Most people consider January the month for new beginnings but this year it was actually in April that I was due to enter a new phase in my life – one where there would be significantly less pain. I have uterine fibroids (benign growths in the womb) and endometriosis, meaning that I have been living with chronic pelvic pain and heavy bleeding for as long as I can remember.
Let’s rewind to the era now known as PC: pre-coronavirus. A few weeks into 2020 I met with a consultant who mapped out a series of appointments, including laparoscopic surgery to treat the gynaecological conditions that left me in agony and bleeding for up to three weeks every month. That surgery was scheduled for 30th April.
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And then coronavirus hit. In March, the NHS announced that all "non-urgent" surgery was cancelled while energy was channelled into our COVID-19 response. All of my medical plans began to disappear, along with the fragile optimism I’d allowed myself to feel that my condition might finally improve.
I became one of an untold number of women and people with wombs who saw treatment withdrawn that could preserve their fertility and change their quality of life.
The laparoscopic surgery I was due to have would remove the endometrial tissue causing me pain and my larger fibroids would be removed at the same time. There was, I had been told, an 80% chance I would feel the benefits of surgery within two weeks of discharge and be fully recovered within a month.
But as the coronavirus crisis unfolded in late March and hit its peak in April, I received frequent phone calls from the harassed-sounding booking office staff. They were apologising for the cancellation of my appointments. I politely acknowledged the postponements but didn’t allow myself to think of the long-term impact. However I was forced to confront it when my consultant called one sunny April morning.
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In March, the NHS announced that all 'non-urgent' surgery was cancelled while energy was channelled into our COVID-19 response. My medical plans began to disappear, along with the fragile optimism I'd allowed myself to feel that my condition might finally improve.
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When I met my consultant in the clinic at the start of the year, she was cold and detached so I was surprised by the warmth in her voice as she asked how I was doing. I told her I’d had a difficult few weeks – my fibroids and endometriosis felt like they were flaring up. In lockdown, my periods seemed longer and more painful and I was taking a cocktail of 14 tablets every day (a mixture of painkillers and anti-inflammatories) to manage my symptoms.
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"You’re calling to cancel my surgery, aren’t you?" I said, wanting to deal with the elephant in the room head-on.
"Yes, Catherine. But we also need to talk about the next steps."
I took a deep breath as she continued: "We can’t reschedule your appointments any time soon and by the time we get back on track, there is a real chance your fibroids and endometriosis will have continued to worsen, and radical surgery may be the only solution."
"You mean a hysterectomy?" I said, knowing that this meant losing both my womb and my cervix permanently.
"Yes, Catherine, a hysterectomy. I just wanted to give you time to prepare before we meet again."
As we said our goodbyes, I realised I was crying. I looked at my phone and noted that this life-changing call had been only six minutes long. It wasn’t the first time 'radical' surgery was mentioned but until this moment, the removal of my womb and cervix was always touted as a possibility that might occur years from now, in a far-off future when all other treatment options had been exhausted.
Now, as well as processing the pandemic, I was facing the very real prospect of undergoing a major operation with a significant recovery period, not to mention the emotional impact a hysterectomy would bring.
I’m in my 30s and I don’t feel ready to say goodbye to my womb. It felt selfish to cry over a cancelled surgery when so many were losing their lives in the pandemic but I had pinned all my hopes on that surgery date. It was a light at the end of the tunnel, a reason to keep going on days when I struggled even to get out of bed with the pain. In the days following that call, I sunk into a deep depression.
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As we said our goodbyes, I realised I was crying. I looked at my phone and noted that this life-changing call had been only six minutes long.
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Unsure of where to seek support, I turned to the same online support groups for people living with gynaecological issues which had given me the courage to challenge my GP when my symptoms were dismissed for more than two years. Friendships were forged through a shared desire to have our pain taken seriously. We celebrated triumphs and consoled one another through tragedies. Bonds had strengthened offline, too. I found that I was not the only one who was being devastated by cancelled surgeries and appointments.
Sophia, 32, has struggled with endometriosis since her teens. She was due to have surgery on 23rd March to excise endometrial deposits on her bladder, ovaries and uterus. "I’ve never been particularly lucky but to have my surgery scheduled for the day the UK went into lockdown felt especially brutal," she told me over the phone.
"To say endometriosis has impacted every part of my life would be an understatement," she continued. "I am in too much pain to have sex so haven’t been in a relationship for five years. I don’t leave the house when I’m on my period because I’m scared to be more than a few minutes away from a toilet."
The hospital staff were apologetic when they told Sophia the news but, she explained to me, it felt like a letdown that they couldn’t give her a new date for surgery. The mental toll of this cannot be underestimated. "Last month my GP prescribed me a course of antidepressants because I told him I was having suicidal thoughts," she added. "I don’t know how much longer I can go on like this."
