Facing the fear and doing it anyway – Jane’s Subtotal Hysterectomy Story

Hello everyone! I’m Jane and I had a subtotal hysterectomy 12 days ago now, on 18th December 2013. I kept my ovaries. I’m 45 years old and had had fibroid issues for six years. These started off as just being irregular periods but in the last 2 years had escalated to a combination of hormone imbalance and fibroids leaving me feeling out of sorts more often than I was feeling normal, long stretches of being savagely pre-menstrual and never knowing when my (heavy and leak / flooding-laden) period was going to arrive or how long it would last.

I had investigated and asked about the possibility of embolisation and ablation but was it was explained clearly to me why these were not suitable treatment options for me, leaving me with the choice of the “status quo” until menopause or a hysterectomy.

I was extremely resistant to surgery initially, for many reasons which will be familiar to those who have had surgery and those who are considering it as an option: loss of independence, even for a short time, risks of surgery, the fear of the unknown – I am childless and had never had a general anesthetic before and hadn’t been hospitalised since my early 20s; but it was mainly the fear which deterred me.

For me it was the realisation that there was no other way to change my situation, for better or worse, which ultimately helped me to take ownership of the situation and sign the consent form. I did lots of reading and discussing with people who had had the op as well as those who had had C-sections in childbirth (it was clear to me from an early point that I’d be having an abdominal hysterectomy if I had one).

The NHS Choices website and the Hysterectomy Association website were both very useful objective sources of information and I’m writing this as a “thank you” to people who contributed to these sites in the hope that I can now give back something.

I have been incredibly lucky throughout my experience. My GP was incredibly supportive, saying that I should not accept any comment that I would “just have to live with” my fibroid / hormone issues. In her words “We can put a man on the moon, Jane, so we should be able to do something to deal with this issue!”, and this view gave me the confidence to ask direct questions at my initial hospital appointment.

The registrar whom I saw first, the doctor who carried out a hysteroscopy for me and the nurses who held my hand throughout, the surgeon and his secretary, all of these people were kind, generous and respectful and helped to guide me through the process of making the decision.

And so to the day of admission… I can honestly say that I’ve never been more terrified in my life – as evidenced by the through-the-roof blood pressure reading at around 7.30am when I arrived at the Admissions department! – I was taken down to surgery at around 11.30am, and finally arrived on the ward at around 4pm.

How was it? Well, first the tough things: waking up in recovery was horrid, I was in pain, very disorientated and have a memory of flailing around for a while before the morphine kicked in (I have no real concept of how long this took, but it can only have been a matter of 15 minutes maximum); and having the drain removed from my wound was agonisingly painful……. BUT nothing else which has happened has been even close to being agonising. There has been discomfort, but no real pain, and I haven’t taken anything stronger than paracetamol since coming home, 3 days post op.

My hospital stay was very positive. I had the most wonderful care, provided by nurses who allowed me to do everything by myself which I could, and helped me to do everything I couldn’t do. The pain of the first 24 hours was well managed with morphine and then with Tramadol and paracetamol. I had a wash on day 1 post op, then a shower on days 2 & 3 (day 1 with the assistance of a fantastic student nurse, day 2 on my own). I was encouraged, but not hassled, to eat. I slept well. I cannot praise the wonderful people who took care of me enough. The ward was spotlessly clean and at no time did I feel like anything other than a person.

The biggest revelation however has been since coming home. I was worried how someone like me, who’s usually constantly “on the go”, always has a to-do list, and who feels that she is the “looker-afterer” in the family, would cope. Wouldn’t I worry about things not being done or, worse still, being done “wrongly” (i.e. not how I’d do them!!)? How would I manage to sit still for long enough to allow my body the rest it needs at this point? Would I be in huge pain? How would I get comfy? Would I be able to get up and down stairs? Would my partner and I drive each other mad?!

I shouldn’t have worried – the main reason is my amazing partner, who has cared for me in a way I didn’t think possible pre-op: he has shown patience way beyond the call of duty, has helped me up and down the stairs; has cooked, washed, ironed whilst I’m not able to and has allowed me to do the things which I’m physically able. In the first two days at home, he climbed into the shower with me, got me dressed, and helped me to the loo more times than I can count. Even now that I can do all these things on my own, he “hovers” within earshot, “just in case”.

It was 6 days post-op before I managed to get really comfy in bed and sleep well at home. I can now lie on either side or my back, but not on my tummy (which is how I normally sleep, so I’m really looking forward to being able to do that!). I can get into and out bed, into and out of chairs and sofas and up and down stairs easily, if slowly.

My wound is already almost invisible and is only about 10cm across, just below where my pubic hair will start when it grows back! I’m using arnica to help with the bruising around the wound and that has really helped. It still feels strange to have a scar, but the appearance of it it so much better than I was expecting – I was expecting it to look as if someone had attacked my tummy with a macheté! – so I am hugely reassured by that.

I had a tiny bit of vaginal bleeding on day 1 post-op but have had nothing since, so here’s hoping I’ve got away lightly with that! Things “inside” are definitely not back to normal yet, from my digestive system being settled to muscles being healed, so I am definitely aware that I’m not functioning normally yet, but my appetite is back (since day 6 post-op) and I’m using the loo without any problems.

I’m being very carefully with lifting and stretching and trying to balance this with keeping as mobile as possible, going for walks etc. I have been more mobile than I thought possible. True, my movement is MUCH slower than normal, but for once, there’s no rush! I can still feel the effects of the anesthetic, in terms of feeling tired, but am hopeful that this will pass soon. Emotionally, I have had weepy moments since coming home, as predicted by various websites for childless women post-hysterectomy, but they have been just “moments”, not generally low days or even hours.

I am a teacher and have been given 8 weeks off work, followed by a phased return. I’m hoping to be back to work as normal by the end of February. I am really grateful to my headteacher & her team for granting my request for this amount of recovery time, on the understanding that this would enable me to be properly recovered before returning to work, which is ultimately less stressful for the pupils and me. I am hoping to be able to “tinker” with email by mid-January, to keep my hand in with what’s going on at school, in the hope that this will make my return to work less of a shock when it comes!

So, to conclude….. I was afraid before the op, more so than at any other time in my life, but so far, I’m glad that I “felt the fear and did it anyway”. I can already see that a fibroid-free future is more pleasant than dealing with the combination of hormones and fibroids which had become so life-restricting in recent years. Yes, I still have the “middle-aged-lady-hormone-issues” to tackle but am very hopeful that this will prove to be more possible than handling the double act! My lovely man and I are also planning a post-recovery holiday to Mauritius in April, so there’s lots to look forward to!

Thanks for reading this far, hope it’s useful.
Best wishes on your own journey, Jane

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