They all said “you will never look back” … Alison’s Story

My Mom, my God-mother and one of my best friends said I would never look back. They all said it was the best thing they ever did and that I would never look back. Mom was 35 when she had her hysterectomy after 2 children, my friend just 41 and sadly she had not been able to have children. I was 40 when we (my consultant and I) decided to finally go with the option of a hysterectomy. I had not been married and so had not had the opportunity to have any of my own babies. It was a hard decision to make but followed 5 years of various kinds of hormone treatments and 2 laparoscopies for endometriosis. Mom had also had endometriosis.

So, an elective decision, but I was exhausted after all the hormone attempts and operations. Today a year ago, I took myself off to St John’s and St Elizabeth’s in North London. I don’t have a boyfriend so a friend came with me to the hospital and kindly held my hand and wiped away my tears while we waited for my call down to surgery. I had a full abdominal hysterectomy removing both ovaries. I nearly had a heart attack when I first saw the 13cm bikini line scar. I cried daily and was so incapacitated (in comparison to my usual sporty self) — it was such a shock. I thought I was ready for the aftermath of the op. I was so wrong.

I wanted to write this because you think you need it be brave and hold it all together, you think you can’t show any weakness. Well, the first few weeks post op will challenge you in that. It’s OK. Go with it. If you need to cry then cry. I learned how to be really good at ‘asking’ for things.

A top tip. Talk about what YOU need during the days immediately after the op. not what your friends think you need. Friends would want to visit me after work, but by 6/7pm I was too tired for visitors, so I tried to convince them to get to me earlier. I had a nasty reaction to the pain meds and spent 5 days with a really upset stomach until my GP told me to stop the pain meds. I slept sitting upright because lying down set my stomach off (strangely??). Living on my own also made the recovery somewhat challenging. I had to recruit in help to wash my long hair and had plenty of people cook me meals. I found the Hysterectomy Association website to be very helpful and useful. I read the forum updates regularly in those early days. As you are reading this, keep reading. Someone on the forum will have had a similar operation / illness and will talk to your experience … It helps you know you are not alone.

My recovery was slow. What I also learned is we are all different. I thought that because I was fit (Triathlon, 10km swimmer, runner, cyclist) it would be a quick process – but instead of 6 weeks off work, it was 8. My return to work was harder than I imagined – the men in my corporate office all wanted to know if I had enjoyed my extended holiday and where had I gone. So, I also learned that I needed to be honest. It was too upsetting to ‘pretend’. I took full advantage of my work employee assistance programme one tearful day and chatted to a wonderful councillor who gave me a bit of perspective of the reality of no longer having the choice to have babies. Very helpful process to talk it through with an objective person who has no vested interest in consoling me or being on my woeful, sorry side. She gave me some brilliant coping techniques and tips. Practical, objective advice. Highly recommend it if you have the opportunity.

I started walking as soon as I could after the op. in fact the very next day. My daily 5min walks became 10 and then 20. By 8 weeks I was walking for up to an hour. I believe this helped me get back into my sporting activities and also helped me clear my mind – walking was therapeutic. I had also booked a long distance swimming holiday in July so I was determined to get there healthy and ready for a beautiful time in the Mediterranean.

I started crocheting. In my 2nd week post op I went to a lesson (in a cab!) just to get out the house and I now have a beautiful granny blanket made up of over 100 squares. Do something with your hands. Knit, sew, crochet. It’s like yoga for the mind!

You are probably reading this and thinking why is she writing all of this. Well, having learned to be honest about how I was feeling, I wanted to be honest about the experience and a year on I have some perspective on this (I think). I promise you – It gets better! Today I am stronger than ever and often have to remind myself just how strong I feel. I have more energy and am less likely to snap at people. I run, swim, lift weights, walk and even did some Pilates in the early days of recovery (highly! highly! recommend).

I do sometimes get a little upset about not having children, but a very dear friend suggested to me that my natural mothering instincts need not be just for my own children. I could put those caring instincts into looking after myself for once and later into other people’s children. So love yourself through the recovery and then find something you can devote your mothering instincts towards. I have nieces and nephews and plenty friends with children. I also remember the words from the bible from Exodus which reminds us not to covet, so I try not to be jealous and try not to want what they have. I have plenty to be happy about and grateful for in my life. I am happy, have my health back and feel amazing every day. I am early 40’s and have no children, but I have SO much more. I am no longer crippled by the exhaustion this disease causes and I feel fitter than ever — I have even lost a stone in weight since the days before my op! It is possible – even on HRT.

I wanted to write this today as its my 1 year anniversary of the op and I can, with conviction, now also say that “you will never look back”. There is a reason why you have had to have the hysterectomy and all you need now do is get through the process of recovery in your won way, and time. You will see — it really will be the best decision you ever made for your health and well being. Take care and treat yourself kindly. Only you can do that.

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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.

15 comments

  1. Ellie – what I learned was that the power of choice in life is not to be underestimated, but know this: you are choosing health and energy, which empowers you even more. I was lucky in that reconciling all of this happened quite soon post op. Somehow, someday when you least expect it peace will come to you in regards this decision, but that will be in your time. Mine came when I least expected it and in my own (ritualistic) way I said goodbye to that part of me, and welcomed the future. I realised it was a cycle of grief, so be sure to get support in that field. Remember though – you are still you, stay strong and best of luck!

