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My total abdominal hysterectomy and bilateral salpingo oophorectomy – Joon’s story

At the end of July 2015 I had a total abdominal hysterectomy and bilateral salpingo oophorectomy. I was forty eight years old and this is my story.

I was in my mid to late twenties, a mum, wife and total rock concert fan, life was great. Then my periods became “different” at one stage actually stopped for around nine to ten months. My GP told me I had no eggs! However, two years on we got our longed for special delivery, a son. After his birth my periods were normal just a bit heavier.

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The years flew by and I found myself aged thirty eight, how the heck did that happen? My periods again became “different” much heavier, longer and very painful. My GP told me this was normal and not to worry so I carried on as you do. Then one night, I remember it like it was yesterday, I flooded in work, it actually terrified me and from that horrible day on things went from bad to worse. Our lives seemed to stop. We could not make plans to go out, book a holiday, do a big shop, infact have a life due to my excessive bleeding.

I had to leave my job for one with less hours but in the end I had to give up work altogether as I was so weak I could hardly stand, probably due to all the flooding. I ended up on iron and tranexamic acid which I have to say did nothing for me. I then agreed to the mirena coil, this was a mistake as it made things worse, so from it being inserted in 2010 to 2015 I bled constantly every day and was passing clots the size of a fist, it was so painful, off the scale.

My GP was reluctant to remove the coil so I was stuck with it. Having GPs, five in total telling me this was normal for a woman my age infuriated me as it was at every visit. My husband and I actually took a menopause book in and explained that I had none of the symptoms! By now I was on eight tranexamic acid pills, iron and three mefanamic acid pills per day every day. The pain was like childbirth, I was using forty pads plus tampons per day, I was housebound and becoming really ill. My body hair stopped growing, I could not for the life of me concentrate and I believe I was a complete bitch to my husband and son, always nagging on about nothing. I could not sleep as blood would seep everywhere, I was trying to sleep on waterproof sheeting and bath towels, the same on my sofa. I was telling my GP there were no pads or tampons large enough to take the flow, I needed pillows! By this time I was using incontinence pads. I was getting through loads of sanitary products, my son would even buy big pads if he saw them on offer when he was shopping, the same went for my husband. My spare bedroom was like a Sanitary Dungeon! I explained to my GP that taking a shower was quite an experience; I would get ready by using the biggest absorbency tampons I could buy, get in the shower but in minutes blood would be washing down my legs and I would be pushing clots down the plug hole with my foot! Getting out was horrendous too always an old towel ready to shove between my legs so I could dry myself. All normal menopause symptoms I kept being told by the “professionals” Anyway I am sure you get the picture.

By February 2015 I was so poorly but still being told it was menopause. Then in March 2015 I started with a new symptom a sort of nipping, scratching, tearing pain in my right side. By now my GP realised something was wrong HURAH!! Things were really bad by now. I was actually examined, the coil removed and I was booked in pronto for a scan. I got my scan quick and a huge fibroid was found it was so big the probe for an internal examination could not be used. So, this was the awful pressure I was experiencing and this was why my tummy was huge. Menopause my botty!

Moving on I got in to see a consultant gynaecologist end of May 2015 and after years of hell within minutes I was told I needed a hysterectomy. I cried out with not fear but relief. I had a biopsy done there and then, all clear thankfully. We could not believe someone had listened. By this time I was having recurrent nightmares of actually drowning in lakes of blood and being, wait for it, a giant tampon….yikes!

I got in for my op July 31st 2015 I had a few dates cancelled due to ladies being diagnosed with cancers so of course these ladies took priority. The run up to the op was difficult and frightening, I felt like i wanted to push when I stood up, like in childbirth and the pain was unbearable. I could not sit for long as it hurt my noo noo. I could not walk, it was really frightening but I knew there was light at the end of the tunnel and kept upbeat and smiley, like you do.

July 31st came WAHOOOO! Off we went to the hospital. I saw my surgeons people etc was given my lovely surgical stockings and put on my delightful hospital gown hahaha! My poor husband looked worried to death but I gave him a huge cuddle, told him I loved him and gave him one of my crazy grins. I almost danced to theatre. I did lose my nerve once I saw the scrubs but only for a couple of minutes I then climbed on the bed and was put to sleep beautifully.

I woke up as calm as I had gone to sleep, I was positive and smiley as usual. I was however violently sick with the morphine but once off it I was totally OK. This was not anywhere near as bad as we thought it would be. I had a catheter for twenty four hours as soon as this was removed I showered and washed my hair, I was pretty weak mind. The only pain relief I needed was paracetamol. My back felt numb on day two but soon recovered. I left on day four. I was really out of it for a few days when I got home and lost three days hahaha it was a struggle for maybe a week, the bed, the sofa, the shower and you really cannot even make a cuppa (my son bought me a camping kettle at week six) Please listen to your body, it will so let you know when you are doing too much.

