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With one in three women developing a fibroid at some point in their lives, you’d think it’d be simple to have troublesome ones removed. Sadly, getting help can take years –  even when the symptoms are crippling, as writer Jessica Regan knows only too well.

A year ago, I felt a swelling in my middle. It was hard, bulging and it moved when I pressed on it. Was it my appendix? Was it my spleen? 

Prodding the lump, I went over the host of strange symptoms I’d experienced over the years: sudden and severe menstrual bleeding that could for last weeks at a time, ridiculously high prolactin (the breastfeeding hormone) levels (despite not being pregnant or breastfeeding) and going through the IUD fitting from hell.

I say this all began a year ago, but the truth is, an innocent coil fitting was the starting gun back in 2014. That procedure prompted my body to go into a kind of labour as it sought to evict the newly placed bit of copper from my womb. Rivers of perspiration drenched my cotton dress, making it stick to my skin as contractions seized my middle in a rhythm of agony. Too tender and stunned to probe what the hell had just happened, I crawled into a taxi, cursing every speedbump that painfully punctuated the drive home. 

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Two years later, I was performing in an outdoors production of Henry V – having the time of my life apart from the fact that my period had lasted almost the length of the entire production run. I went to my GP at the time, who refused to investigate the cause until I had a comprehensive STD test.

I complied – despite knowing that my symptoms weren’t those of any STD I’d come across. In fact, as soon as I managed to see a different GP, I was immediately referred for a transvaginal scan, which revealed one small fibroid. It was so small, in fact, that the experts around me refused to believe it could be the source of the bleeding.

A year-long wait and two appointments later, I still had no answers. Doctors continued to tell me things like: ‘We don’t really know why’ and that my symptoms ‘might go away on their own’. With swollen breasts and my blood full of breastfeeding hormones, I started to wonder if I was having a phantom pregnancy.

That might not sound very feminist of me, but I needed something to blame for the interminable periods that ruined sheets, dates and the odd couch – and months of having no period at all coupled with what felt like permanent PMS.  

After my worst and longest period yet, in 2021, I finally had another scan, which revealed two fibroids. 

The small one from 2016 wasn’t so innocent; its placement was the cause of my bleeding all this time. But that wasn’t what made the technician gasp – it was the 10cm free-floating beast filling the screen. My ‘phantom pregnancy’ notion hadn’t been too far off; this was the same size as a four-month-old foetus. A consultant marked my case as urgent and assured me it would be removed within two months.

But… that didn’t happen. There were tearful calls with overworked administrators as I explained that while it’s not cancer, it needed to come out ASAP. The big fibroid was twisting in and out of my organs while the smaller one produced levels of bleeding so severe that I felt incontinent at times, not wanting to leave the house in case of a bloody flash flood.  

I’m one of the lucky ones, though. Thanks to the resources and support I had access to, I was able toplead and persist, to stay on hold and call back time and time again. But I got my surgery date in the end, and the fabulous Gina from admissions hasn’t had to hear from me again.

When my brilliant surgeon came to speak to me after the procedure (a laparoscopic morcellation), she informed me that my lemon fibroid was in fact an extremely dense mass – bigger than my uterus (which remains intact, a huge blessing given the risk of hysterectomy that comes with this operation) – that took hours to break-up. “It had its own supply vessels,” she said darkly, sore-armed but triumphant.

Life after surgery: advice for women living with debilitating fibroids

Now, I can’t stop reaching down and touching my stomach, feeling its absence. I am so grateful for the care I received and so sad that there is so little awareness of the disruption fibroids can cause our systems. 

So many people have one or two fibroids which are totally harmless, but some of us do live with devastating symptoms that are life quality-limiting. Everyone did their best to help me, but our healthcare system is under-resourced and overwhelmed. 

My advice to anyone else going through this kind of bloody hell? Be steadfast, ask questions and don’t ever think that because you’re coping, you’re somehow not “suffering” enough to advocate fiercely for yourself. 

Images: Getty

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