  2. Hi Marie – sorry for the delay in replying. As far as HRT goes, I started on Premarin on Day 2 (or 3?) post op. We wanted to start me immediatley to avoid any of the headaches, hot flushes etc. I have never looked back. Am now living in SA and my GP here wants to change me to something different on a lower dose, but I am sitting tight for now as I see no reason to mess with somethign that is FINALLY working. best of luck. Take care, be kind to you and things will fall into place real soon 🙂

  3. I’m 6 weeks after my op, had ovaries and cervix and a fibriod simular to yours removed, I also had a cs with my first child so felt I had a fair idea of what to expect but it was so much easier not having a newborn to look after! I was scared initially but have to say it was all so much better than I had hoped. Pain relief was excellent and although uncomfortable I was never in agony. I was advised to keep up with the pain relief as it speeds the recovery period and I followed all the tips; lots of water, peppermint tea, gentle exercises up and walking as soon as possible. I still get very tired and know when Iv’e done too much. My main problem seems to be hot flushes and poor sleep at night but I’ll hope to get some help with these bits. I had thought I would get loads done at home, at least some of my to do list, but no. If you have time before June try and get as much as you can done before so you can recover without worry. Treat yourself to some new pillows and bed linen and make your bedroom your sanctuary and use it as an opportunity to have some calm in a busy life. Best of Luck

  4. Thank you so much for taking the time to write. I am 10 days post hysterectomy & feeling unsure about things. I know this is totally normal but can’t help panicking that what I’ve done is so drastic & was it the right thing?! My husband then only has to remind me of the last 12 months of not going anywhere without my hot water bottle & painkillers, weepiness & feeling so dreadful…all of the time with no let up.
    I am also very fortunate to have had too heathy boys before my endo got the better of me. But having my op at 37 was still a bit of a shock.
    I know the road ahead will be a long one, but I am very much looking forward to getting back into my walking & feeling myself again. Your post has given me much encouragement. I am not expecting miracles and am trying to take things easy (quite frustrating a times), but I know one day I will also be able to say “I’ve never looked back.”
    🙂

  5. Gosh that would a very long answer indeed Wendy, the whole site is full of advice, hints and suggestions and perhaps it might be good to grab a cup of tea and sit down for a good read 🙂

  6. Bless you all, Alison and Kate especially. I am 17 mths post op, Mum to 3, Nana to 2 lovely boys, am aged 56, so am blessed! Yet I still mourn the loss. We Mums – and I say that to you too, because all women have that potential, can take motherly care of all people we meet who need loving, and may God bless you in being a loving person and friend to all you meet, and that will bring you blessings too !! x

  7. This was good to read.I had a hysterectomy two years ago.after five years of endometriosis and fibroids and constant bleeding.I’ve not been able to have children.it breaks my heart.im in my second section of counselling.I feel so isolated. Its reassuring to read that someone out there may have some idea how I feel.I just want to wake up and have this awful feeling lifted from me.I want to feel happier.

  8. Awake early this morning due to the pain, I’ve been diagnoised with two large fibroid’s. I have had no children like you and my new boyfriend and i are unable to as he is infertile. I’m so glad a friend gave me detail’s of this website as I am so scared and really don’t what to do but reading your story has given me the inspiration to decide to have a full hysterectomy and take away my pain. My heart goes out to you and I hope you make a great recovery. I have another appointment at the hospital on the 11th of April so I think that is my decision day. Thank you for your story it has helped me so much to understand so much.

  9. After 20 years of gynae related problems, I have just had a total hysterectomy (2 weeks ago). I’m 41 now but started with period problems and pain right from the age of 20, at a young age I was treated in a rather patronising manner by my doctors who basically looked over their half mooned glasses and said “don’t worry dear, it will sort itself out eventually”…….finally I ended up moving to Chester with my then husband and my symptoms had got so bad that I ended up having two major ops within a year of each other. I had stage 4 endometriosis which had caused large ovarian cysts and a frozen pelvis. I had a large vertical 6 inch cut in my tummy each time which was very debilitating afterwards and took about 12 weeks to get over each time. It left me with no ovary on the left hand side and very little ovary on the right h/s, my Fallopian tube had also been damaged. Needless to say after 3 goes at IVF I’ve ended up without children. More recently I’ve had problems with fibroids and heavy bleeding etc, this left me anaemic. So just 2 weeks ago I had a total hysterectomy which despite being told it would probably have to be done through another large tummy cut I came round to find it had all been done laprascopically (not sure of spelling!!) Although I’m still a little sore and have to be careful things are so much better than my previous ops. I’m delighted to see that a year on everything is so much better for you, you sound like a new woman. I hope it will be the same for me as I finally feel I can get my life back together after what feels like so many wasted years of always feeling so under par! Any advice on HRT would be appreciated, been told I have to wait a month. Stay well, thanks for sharing your experience xxx Maree xxx

  10. a very brave and beautiful piece of writing that will comfort and inspire many others!
    well done on your full and ongoing recovery, reclaiming your personal power and helping others.

  11. Thanks for posting this! I am 3 weeks post op and am ready for the world again, 39 married and childless but still making plans. I am active too but this 2nd op (the first was a lapronomoy for endometriosis 2 years ago) has made me gain a bit of weight, fingers crossed I can get this off as it isn’t pretty with a tummy hanging over that blinking scar!
    I have always been blessed with a happy disposition and do keep my chin up. But this blog let me cry and smile with you so big thanks!
    Give it a year and hope to be back doing my 10k for charity again too, maybe sooner?
    Kate x

  12. Thanks for that, just what I eeded to hear 🙂 – I am terrified, but have a lot to be grateful for – an active ‘sporty’ life and having my son at age 37. Now 50, with a 14cm fibroid tumour which is making my life a misery, I am having a hysterectomy in June. Very mixed feelings – but it has to be better than living with this ‘alien’ !! Having had a caesarean in 2000, I know what it feels like somewhat, and I said ‘never’ again.But have no choice i the matter! Any positive vibes welcome!!

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