October 28th, 2021. I was considered one of the “lucky ones”. My abdominal hysterectomy (removing the uterus through an incision in the lower abdomen) had gone ahead at University Hospital Waterford. By then, Covid numbers had started to creep up again and, within days of my operation getting the green light, hundreds of others were cancelled as hospitals all over the country tried their best to get to grips with another winter Covid spike.
It was an extremely isolating, lonely experience. Due to Covid, no visitors were allowed, so my twice-daily walks up and down the ward corridor became my social “highlight” of those five days post op. I was also blessed that some friends’ relatives worked as nurses at the hospital so they used to pop into me with a magazine or a paper. I don’t think they fully realised the positive impact of those simple acts of kindness.
Sixteen months later, there are still days when I don’t feel that same sense of “luck” that I felt when I heard my operation was finally going ahead. Thankfully, those kinds of days are becoming fewer and I’m gradually adapting to a new way of life post hysterectomy. My gynaecological journey has not been a straightforward one so I thought it might be worth sharing my experience for other women who might find they can relate in some way.
Twenty years ago my then boyfriend (now husband) and I were on holiday in the US when I was struck down with excruciating cramps that resulted in me spending a few nights in a Boston hospital with a suspected burst ovarian cyst. Those gut-wrenching abdominal cramps had been occurring since childhood. Appendix extraction at the age of 13 had helped a little but they sporadically made an appearance throughout my teenage years. When I became sexually active in my 20s, my GP prescribed the contraceptive pill, which seemed to help physically but not mentally; so, after trying various types, I eventually had to abandon ship as the toll on my mental heath was just not worth it.
‘There’s too much talk about menopause? We’re just making up for the last 20 goddamn years when women suffered in silence’
In 2010, aged 34, I gave birth to a healthy daughter via Caesarean section. She was breach in the womb and not for turning. The pregnancy had been challenging both physically and mentally, so I firmly believe nature sensitively intervened, to limit further gynaecological trauma. I was relieved when our daughter arrived safely – as did our son, 3½ years later.
In 2016, I was back in hospital for a colonoscopy. IBS (Irritable bowel syndrome) was diagnosed and the subsequent prescription was game-changing for me. By 2018, however, abdominal cramps were back with a vengeance, so my GP referred me to UPMC for yet another ultrasound, which confirmed I had a series of uterine fibroids. One was putting pressure on my bladder, resulting in significant discomfort. As I was only in my early 40s at the time, I didn’t want to face a full hysterectomy, so I opted for uterine embolisation instead, which successfully shrank the fibroids to 60 per cent of their original size. (I wrote about my experience of this procedure here.)
While the fibroids seemed to be under control, unfortunately the pain didn’t subside because I then started having excruciating cramps linked to my gallbladder. (Apparently gallbladder pain is the closest men will get to understanding labour pains and, after a series of flare-ups, I concur with that theory.) Following a week-long stint at St James’s Hospital in Dublin, where my liver readings were described as “off the charts”, it was eventually decided that my gallbladder was the root cause and was subsequently removed at University Hospital Waterford.
Abdominal pressure remained, however, because despite the fibroids being successfully reduced under the embolisation procedure, one appeared to be still pressing on my bladder and was now causing pain in other areas too. After much discussion with my GP and consultant gynaecologist, we collectively agreed an abdominal hysterectomy was the last resort. I know many women struggle with losing their uterus, but I was genuinely grateful that it had done its job and now it was time for it to go. It was strange to watch the same doctor who had so sensitively and safely delivered our two beautiful babies, now focused on taking away their original home.
The hysterectomy was a physical success in that the fibroids were officially gone. However, despite holding on to my ovaries, they ceased working, so I was thrown into surgical menopause at 45. This was the same age my mother was when she gave birth to me, so I did not expect to be facing into this part of a woman’s journey so soon. It was quite a shock to the system, physically and mentally.
I’m glad to report my gynaecologist was amazingly proactive. He knew the procedure had taken its toll psychologically so he extended my original 12 weeks of sick leave by a further two weeks, just so I could focus on rebuilding mental resilience now that the physical scars had healed. Over the last 15 months, he and my GP have been trying their best to find the right concoction of HRT for me, in addition to encouraging me to eat well and regularly exercise. I’m not quite there yet but I have hope that the balance is shifting in the right direction.
