Womb with a view

Like Lena Dunham, Helen Wilson-beevers opted to have surgery to tackle her crippling endometriosis

bundled into an ambulance for the second time that week, morphine barely even touching my agony, I knew I couldn’t take any more. Endometriosis had got the better of me again. I was 31 and it was time to have the hysterectomy I’d been putting off for years.

Lena Dunham recently revealed her own decision to have a hysterectomy at the same age, following her battle with endometriosis. It’s a condition with no cure, where tissue similar to the lining of the womb grows in other areas of the body – ovaries, bladder, bowel, diaphragm and even lungs – building up and shedding each month, but with no means of escape. Symptoms include pelvic pain, difficulty conceiving and heavy periods. It’s thought one in 10 women suffer from it.

I was diagnosed nine years after the onset of symptoms (bad cramps, heavy periods and exhaustion) and, by the time a hysterectomy was suggested, in my late-twenties, I was keeling over regularly and requiring emergency morphine. Every job I started ended with a sick note resignation, and one even began with a 999 call in the first week.

I was fortunate to conceive my two children fairly quickly, despite being told I might not be capable. Doctors say pregnancy can ease symptoms, but my pain worsened after the arrival of my youngest child and it was suspected I also had adenomyosis (a linked condition causing endometrial cells to grow in the uterine muscle wall). The first time my consultant mentioned the H word was a devastating blow. I was in torment for days. Was our family as complete as I’d thought? But multiple operations and hormone treatments had offered little relief; my pain was constant. I was unable to carry out basic tasks, and each step brought agony, the impact of which inevitably spilled over to those around me. The pain seared through my every fibre and left me unable to consume anything except Diet Coke and Haribos.

Fifteen months later, daily life had become unbearably painful. You could almost set your watch by the weekly ambulance trips, where I’d be unable to speak, paralysed by pain and fear. The lack of control was terrifying. How could I know where I would be when my painkillers – a combination of opiates – failed to touch the agony and my body would shake and crumple? What if my children were with me or I was driving? I felt I had no choice but to take the surgical option, however nuclear it seemed.

In her searingly honest piece published earlier this month, Lena reveals how she was asked whether she could be pregnant by a nurse who’d forgotten for a moment that she’d just had a hysterectomy. I can relate to this. Last month, a hospital registrar went through his checklist, exclaiming, ‘Right-o, so you can’t be pregnant as you have nowhere to grow a baby.’ That day, I was in a good place mentally – had he made the same comment a year earlier, I would’ve been in emotional despair. Because the operation has brought a new pain, a grief I find hard to describe. I have two children and am infinitely aware of how lucky I am. Yet still, my sense of self altered almost immediately after returning from the operating theatre. That day I lost part of me.

But as I came around following the operation, there was a new sensation in my body – lightness. It was as if a lead boulder had been removed from my pelvis.

Lena has said ‘a hysterectomy isn’t right for everyone’ and, since her announcement, criticism has been heaped on her via social media, while experts have lined up to claim a hysterectomy doesn’t cure endometriosis. I can only say that the desperation brought on by endless pain left me no other option.

Now, two years down the line, I am more empowered by the surgery. My uterus, ovaries and cervix were removed, as the doctors agreed the endometriosis may otherwise return. Recovery has been gruelling and my immune system seems to still take constant knocks. The long painkiller withdrawal brought with it exhaustion and shakes, anxiety and muscle aches – not forgetting the grim reality of surgical menopause, with hot flushes, insomnia, muscle aches and night sweats. Plus, one type of HRT caused pain recurrence. However, I have to remember the person who I was pre-surgery, those days where I lay in bed while everyone else lived. With 80% of my life now pain-free – marred only by the occasional niggle – I can now walk, run and enjoy life. Life as a mum is easier than before. Yes, parenting is a tough task. But the nights I spent sobbing for my very young babies from hospital beds or the chunks of their infancy I had to miss were almost as painful as the endometriosis itself.

Whether Lena chooses motherhood ( potentially through a surrogate, as she didn’t have her ovaries removed), or not, the issue here is that it’s her life, not anyone else’s. It is about her hope to live without pain.

When you’re in that unbearably intense, immensely debilitating place, endometriosis is cruel, heartless and without mercy. I was aware the hysterectomy was a risk, and certainly not right for everyone. I only ask those who jump to make a snap judgement, just consider how heartbreakingly hard the decision to have a hysterectomy can be.