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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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in my own words book coverNow available on our online store and all other online book store’s. 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.

This Post Has 11 Comments
  1. Hi Jane
    Thanks for sharing your story. I am due to go in for a hysterectomy on the 22nd of January due to a number of large fibroids which have caused me problems over the past 20 years. I had initially thought that despite this being the last resort, it would end all my problems and actually give me a new lease of life. I have however been reading some of the blogs on the internet and am now terrified of going through with the op! Stories of incredible pain with wind, swollen stomachs up to a year post op, weight gain, constipation, pain on passing urine, infections etc have terrified me! I am now wondering if I should just put up with the pain and discomfort of the fibroids or be rational and think that it’s more likely people will post things if they’ve had problems rather than people like you who have managed to survive more or less unscathed. I am also a carer to my mother and whilst I will get 2 weeks respite post op, will have to restart my caring role after this. I know you can’t advise me on what to do but I would really welcome both your thoughts and Linda’s about going forward with the op or whether to soldier on with the fibroids. Feel incapable of rational thought just now! 😉

    1. My only concern for you would be as a carer. Recovery is much harder and much longer than people think, even than GP’s suggest and I doubt that two weeks will be long enough for you to recover before going back to being a carer again. I’m not sure where you are living but if you were based in the UK I’d strongly suggest you asked your GP to speak with social services to put a care package in place for your mother for a couple of months post op at least.

    2. Thanks for this Linda. I will look into this. Had my pre assessment yesterday so have come away feeling more prepared re post op issues. Thanks again. Wilma

    3. Hi Wilma,
      Thanks for your response to my post. My thoughts on your post are as follows:
      – I agree with Linda that you’ll need more than 2 weeks’ respite from your caring role to fully secure your steady recovery. I’m 4 weeks post-op today and have been feeling much more “normal” since 3 weeks and 2 days post-op, but I’m still very cautious about lifting and still tire easily. However, if you can arrange for more cover, this shouldn’t be a reason to not have the surgery
      – ultimately only you can decide whether or not to have the op, but you know this. 20 years sounds like a long time to me, who had only had symptoms for 6 years. I have been very lucky, but I’d add to my account the comment of a friend of mine, who had a hysterectomy in 2012. She had a horrible hospital experience, not being offered a shower or proper wash in the 4 days she spent in hospital and being sent home with undiscovered internal bleeding which caused her lots of pain and led to a re-admission BUT she still says that having the op was the best thing she ever did. I also think you’re right that not everyone who has a positive experience will report about it – statistically we are much more likely to report negative than positive experiences. My “plan” was to prepare myself for the absolute worst-case scenario in the hope that, whatever happened, I’d be ready to cope with it. I think that reading as much as possible, even scary negative experiences, is useful. As you can see from my account, I was still terrified when I went into hospital, but what made me embrace the op was the knowledge that there really wasn’t another way to change my situation, and what I was experiencing and inflicting on the people I love just wasn’t a tenable situation in my view, I needed to do something to affect a change. Sorry to not be able to offer you any advice as such. I feel sure that you will make the right choice and wish you good health and strength and happiness, whatever you decide.
      Best wishes, Jane x

  2. Thank you ladies for this reassuring page. I am booked in for my hystorectomy on 31st Jan. and feel a lot better after Janes’ account.
    Wishing you all a speedy recovery and a happy 2014
    Alex

    1. Hi Alex,
      Thanks so much for your positive response. I really hope that all goes well for you, both with the op and your recovery. Here’s to a happy and healthy 2014!

      Jane

  3. Thank you for sharing your story. I have a fibroid issue and I’m having a hysterectomy (but keeping ovaries) on 20 jan. I was quite relaxed about the op but I’m now terrified having read around a few sites. I have 2 children but I’m getting married in August and I’m worried I won’t feel the same or will age, put on weight, not be me etc. I’ve had 2 c sections – 1st emergency, 2nd planned. Is an hysterectomy like a c section re recovery ? Thank you for reading my comments. Jo

    1. Hi Jo, a hysterectomy is major surgery whilst a C-section is not. The recovery rate is very different and it takes longer to get over the hysterectomy. There is no reason why you should feel any different from you post surgery (after you’ve recovered) either.

  4. Dear Jen and Wendy,
    Thanks for your lovely responses to my STAH story. Wendy – well done on walking a mile per day already, I am in awe of you!! Jen – congratulations on getting back into those jeans, I too am looking forward to the day that I can move out of “comfy” trousers and back into jeans!! I wish you both all the best for 2014 and continued steady recovery progress!

    Jane xx

  5. Hi Jane I’m so pleased that this has been good for you I had TAH 20th Nov so I’m about 5half weeks post op. Now sitting here back in my jeans ( let out a small scream of excitement when I done them up ) can sleep on my belly absolute heaven and still have my boys helping me or hovering near me when I do little light things. I’ve have found out what good cooks my hubby and son are they kept this very well hidden from me lol. Should be back to work end of January , got my check up then. I wish you all the best on recovery x

  6. Hi Jane I had my TAH BSO on the 19th December. Recovery has been very uneventful with the support of husband and grown children and I feel fantastic. No problems and I’m walking 1 mile every day. I’m off to LA in 5 weeks! Wishing you all the best for 2014.

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