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Illprepared for hysterectomy – Paula’s Story

I was told a hysterectomy was my only option for the endometriosis I had suffered from for many years, as it was so bad a total removal of my ovarie,s tubes, womb and cervix by cutting along the bikini line was my only option.

At the age of 45 and not really understanding the enormity of this op I agreed with the advice of my consultant. Now 5 mths later I’m stunned at the lack of pre-op information as well as post-op.

After 3 days I was sent home with an exercise leaflet and no foretelling of what was to come. Pain like I’d never experienced but coped with, a bladder that could no longer function right, a brain that can’t or won’t rationalize, weight gain, depression. And absolutely zero support from anyone in the medical profession. I’m now pain free from endometriosis but confused and alone with a list of side effects that were not explained to me.

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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 8 Comments
  1. I am now 12 post hysterectomy, my stomach is still very uncomfortable and sore, and at the end of the day it gets worse, I feel that I will never be back to normal again. I used to be so active, tried to walk every day but my weight is creeping up even though I eat lots of salad and veg, so that is getting me down. Also I feel so scared about having sex with my husband again, he is making hinting noises but I just can’t at the moment. Having a real low day, every time I look at my stomach which today looks like a inflated balloon I feel so depressed.

  2. I can completely relate to your experience. I had a sub total hysterectomy and my ovaries removed in Dec 2012. I was discharged without even the exercise leaflet as they had run out! The pain was bearable with painkillers but it was weeks before I could walk even a short distance and oh the bladder and bowel problems! I was under unbearable scrutiny when I returned to work as a couldn’t think straight and ended up being diagnosed with anxiety and depression. Pills didn’t agree with me so I set out to sort myself out as no one else seemed to know how or care. I now manage my symptoms with diet and yoga, I read books on managing the mind and as time goes on the physical and mental symptoms are improving. I can think more clearly, I’ve stopped crying and in the Autumn I managed to get back to the top of a couple of fells in the Lake District.
    What I am trying to say is be kind to yourself, it is a long recovery and a lot to come to terms with but remember it will be on YOUR terms. Join groups of like minded women such as a yoga and mindfulness class. They are non competitive and non judgemental. If you don’t fancy one of the poses you can just sit it out and no-one thinks less of you.
    I still have the flushes but they are lessening, I still have the scar, the wobbly belly,the odd mood swing and some days everything is definitely not rosy but those days are becoming less frequent. A friend of mine is battling breast cancer and when I asked her advice about cutting my work down to 4 days she said ‘go for it, this isn’t a dress rehearsal make the most of you’re time’. That’s exactly what I plan to do.
    I hope you find a recovery programme that suits you and you can come to terms with the experience you have had. Wishing you all the very best.

  3. So sorry to hear you felt ill-prepared pre and post op. Did you have bladder surgery too? I too expected to have total hysterectomy after suffering endo for years. Told when I came round that my cervix could not be removed as due to adhesions it was attached to my bladder. Couldnt have HRT as endo still present and so worried that endo, pain etc could return but given no chance to discuss my fears – no doubt made worse by instant menopause big time the same as you experienced. I did find people to talk to and share with though and just wanted to say hang on in there. If you do have health concerns find a medical professional you can talk them over with and get some answers and the after care you need. It took me a year before I was really well and I did get my bounce, and my figure, back again. Be easy on yourself, take any help you are offered and be patient. I haven’t regretted getting shot of the awful endo I hope for good. Best wishes.

  4. I went through something very similar and was ill for two years plus before I finally found the right HRT. I had tried without for nearly a year and became so ill- as you say we went from hormones to nothing over night. I was put on a low dose of HRT and it improved sore vagina and the bones a little, but still felt awful and gradually became anxious, panicky and then very depressed. I was eventually helped by the Chelsea and Westminster Menopause clinic-I am now on high dose of HRT-low dose is useless for you at the moment and I also take some testosterone. I am now back to the old me and live life to the full, and I am amazed and overjoyed to get my life back. I worry what will happen when I need to come off it- but not much-I’m too busy enjoying a life I thought I had lost for ever. Take action now and ask to be referred to a menopause clinic. Good luck Elen x

