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Please help us with our survey into the information needs of hysterectomy patients

The most common complaint we hear from women who are having a hysterectomy is that they have never been given enough information. We would like to change this experience and to do so we need YOUR help to tell us what your information needs are and how YOU would have liked to access information.

Taking this survey will also help us to provide input into the NHS to help them improve their information services for patients.

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It should take no more than about 2-3 minutes to complete and we will be eternally grateful for your input.

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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 65 Comments
  1. Gently increase the amount of walking you do. Just a few yards at a time – it really helps. And the risk of hernia is one that is affected by many different things, not just hysterectomy so although your risk following abdo surgery decreases, there may be other things that keep it the same.

  2. I am 7 days post op, had a total abdominal hysterectomy and found your site prior to my op. Reading the views of women scared me so much, I just dreaded the recovery. However, as I said I am 7 days post op and feeling quite well. I am moving about at a quicker pace and don’t mind doing the odd bit of housework. I tire quicker, but then I allow myself to rest. Keeping up with pain control is very important, also, eating lots of fruit helps with bowels. I’d like to know more about exercise and what I am allowed to do. Also, can anyone say if the risk of hernia decreases with time? Thank you

  3. It’s quite natural to be apprehensive Sue and you will be given follow up appointments for a few years yet. Hopefully though, you’ll continue to have clear years for many years to come πŸ™‚

  4. I have now gone ten months since my Full-Hysterectomy, and i still cannot get over the fact that i have had one except for the lovely scar down the middle of my tum! which is my life-saver scare. I have only had one blood-test and one visit to consultant as it is every 4 months, my next will be september. I am a little anxious as this is the month i decided to seek advice from my gp last year as i was in so much pain, from which i know now, was the growth and Ovarian Cancer. it was all clear and i await now with anxiety for next result. Is it possible for a return or is it just me worrying too much !
    susan. Should i still feel very apprehensive now, or is i

  5. I too had a trapped sciatic nerve 9 weeks post vh surgery (left leg pins & needles and lower back pain), but my GP told me it was unrelated to my surgery and was given strong ibufen… 5 weeks later p&n gone but back ache still here.

  6. It really depends Anita. It could be nerve damage which will heal, it might be a minor infection which would need some antibiotics or it could just be trauma from the surgery. I’d get your GP to rule out the infection at the very least though.

  7. I am 6 weeks now into having a hysterectomy for womb cancer. Although I was given a lot of written information about preparing for surgery and the operation was not prepared for what could happen after surgery. I suffered with a trapped sciatic nerve after my robotic vaginal hysterectomy and that was painful, normal gp confused it with constipation!!!! Am recovering well but I have a niggling dull pain in my right side, been to the doctors and I don’t have an infection is this pain normal will it go… Is it associated with nerve damage repair, gp couldn’t really answer my questions.
    Would like to know if anyone has had the same experience.
    Thanks
    Anita

  8. I felt that the hospital was extremely good in caring for me after my op in 2010. However my bladder became stressed and i was unable to wee naturally for 3 weeks. I had to go home with a cathetar and found it extremely distressing. I did not receive enough advice about this. My husband was my saviour as he supported and encouraged me back to full strength during those weeks, I could not have recovered so well without his help and continuous support.

  9. I had an abdominal hysterectomy 3 weeks ago. My husband is in the army and we are currently living in Germany so I had to have the surgery done there. The British medical centre on camp gave me very little information about the procedure and I will definitely recommend this website to them to give to other women.
    So far my recovery is going fine and this site has helped me with a lot of my questions. Thank you so much for a brilliant website.

  10. I received virtually no information at all either before or after my hysterectomy. If it wasn’t for this website I don’t know how I would have coped and without the information posted would probably have overdone things and set recovery back. Thank you so much.

  11. Your website has been a lifeline for me, I did not get very much info at all from the GP or hospital but your book 101 Handy Hints for a Happy Hysterectomy became my ‘bible’ even the name helped give me a positive outlook to what lay ahead. Thank you so very much πŸ™‚

  12. My hospital in Dorset included your website in their leaflet – it’s been the most useful source of info. Thank you.

  13. Have now got date for my total abdominal hysterectomy (two weeks) and using this website a lot, finding it very informative and supportive.Will be asking my sons to check it out too as I want them to be knowleagable about what to expect. So far they are more realistic about post op recovery than me.i wish all those waiting for their hysterectomies well and a good recovery. x

  14. I would just like to say this website has been a lifesaver. I had to have my total abdominal hysterectomy and bilateral ooperectomy at less than 3 weeks notice. I was not given any information by my GP or consultant as I was told I had to have the op urgently as they were concerned I had ovarian cancer. As I had not hit the menopause and indeed was still experiencing a normal, regular menstrual cycle and with no history of gynae problems this whole situation has been a total shock. HRT was mentioned but am now 5 weeks post-op and will find out about it at my 6 week check with my consultant. All the information I have (useful information) has been gathered myself and mostly through your organisation. I am really struggling to get my head round the situation I find myself in and the only consolation I can draw from this whole experience is I am thankfully cancer free and also I found this organisation/website. Thank you for stopping me losing my mind as well as my ovaries, tubes and uterus.

  15. That’s an excellent suggestion Mandy and a section on the blog is probably a great idea too πŸ™‚

  16. I ‘googled’ hysterectomy and stumbled across some u tube clips showing how each type of hysterectomy is done ans saw the actual operations being performed. It may seem a bit gruesome but it helped me to understand what I would be having done to my body and which ‘bits’ they were taking away if that makes any sense! Much better than having to try and read about it in a leaflet.