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Similarly, Katie, 27, initially had a date for endometriosis surgery in May after sitting on a waiting list for over a year. Now she’s concerned that the current management of her condition will cause long-term problems. "I’ve been taking more and more prescription painkillers (oxycodone) to help manage my symptoms. My doctor keeps prescribing them so I keep taking them but they’re really strong. I’m worried that by the time I am seen by a surgeon I won’t be able to live without them because they’re highly addictive." Oxycodone is an opioid. Also known as Percocet, it's highly addictive.
These stories – mine, Sophia and Katie’s – are by no means unique. According to modelling carried out earlier this year by the COVIDSurg collaborative – a global network of surgeons and anaesthetists – more than 516,000 planned surgeries would be cancelled or postponed in the UK during the first 12 weeks of COVID disruptions, a backlog that may take 11 months to clear.
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Behind every cancellation is a patient who allowed themselves to hope for a cure or for relief and who faces an uncertain future as the NHS attempts to return to normal service.
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Behind every cancellation is a patient who allowed themselves to hope for a cure or for relief and who faces an uncertain future as the NHS attempts to return to normal service.
The majority of women’s healthcare units in the UK, including services such as maternity and gynaecological cancers, have adapted well to the initial COVID-19 outbreak, according to a new survey published in BJOG: An International Journal of Obstetrics & Gynaecology. However there are concerns that without greater long-term planning they could be storing up problems that could adversely affect women’s health in the future.
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Lead author of that survey, Dr Bassel Wattar, a member of the Royal College of Obstetricians and Gynaecologists explains: "In the acute response phase, many elective gynaecological services were suspended and this could affect women’s health in the long term if these services are not restored rapidly, such as those with chronic pelvic pain and menstrual problems. Additionally, there seems to be an impact on the provision of gynaecological cancer treatment services, but a more detailed assessment is needed to draw an accurate picture."
The survey also highlights concerns about long-term planning for these services as social distancing continues into the next stage of the pandemic.
Dr Wattar adds: "In times of major health pandemics, a high level of morbidity is often linked to poor access to healthcare services and depletion of available resources. COVID-19 is presenting an unprecedented challenge to the medical community worldwide, disrupting access to health services and increasing the strain and demand on medical staff. As we reallocate resources to deal with the pandemic, many groups requiring continuous care, for example maternity, cancer and trauma care, will be adversely impacted."
In early June I received another call from my gynaecologist to let me know that she’d come up with a new plan to manage my symptoms: a course of hormone injections to place me into medically induced menopause. There was now a significant backlog of cancelled operations in my area, capacity was limited and my case was simply not urgent enough to warrant a new surgery date.
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Instead of spending the summer getting over a minor operation, I will be plunged into a menopausal state with little time to prepare, in the hope this will help shrink my fibroids, stop the heavy bleeding and prevent me from having to have a hysterectomy.
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So instead of spending the summer getting over a minor operation, I will be plunged into a menopausal state with little time to prepare, in the hope this will help shrink my fibroids, stop the heavy bleeding and prevent me from having to have a hysterectomy.
My first injection is at the end of June and while I’m scared of such extreme measures (no one wishes for hot flushes in the summer months), I’m desperate for some relief. This treatment may delay the need for a hysterectomy but without access to regular scans and check-ups, there’s no real way of knowing how my conditions are progressing.
Emma Cox, CEO of Endometriosis UK knows that the impact for sufferers during the pandemic extends beyond the physical. She told Refinery29 UK: "Many with endometriosis are facing difficult changes to their healthcare due to the pandemic, with cancelled appointments and surgery, and trying to navigate unexpected changes to their treatment. We are hearing lots of stories around not being able to obtain medications or being asked to change to different drugs which might not have the same effects, which can be upsetting and unsettling.
"In response to the outbreak of COVID-19, we know that many with endometriosis need our support more than ever. We have expanded the hours of our helpline, and many of our support groups are now running virtual meetings alongside our existing online support group and online forum."
In February the All-Party Parliamentary Group (APPG) on Endometriosis began an inquiry into treatment and support for those with the condition, which takes an average of seven and a half years to diagnose. The APPG inquiry is gathering evidence to understand the impact of the pandemic on those with endometriosis, and will make recommendations to the government on the actions that can be taken to ensure that sufferers are given the support they need going forward.
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Cox adds: "Society needs to wake up and accept the long-term impact endometriosis can have on a person’s physical and mental health. Instead of being taken seriously, it has often been marginalised or swept under the carpet by society as being 'women's issues', and we all have a part to play in ensuring endometriosis and menstrual wellbeing is recognised and understood."
This year hasn't panned out how any of us hoped or planned. Delaying surgical intervention may seem insignificant during a global pandemic when people are fighting for their lives every day but for women and people with wombs like me, the impact of postponed operations will continue long after life returns to 'normal'.
Refinery29 UK repeatedly approached NHS England for comment. They did not provide one.
If you are thinking about suicide, please contact Samaritans on 116 123. All calls are free and will be answered in confidence.
Support with coping after cancelled endometriosis surgery is available over at Endometriosis UK.
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