  5. hi, i had my hysterectomy in April 4 years ago in the UK ( i live abroad and i am not a UK citizen) in a private hospital as my insurance was paying for it. It was a total hysterectomy as I had a tumor on the external wall of my uterus, thank God it was proved not to be malignant.The operation was very complicated (lasted for 5 hours) and i had to stay in hospital for 11 days. The treatment that I received was excellent. When I was discharged I had to stay in London for a month to recover and get stronger. I remember that I felt depressed and kept on crying without any reason, had pain,could not walk for more than 5 metres, could not sleep, had hot flushes every 3 hours, had contipation the one day and diarhea the other. I felt that i would never be well again. But i did not give up, i started doing the exercises that the doctor gave me, twice a day, i forced my self to walk a little bit more every day. I stopped eating meat and switched to fish, salades, fruit and vegetables. I had support from my family who kept on encouraging my efforts. In May i flew back home. The flight was a bit difficult as it was 5 hours and i was afraid that i may get thrombosis (had to wear special socks). I returned back to work in June. By August I was enjoying the sea and the sun of the lovely greek island that I live , i was fit , i had no hot flushes, i lost the weight i gained.The only thing that reminded me of my hysterectomy was my 20cm scar on my tummy.
    What is my message ? Do not give up. Tell yourself that things will change . It does take time but they will eventually change. Get the support of a friend or a close relative or your children. Talk to them. Ask for their help. But remember you should believe in yourself that you can do it . YOU CAN

  6. Hi,
    I had a similar experience. I had a hysterectomy in 2011 due to an enormous fibroid, there was complications with the op so I was in surgery for longer than anticipated. The first 24 hours I was cared for but after that I was left to get on with it and left hospital on the 3rd day after my op having been on a ward on my own all afternoon and having no one come and check on me.
    Two years later I had to have a second op as I had large cyst on my ovary (I had kept ovaries as I was only 46 and they were ok) I had both ovaries removed and instead of being in hospital for the day I was in for 3 days (cyst had adhered to my bowel and bladder) I was told that as I was nearing menopause age I wouldn’t need HRT and that I would be fine! Within 24hrs I was ill, I had all 31 symptoms of menopause!! from terrible hot flushes, dry skin/hair sore /aching joints , painfully sore and dry vagina, exhaustion, to name but a few! I thought they would pass but a month later and it was worse and unbearable I had been told nothing of what to expect no follow up appointment , no after care what so ever. When I went to doctors a month later she was shocked. I was advised to take HRT as I was only 48 and menopause usually begins at 51/52 so it was perfectly safe for me to take it after all- she said my body had gone from producing hormones to nothing in 24 hours, which with a normal menopause would not happen, as your body gradually goes through this process over many years. I am appalled that there is no after care or advice for women who have surgical menopause. I feel there should be a surgery just for this as every woman will go through menopause whether it be surgical or not and the effects on the body are vast. I am now on a low dose of HRT but still find I am exhausted and have aching joints, I can no longer work. It has effected my life considerably but doctors have no time to help and discuss things. I am 49 but feel much older since op.

    1. So sorry to hear of your experiences, ladies…Have either of you thought about natural methods of alleviating the symptoms? I am 8 months on from a total abdominal hysterectomy due to the presence of early endometrial cancer. I was told that there wouldn’t be the choice of HRT after surgery because of the cancer risk involved,so I started looking into more natural remedies. Even before the surgery I had gone on to soya isolators (obtainable from health food shops) as I had unexplained joint pains which I had assumed to be perimenopause… it turned out to be rheumatoid arthritis, but I carried on with the soya, as I’d noticed that the few night sweats I’d had previously had disappeared. Having had the op,and being thrown into surgical menopause, all I had was a few hot flushes…probably 3 short ones in a day at the very most, and they passed in a minute or two…so, possibly I pre-empted the whole menopause thing, or possibly I was lucky. Now,eight months on, I haven’t noticed any flushes for over a few months. I take one red clover capsule a day,and am thinking of tailing off with that. Whilst I was going through all this, I read just about everything I could get my hands on with a view to self help…in my experience health professionals have little knowledge in non prescription remedies…all my knowledge was from my own research…I can well recommend Marylin Glenville’ s books on natural remedies..avoiding processed foods,and exercising as much as you can manage. Try not to think about what you can’t do and focus on what you CAN. No one can fully prepare you for what will happen- everyone’s experience is different..you can’t control what happens to you but you do have a control on how you deal with it!!!All the very best to you both!!!

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