I am now eight months on, happy as Larry, life is great!

I will not lie it has been a tough eight months and my tummy is still sore, not the incision site, the tummy above, muscle I guess and the swelly belly has just stopped in last month or so. I did have insomnia for six months which was horrible but I just kept positive. I went into menopause immediately but that is not that bad either the hot flashes only last minutes (for me anyway) and are not everyday and are improving as is the old tummy, by the way the scar is almost invisible already, a beautiful job. I refused HRT and asked for fluoxitine (after research) I take only one per day and they work. I have also had severe joint pain and aches and pains along with extreme tiredness BUT ALL are now improving. Life is tremendous, I had actually forgotten how tremendous it is! My family say I am a changed woman. My husband says he has his NORMAL wife back hahaha It really is madness, I am so relaxed now, that has taken some getting used to as my life was just pain, blood and pads! My husband says I did not know which way to turn, I was an emotional wreck. I sometimes wonder how my husband is still here as we have had no sex life in years. He is one in a million a proper diamond ( I am a little scared about sex and still he waits )

So, ladies I have my life back. Life is marvellous, I am so happy I cannot tell you. I can even visit my family.

I did put weight on after my op but in the last couple of months I have lost a stone and I am not on any kind of a diet, obviously this is sorting itself out too and my waist is back, yabba dabba doodle doo!

If any lady is reading this and having doubts I would just like to say go for it girl, what have you got to lose. My life was horrendous and now it is totally fabulous, I feel it getting better everyday. It is the best thing I could have done for myself and my family.

One last thing I would recommend a belly band and then later on soft support panties to support your beautiful tummy.

Good luck girls. I am proud to be a Hystersister!

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in my own words book coverIn 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.

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Linda Parkinson-Hardman

Transformational coach and founder of the Hysterectomy Association. Professionally I'm an information scientist who specialises in the adoption and engagement of digital technologies. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

This Post Has 31 Comments
  1. ah ok this may have helped me identify the cause of my issues. I think i may have done too much too soon. the surgeon said walk – 3 wees after the op I was doing 10k some days. (darn you Pokemon Go lol) but yes – walking, looking after yourself … that helps I’m sure. irrespective of how long my recovery take I know I have avoided losing my bladder and a kidney due to the pressure in there – and I know I can’t get cancer in any of the girlie bits because they are gone. I still have issues while I am recovering but thankfully my sexy bits are working just fine! so whatever the surgery brings I say go for it. eventually it will pay off and it’s ok to deal with in the mean time

  2. go for it – initial recovery is fast, back to work is soon, for me 8 weeks though maybe I should have taken a bit longer. just bear with the next few months. that’s slow so be careful – remember you are not wonder woman 🙂 after that it’s going to be magic

  3. oh and by the way despte all that I do already feel like a new woman. Would never suggest someone didn’t go ahead if they needed this op. once it’s settled, will be amazing and the worst of the recovery in the early days is very fast – almost miraculous

  4. I had mine in Aug 2016, the fibroids were massive – the biggest one was 5kgs. the op went well and the prognosis is good

    My swelling has suddenly got worse this week however, and I’m suddenly getting severe pain that I can’t walk off, it’s like badly pulled muscles and there’s a long lump appeared above my scar. the doctor had done an internal exam, says all ok, and has checked for bladder and other infections -all clear. so why has the pain and swelling got worse? I hope it’s all just normal for this kind of surgery, especially as I know my bladder etc were rather crushed by the giant fibroids. I am going again to see my doctor on 29th but I feel like I may be wasting their time. I just need to know if this is normal. Having red this story I guess it may well be as 4 months isn’t long really but people keep saying I should be fine now as “it was just a hysterectomy” and I’m starting to feel like people don’t believe me. I know it will be fine eventually but hearing from others here has reassured me somewhat.

  5. Hi Gwen I too like yourself was told I had atypical hyperplasia and am having to have have a full hysterectomy and bilateral-salpingo-oophorectomy to remove both my ovaries and fallopian tubes I must say im not looking forward to the operation I got the results on the 24th october and two days later had to have a mri scan this showed a mass beneath my stomach I have got my date through for my operation all been well i be having it done on the 14th of december then two weeks after I shall find out if I got the all clear. Hope your op went well and you were not in too much pain

  6. I’m waiting to have surgery i have fibroids on my uterus they are big I’m afraid and i feel depress about it i don’t know i can do it need help thanks

  7. I had a full hysterectomy last October,gained 2stone,me and my partner are like strangers,sick of being tired and depressed.wished I’d never had it done.its destroyed my life.