Alongside dealing with these physical ailments, I have also been undergoing psychological therapy to finally address a lifelong phobia of dogs linked to childhood trauma. (I wrote about that experience in July 2021 here). As part of my course “homework” my counsellor recommended I read Dr Gabor Maté's book When the Body Says No: The Cost of Hidden Stress, and it prompted a lightbulb moment for me in terms of a link between all these physical ailments and childhood trauma. Dr Maté references a 1990 study carried out on women patients at the gastroenterology clinic of the University of North Carolina School of Medicine which concluded that “those [women] with abuse history had a fourfold greater risk of pelvic pain… and more likely to undergo various surgeries such as gallbladder operations [and] hysterectomies”.
Dr Maté also references Dr Lin Chang from UCLA medical school, who summarises irritable bowel syndrome as having both internal and external stressors. The latter “includes abuse during childhood which make a predisposed individual more prone to developing IBS”. Dr Maté goes on to say that “women who have been sexually abused are prone to constipation when the muscles in their pelvic floor are chronically tight, incapable of relaxing.”
The last 12 months have been extremely stressful dealing with the unexpected death of my sister while still recovering from the hysterectomy and trying to continue to thrive in my day job as a CEO of a market-leading business. Unsurprisingly, my IBS spasms have started to flare up more intensely as a result. My GP has referred me back to the same consultant who first diagnosed the condition seven years ago. As I prepare for that appointment in the coming weeks, I plan to share not just my physical medical history of the intervening years but also the psychological developments too because I firmly agree with Gabor Maté's theory that “the practical exclusion of people’s life histories from the medical approach to illness deprives doctors of powerful healing tools”.
He concludes the final chapter of his book with this apt statement: “Health rests on three pillars: the body, the psyche and the spiritual connection. To ignore any one of them is to invite imbalance and disease.”
– Gabrielle Cummins is chief executive and programme director at Beat 102 103
Tips to help smooth your way through abdominal hysterectomy
In the hospital:
Choose loose nighties and underwear that are a few sizes bigger than normal as you don’t want anything touching the wound.
Opt for slippers rather than flip-flops because you may have surgical socks on for a few days.
Pack a shower cap and rubber flip-flops. Showering every day helps you feel more “human”, but you may not always feel like washing your hair, so the cap is handy and the flip-flops make you feel more secure on the wet surface.
Bring “day” clothes and “night” clothes. When you’re feeling low, post op, putting on fresh clothes each morning and night will help you feel a little more “normal” and improve your mental health.
Bring peppermint tablets and prune juice – a godsend. (If you know, you know.)
Once the catheter has been removed, get out of bed as soon as you can. Walking significantly helps speed up recovery.
You may not feel like reading a book or even a magazine. Avail of the wifi to access a frivolous, lighthearted series online which requires little concentration.
Download short breathing exercises. If you’re used to operating at a high level, it can be difficult to be restricted, so 10-minute meditation apps can really help restore calm.
Don’t be afraid to ask for a painkiller. With resources under pressure, nurses may not get to you as often as you’d like, so keep track of the hours since you last received medication.
Practise gratitude and bring a pen and thank-you cards. At the end of your hospital stay, you will feel eternally grateful to all the staff who helped you when you were likely at your lowest. Acknowledging their support in this simple way will make them and you feel better.
Upon discharge from the hospital, ask whoever is picking you up to bring a small cushion. Place the cushion between your abdomen and the seat belt to relieve pressure.
Put two extra pillows in your bed – one to support your back and one to prop up your abdomen; it will help in terms of getting a few extra hours of sleep.
A litter grabber will be your best friend. You won’t be able to bend down for a few weeks and it’s annoying to be asking others to pick up items all the time. Simple things such as dropping the lid of the toothpaste can be stressful, and the grabber means you can pick it up easily and hold on to some level of independence.
Gradually increase walking. The recommended advice is to start off achieving five minutes and, if you feel able for it, add five minutes every day on a flat surface.
Keep a diary. On difficult days, read back over the previous few days/weeks and you’ll soon feel a little better about how far you’ve come on your recovery journey.
While your insides adapt to the changes, stick to a nutritious but bland diet to lessen those difficult wind pains.
Accept help. If friends/family volunteer with meals or house cleaning, welcome the support.
Avail of online support groups. Reaching out to others who have gone through similar experiences for advice/support can be hugely beneficial. I continue to find two Facebook pages helpful: Hysterectomy Ireland and The Irish Menopause.
The chronic fatigue can knock you sideways, so if this is a side-effect for you, take short afternoon naps that will provide enough energy to power on for the rest of the evening.
Your stomach can be swollen, crampy and puffy for quite some time. It is a strange sensation but will eventually subside. Eat well, move more, talk through your experience and you will come out the other side. Best of luck in your individual recovery journey!