I had an abdominal subtotal hysterectomy and bilateral salpingectomy just over 3 months ago. It took me 1 ¾ years from diagnosis to making a decision to have a hysterectomy. I hope my reflections might help others who are going through this journey.
I suppose my periods started getting heavier 3 or 4 years ago. It’s funny how the volume of bleeding goes up slowly without you noticing how bad it’s become. Just over 2 years ago I was very tired and I asked my GP to do a blood test which came back as anaemic. The iron tablets prescribed made me uncomfortably constipated and whilst taking them I noticed a lump low down in my abdomen. I wondered if this was my constipated bowel, but it didn’t go away after the iron tablets. My periods had also lengthened and become unpredictable. So I went to the GP who referred me to a consultant gynaecologist. I have private health insurance and I saw the consultant that evening. He took my history, examined me, and I had an ultrasound. He diagnosed a fibroid uterus the size of a 16-week pregnancy (the lump) and said a hysterectomy was, essentially, my only option.
I wasn’t that surprised as my aunt had also had fibroids and a hysterectomy at 42, but his blunt manner left me reeling. A follow-up email in response to all the questions I had (I had really struggled to take the news in) was similarly blunt. I took the (then) new drug called Esmya to try shrinking the fibroids whilst I considered my next steps.
The next 3 period-free months (a side effect of Esmya) were a welcome break; when my periods returned they were not as heavy, but within 6 months I was back to square one. Eventually I asked my GP to recommend a different gynaecologist and I saw him within a couple of days (again, thanks to the private health insurance). He was a lot more willing to listen and explore options. It was clear that he regarded myomectomy or embolisation as less good options for me but was willing to explore them if I wished. He regarded hysterectomy as a good option but explained that I had to get my head round the implications of the surgery: I am single and haven’t dated for years, I don’t have children, and I was 41 by that point. It wasn’t that I hadn’t wanted children, I just hadn’t met someone I wanted to have children with and didn’t want to do it alone. He was very clear that, for the sake of my emotional health, I needed to decide how important having children was. We agreed that I would take another course of Esmya, do some thinking, and see him again in 5 months.
At my follow-up appointment I was none the wiser about what I wanted to do. He wouldn’t push me, but I noted that he did say several times ‘a hysterectomy is a good option’; he felt that the nearer I got to 45 the easier the decision would be. I decided to leave things as they were.
My next period arrived and I forgot to go to the loo every hour to change my tampon: I flooded through a tampon, sanitary towel and all my clothes and left a blood stain on the windowsill I had been perching on whilst chatting to a colleague. The next day, walking across Waterloo Bridge as the sun set I thought, what am I doing? I have more chance of flying to the moon than having children and instead I am going to end up not being able to live the life I do have because of my periods. I had been lucky so far: I hadn’t had concert tickets or a transatlantic flight when I had my period, but it was only a matter of time. The number of sanitary towels and tampons I was getting through was crazy. And all the while I was having to take iron supplements to balance out the blood loss. It was a real moment of clarity. I went back to the consultant a month after my previous appointment and said I was ready to have a hysterectomy. Decision made.
What I worried about before the op & what I think now
My first worry was how I would cope with being out of the office for so long. I prepared well and my work place was supportive and put no pressure on me with regards to returning to work. The 5 weeks off post-op went slowly for me, but fast for my colleagues; it was like they barely noticed my absence! A phased return to the office worked well for me.
I worried I would feel less like a woman. I didn’t look forward to not having periods (well, I didn’t mind the pre-fibroid ones) and I have regrets that I never got to use my uterus for its biological purpose. Post-op, I don’t feel less like a woman. And because I retained my cervix and ovaries, I still have some cyclical spotting, which I quite like. Knowing I will never have children still hurts, but as an excellent blog I found said, “It’s not great. But it’s okay.”
I was worried about coping on my own when recovering. In fact, I was physically much more able than I expected, and was able to walk every day and was well enough to have lots of visitors to entertain me. What I hadn’t expected was the emotional impact of the op/recovery, and it took me a few weeks to get my confidence back. I’ve also needed to take pan relief for much longer than I expected.
I was worried about being bored during recovery. Time went slowly, but I wasn’t bored. Instead I found I enjoyed slowing down, reading the paper properly, going for walks, and ‘decompressing’. I have managed to retain some of the good bits of my recovery routine even now, and now take a daily walk before work and prioritise spending time with friends and colleagues.
I hoped I would be slimmer after the op. I am! A 16-week fibroid uterus isn’t that big, but my tummy is now more flat and the occasional urinary incontinence I had put down to ‘age’ has stopped. My scar is neat and I have become quite proud of what it symbolises.
I kept a notebook throughout. I have written down notes from every consultation, Q&As, lists, dodgy poetry (my way of expressing difficult times), helpful quotations, useful phone numbers, pros & cons lists for surgery vs not, and used the notebook as a daily diary throughout my recovery. It has been so helpful to see how much I have progressed when I am feeling low.
The hysterectomy journey is not an easy one, for sure, but for me it has been a chance to learn new things about myself and I am positive for the future.
In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.
Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid; get your copy today and share the stories that help you feel less alone.