  8. Can anybody advise me please! I had a full hysterectomy on 30th June this year. My consultant told me it was a very big operation as I had a lot of scar tissue that had to be removed first ( this was caused due to my two children being delivered my a C section). Tomorrow (22nd August) will be 12 weeks since the op. I have being going along nicely and making good progress. My consultant advised me to stay off from work for 3 months (I was due to go back to work on 3rd October). For the last couple of weeks I have been experiencing aches in my joints and when I have sat down for any length of time my groins feel like they have seized up and my husband said I am walking like an old lady (I am 46 by the way). My stomach is very sore too. I went to see my GP yesterday to explain what I was experiencing, so she examined my stomach. She said she felt some lumps and bumps which she is slightly concerned about. She said it could be just swelling or it could be wound complications! She has now signed me off from work for another month and is going to be referring me back to my consultant. I’m not sure if these aches and pains are normal and was wondering if any other hyster sisters have experienced what I am at present. (I have just read Lesley’s blog and love the “hyster sisters” quote).

  9. Hi all
    I had a totsl hysterectomy over three years ago, thanks to a medicine ball sized ovarian cyst. I am on HRT as my hot flushes were unbearable, my scar is horrible and I am self conscious about it… However… I am so much happier than I was. My periods were erratic from day one of puberty. Now I have no worries in that department and can live a normal if slightly changed life. Feel less feminine? None of it. I have had more comments from people positively about my looks than ever. A happier and healthier me shines through. Good luck. Join the hyster sisters!

  10. i had my op the 12th August 2016, full hysterectomy – vaginal extraction. was very sick on the morphine, but the pain is actually 10% of what i was experiencing with periods, cysts, fibroids and endometriosis…. i am glad i did it after 40 years of problems, tiredness is the worse thing to deal with and a little depression but that is manageable, just change what you are doing and get someone to take you out for a coffee and change of scenery.

  11. Hi Julie, I have my op on the 13th Sep, I too am dreading it, hope I can share my experience with you when it’s over, my stomach is in knots , just wish it was over & done with.

  12. Hi everyone, I am due to go for my op on the 13th Sep , I have atipical hyperplasia , I’m so dreading the spinal & the after effects of the op, can anybody share there experience with me, so far I have read all the comments & a lot of people are saying it’s the best thing ever, I feel so nervous.

  13. Hi everyone your stories have given me a lot of hope, I am due to go for my op 21st sep which I definitely was not looking forward too, luckily I have a holiday a week before 3 days after home for my op, I think more than anything I’m scared of the pain but I guess every one is different so will be interesting to see how I feel.

  14. I’m booked for my tah and oophrectomy in October. I’m absolutely petrified! I am a nurse-I have seen the surgery performed and have nursed the post op gynae patients so I know what’s coming!!! My fear in life is anaesthesia……thankyou all for posting your experiences….this site is invaluable!

  15. I am 44 and had a TAH plus removal of left ovary (due to grapefruit and golf ball size fibroids) on 20/7/2016. I got home 3 days later.
    So far I am recovering very well. I’m frustrated at not being allowed to do anything but know it’s in my best interest.
    I’m managing to shower, wash my hair and get dressed each day (even if until today it was just into clean pyjamas!). Today, 6 days post op, I’ve managed 3 very short walks. I wanted to walk further but my body said no and I had no choice but to listen to it.
    My mood has been a bit up and down and there have been tears. I’ve been honest with my husband and kids and their support has been invaluable as has this site.
    I am so grateful to everyone for their advice and honesty. It has helped me immensely.

  16. Hi there I had my total hysterectomy and bilateral salpingo-oopherectony 17 days ago and although I am in some discomfort I would totally recommend the operation. It is much easier than the discomfort of having 16-week fibroids forever. I am 42 and am wondering if I am managing well due to being relatively young. I wasn’t massively fit or unfit prior to the operation except for the fibroids. The main thing I have learned from others is to listen to your body as it will soon tell you if you have done too much. I am resting loads and feel fortunate that I am able to do so without worrying about work. I wish you all well with your operations and hope you find all the advice you need on this site – I have! It has been invaluable.

  17. Hi Frances! Firstly sorry for late reply I was shocked to see my story printed just now hahaha My advice is to eat small and often and not all fibre stuff; let your bowels recover and wake up. It takes a while. Peppermint cordial is fantastic for the wind!! Good luck and happy recovery!!

  18. Hello! I am now taking vit D for acting joints, thank you for taking the time to read my story.
    Joon

  19. Hello! I am now taking vit D for acting joints, thank you for taking the time to read my story.
    Joon

  20. I’ve just taken a look on here! Never imagined my story would be printed hahaha THANK YOU Eileen for your kind words.

    Life is fantastic!!

