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 gotten the better of me, yet 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 because of 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 — that builds up and sheds 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 911 call in the first week.
Besides endometriosis, there are many health problems that only women have. Learn more about them:
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, which is a condition that causes endometrial cells to grow in the uterine muscle wall. The first time my consultant mentioned a hysterectomy was a devastating blow. I was in torment for days. I wondered if our family was complete. But multiple operations and hormone treatments had offered little relief and my pain was constant. I was unable to carry out basic tasks, each step brought agony, which inevitably spilled over to those around me. The pain seared through my every fiber and left me unable to consume anything except Diet Coke and gummy bears.
Fifteen months later, daily life had become unbearably painful. You could almost set your watch to the weekly ambulance trips, where I’d be unable to speak because I was paralyzed 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 what if 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 in February, 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. This past month, a hospital registrar went through his checklist and exclaimed, “Right, so you can’t be pregnant as you have nowhere to grow a baby.” That day, I was in a good place mentally, but had he made the same comment a year earlier, I would’ve been in emotional despair. 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, I felt a sense of self alteration immediately after returning from the operating room. 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, people on social media have heavily criticized her. 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.
Two years later, I am more empowered by the surgery. My uterus, ovaries, and cervix were removed, as the doctors agreed the endometriosis might return if this wasn’t done. Recovery has been grueling and my immune system seems to still take constant knocks. The long painkiller withdrawal caused me exhaustion, shakes, anxiety and muscle aches. I’ve also suffered the grim reality of surgical menopause, which comes with hot flushes, insomnia, muscle aches, and night sweats. Plus, one type of hormone replacement therapy caused pain recurrence. However, I have to remember the person who I was before surgery: the days where I would lie in bed while everyone else lived. Now that 80 percent of my life now pain-free. I can now walk, run, and enjoy life. Life as a mom 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 because 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 it’s certainly not right for everyone. I only ask those who jump to make a quick judgement, just consider how heartbreakingly hard the decision to have a hysterectomy can be.
This post was written by Helen Wilson-Beevers. For more, check out our sister site Grazia.