tissue they found. The gynaecologist had suggested that he expected to find deep seated tissue, whilst the MRI assessor had said there was nothing to find. So, it was anyone’s guess – for all intents and purposes, and from the research I’d done, I was expecting to be under for an hour or two. A few days of bloating discomfort would follow as they pump the abdomen with gas to provide more space, and I’d be on my feet before long.

When I woke up in recovery, the first thing I asked was the time. It turned out I’d been in surgery for around 3 ½ hours – long enough that my husband had phoned the hospital concerned that he hadn’t heard from me yet, the surgery having taken twice as long as anyone had suggested.

They’d removed the large cyst, along with a fibroid on the other ovary. They’d found endometriosis elsewhere: on my uterosacral ligaments (possibly reason for my many years of back pain). On the ovaries. In the Pouch of Douglas, which is the most likely cause of the painful sex – officially ‘deep seated’ endometriosis. The doctor debriefing me in my groggy state confirmed that these instances meant I had Stage II of the condition.

Given the time I’d woken up – about 7pm – the decision was to keep in hospital overnight, something I was extremely grateful for. A paracetamol IV kept me pain-free, but I was unable to stand by myself, not least due to the weakness of not having eaten since 7am on the morning of the surgery.

Hope

I’m now 4 months post-op. The first week was really tough – I had little pain thanks to regular doses of painkillers, but I was so unused to my body feeling incapable. The bloating from the gases they’d pumped me with made me feel uncomfortable, and my belly protruded as though I was 6 months pregnant. I didn’t recognise how I felt or looked, and spent the week moving sluggishly from one sofa to the other, flitting between reading and binge-watching box sets for the first time in my life.

After 4 days we attempted a walk outside, to get some fresh air and try to increase mobility. 400m took 15minutes – a far cry from the 5km PB runs I’d been knocking out in the days before surgery. But, as always, recovery was happening, and slowly the movement came back along with the energy.

After 10 days, I started a tentative return to work, physically feeling better but not realising the mental toll. I’d experienced a mild depression for a few days – apparently not uncommon particularly after gynaecological surgeries – and found my brain getting fatigued extremely quickly. Thankfully an incredible team meant I had small, non-urgent projects to work through from my desk or sofa, whichever I needed, to distract me and feel at least a little productive.

It was at some point during this second week that I realised I was now actually pain-free. Not just in terms of post-op, but also recognising that irritating, niggling pain I’d had for years had disappeared. The first true sign of the success of the surgery.

The portal wounds have been healed well – having been glued rather than stitched, there have been no dressings to deal with and the scars are looking thinner as every day goes by.

With every week of recovery, I’ve got stronger. Starting with gentle bikerides before I could run again, I got back in the saddle and rediscovered the joy of a ride through Cheshire countryside. Slowly, and with little patience, I’ve got my running going again, and am back to pre-op paces. My swimming has gone from strength to strength, and I’m getting my speed up with every pool session. I successfully completed the 1 mile course of The Great North Swim in mid-June, my first event of the year and confirming that I’m back to full strength and fitness. With a triathlon booked at the end of July and more swim and run races planned in, there’s no stopping me.

It took a while for me to feel ready for intimacy again – so nervous about the pre-op pain still being there, in which case the surgery won’t have fixed everything, but also still battling my own demons around my sensuality. I’ll keep this bit brief: it worked, it was pain free, it was (is… will be again many times…) good.

I’m now looking forward to a body that doesn’t hurt – for however long that lasts. I’m hesitant to take the hormonal suppressants (i.e. the pill) that is recommended to keep endometriosis from growing back to the same extent due to my migraines, so I’m willing to just see how things go. I’ve had basically no aftercare advice so far, but have a call in September where I want to find out how big the cyst was when it was removed, whether it was fast-growing, the likelihood of reoccurrence – and when should my pain threshold become a sign that I need to go back.

I’ve also been using a menstrual cup for the last year, which after the first squeamish attempts has genuinely changed my experiences of my periods and my body. I have to engage with myself in order to use them, and being able to monitor what my body is doing throughout my cycle has only brought a greater sense of ownership over myself.

This might be it, and I may never suffer again. Or I could be back in theatre in a few years. Regardless, I feel myself again and once more am in control of my own body – and mind.

If you’ve got this far, thank you. I’ve not written this for sympathy, to place blame, or make a scene. But a huge amount of the anxiety I’ve talked about was due to a lack of honest conversation and proper education. So I hope that this offers just a little comfort to anyone else going through similar experiences, be they big or small, that you can regain control and feel at home in your own skin.


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