  21. Hope you went for it. I too had theop TAH 4 weeks ago – it has already changed my life for the better.

  22. I had my subtotal abdominal hysterectomy on Saturday 18th June 2016.

    I feel I have been very lucky compared with some, while I had a large fibroid I was pretty healthy and fit prior to the operation – I had no bleeding due to a Merina coil and my main symptoms were the constant discomfort/pressure in my abdomen and the constant need to urinate (the fibroid pressed on my bladder). My abdomen also protruded and my clothes had started not fitting properly.

    I had a month’s notice of the date of my operation and gave up drinking alcohol, improved my diet (which was already fairly good) and tried to exercise as much as possible prior to the operation. I started pelvic floor exercises and walked as much as possible.

    The operation went well (taking about 50 mins) and my 18 week sized uterus and fibroid were removed. I had IV morphine and fluids and a catheter for the first two days. I walked for the first time on the Sunday evening – I tried in the afternoon but felt too sick to get further than sitting upright. After the drips came out I came on leaps and bounds and walked further each day – I was discharged on the Wednesday morning.

    Although I was tired I have been amazed at how much I have been able to do. From my first day at home I made my own cups of tea and small meals (salads mainly). I put the washing on and hung it up (one piece at a time).

    It is now 19 days after my operation and I am walking twice a day for 20-30 mins, cooking small (hot meals) and generally quite mobile round the house. I have not attempted to clean, hoover or drive but can do most things round the house (Tesco deliver food). I live on my own and had a carer come in of the first week or so to clean and change the bed etc.

    For me the worst thing has been the mixture of constipation/diarrhea caused by the morphine/painkillers and the antibiotics. (I was on antibiotics before my operation and am also a coeliac). My bowels have reacted poorly to the op and unlike other things I have no control over this aspect (despite eating lots of fibre) – so if I am tired I lie down and rest or don’t go for a walk but if I have go to the toilet I have to go (and my muscles move of their ow accord) !

    I had a little vaginal bleeding in the first day or so after the operation but it was light and stopped quickly so I was surprised when my internal stitches started to dissolve and it started again about 3 days ago (very light and sparse but no one warned me).

    However, overall I am doing very well and am really pleased with how things have gone. My abdomen is noticeably flatter (even if still a little swollen) and I no longer need to urinate every hour – hurray- and I am not in pain. While it will be several more weeks until I am back at work I feel a positive attitude and being as fit as I could be beforehand have helped.

    While we are all individuals, and everyones experience is different and very personal to them, I just wanted to let others know that it isn’t always traumatic and recovery can be quite quick and relatively painless. If you need a hysterectomy and are worried about it then don’t be, go ahead and start the rest of your life. Good luck.

  23. Hi, I’m finding it hard to collect any info on dietry food, as had my full hys 5days ago, out today..yeah!! Wind factor painful, any advice please

  24. What a relief it must be for you now!!- im having a tah on mon-TOMMOROW!-I have to admit im bricking it!- i already have ms so my mobility is on crutches and has been for the last 12 mnths so its worrying me that my mobility will be worse afterwards! I live alone so no1 to make me a brew(boo hoo) im a 45 yr old scaredy cat! Too late now its happening but the stories on here are inspirational! Thanks ladies! X

  25. Hi and thanks for your story, I am on the decision see saw at the minute as have large fibroids and am also thinking I own shares in incontinence pads companies as they are the only thing big enough to cover the flood!

    I have to make the decision by tuesday as to the complete hysterectomy but am concerned about the afterwards and what happens so thank you for being so honest about what you went through.

  26. Thank you for sharing your experiences. I too had a TAH with DOS last November. Re your aching joints and tiredness, have you had your vitamin D levels checked? I had similar feelings and my GP found I had very low vit D levels which have been helped by supplements.

    Can totally identify with the wonderful relief after recovery!

  27. Hi Joon. I am utterly appalled that it took so long for a hysterectomy to be recommended! You suffered for such an unnecessarily long time. (Let me guess – were all those GPs that you saw male GPs??) I’m speechless at your story. An earlier hysterectomy could have saved you (and your family) all that misery.

    I sincerely wish you and your husband all the best for a very happy future, I bet you both feel like you’ve been born again! I too had a total abdominal hysterectomy and bilateral salpingo oophorectomy (April 2015) but my background was nowhere near as bad as yours!

    Take care and enjoy your life! Love from Eileen xx

  28. Hi Beverley
    Thanks for your story i too am struggling with heavy painful periods and fibroides obviously not as extreme as yours but have been suffering with pain and feel i dont have a life finally have been offered a full abdominal hysterectomy on 18 week wIting list , im ner ous but your story has made me feel more hopeful that it might be the best decision i make too

  29. Amazing survivor’s story with a happy ending.
    Life is beautiful but pain and heartache certainly isn’t.

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