  17. You are very welcome Sue and I’m really pleased we’ve been able to help out a little too πŸ™‚

  18. I used your site before I had my op and it definitely prepared me better than any information provided by my GP or the hospital. I am now 4 weeks post op and feeling really well. Whenever I have had any niggly pains or questions I have gone straight to your site and each time I’ve found answers I needed. It’s almost as if you can read my mind! Thank you for such comprehensive information.

  19. You are very welcome Claire and I’m glad that the site has been able to help you both as I can’t imagine how it must be to make a decision like that.

  20. I had bought 2 books to help me through my hysterectomy and natural alternatives to HRT, but have found your site by far the most useful, informative, helpful and reassuring . My sister is having the same op soon we both decided to opt for it after been put at high risk of cervical and ovarian cancer. I have told her about your site and especially your brilliant forums. Thank you it has felt a lonely road some time with very conflicting advice.

  21. I am one of the respondents to the survey who is awaiting hysterectomy and whether I have vagtinal, or vaginal plus laparoscopy – or my consultant is mistaken (unlikely methinks) and I have to have abdominal depends on tests still outstanding. I think you need to add an “undetermined as yet” or “most likely” option to the questionnaire. I don’t like to say I don’t know, when I know what the options are depending on certain outcomes.

  22. Yay! that sounds like praise indeed and thank you so much for that most wonderful of compliments Louise, I can’t tell you how much they mean when they come in. πŸ™‚

  23. i have just completed the survey which lead to this forum. I think i may be one of the lucky ones who is feeling pretty good 3 weeks post total hysterectomy. HOWEVER i wouldnt be as sane, calm and reassured if i hadnt had the support from daily emails and the website for hysterectomy association. i definitely have not had enough info about how you feel both physically and emotionally post op. thank god for you. i agree with the other ladies info about this site should be given to everyone who has been told they are goingto have this op.
    i cant thank you enough

  24. I was literally given your leaflet as information as I was discharged without it I don’t know what I would have done. I really wish I had known about your site before hand. My experience has been absolutely awful at the hands of the consultants and I can only be thankful the actual nurses were as fabulous as they were because without them… I mean they quietly looked after my interests when the consultant attempted to discharge me 12 hours after operating (I was still hooked to the drip, catheter etc and hadn’t even stood up, used a toilet). That’s merely the tip of my sorry tale! Unimpressed with the service and treatment provided by the ‘experts’ is an understatement BUT I am alive, well and healing fast so I thank the NHS for that rather important outcome!

  25. hi 4 weeks post op.had subtotal. Abdominal. agree that there’s not enough information re the weird feelings that you get post op ie that your bits and pieces don’t feel like your own,every ones experience is different.had heamatoma,and had to have admission to hospital 5 days post op re pain to shoulder and back.have back injury,no one told me that I may experience problem s from surgery,my gp said that this is common problem ,back pain.I find that walking is ok but standing tends to make very thing feel dragggy.looking forward to feeling back to normal.

  26. Fantastic website and information centre! Love the daily emails – perfect for preparing & also for my now Day 3 post-op brain to cope with

    Would love to answer the survey, but can’t seem to find a link?

  27. I agree with so much of what has been said above. I was told that I needed a hysterectomy (removal of the womb) because of fibroids. During the pre-op I was told that I was having a total hysterectomy – removal womb and ovaries (and cervix presumably). To my mind that was a whole different thing and there seemed to be no reason for this change, except perhaps a mistake in the paperwork! I did get agreement that my ovaries wouldn’t be removed unless necessary but I really didnt need the additional stress at that moment in time! – no time for discussion of the effects of removing ovaries, menopause, HRT etc. – and no post-op to say what was actually done!
    Once out of hospital that is it, you are on your own! Luckily during the first week after my operation I stumbled across your website – it has given me so much reassurance, the daily emails are a great support. I really wish that I had found it before my op – a shame that my GP didnt know/think to referred me to it. Thanks so much for your great work.

  28. My husband sent me a link to this website after I found out I had to have a hysterectomy. I have received lots of good, common sense advice that I would have got stressed about! Its a step by step guide to having a hysterectomy, even before I go in. I have another week to go before I have the operation, and will be on here again once it is all over and done with! Thank you very much for your good advice!

  29. I like other ladies have found your website most helpful and very informative. I wish I had found it prior to my vaginal hysterectomy/repair as I feel it would have made me better prepared for the operation and its after effects.
    Thank you Linda

  30. We always love to have new members of the forums Barbara and good luck, we’ll keep our fingers crossed for you in October.

  31. Just been told im to have the hysterectomy op early October … thought it best to get as much information as possible proir to the op
    The website was great and just received the 101 Handy Hints book ..read it in one go !!!
    think i will keep in contact with the site and maybe join the forum too
    Thanks
    Barbara x

  32. I agree with Angie, I was given 101 Handy Hints book by a friend of my daughter. It is very helpful & I keep reading it to make sure I’m not missing anything. I also will be having a bowel & bladder repair. I was given information about the bladder repair procedure from the hospital but not the bowel repair so I looked it up on the Internet & found the information I needed. My op is on 19th Sept. Thank you Linda for all your helpful information you are an Angel in disguise, best wishes Gwen xx

  33. I highly recommend the book ‘101 hints for a happy hysterectomy’, I found it really helped me and took care of everything, especially if you are trying to be organised leading up to surgery and have little niggly worries, you can say to yourself, everything I need is in the book in black and white to browse through before and after. Lots of helpful info for every step of the journey and of course the website too.

  34. your help and advice has been invaluable. After my hysterectomy I was so depressed that I searched the web and found your site. I had found a friend, your daily emails helped so much I realised how much I really didn’t know and wasn’t told.
    I suffer with menaupause symptoms and still am not on HRT with the information from your site I feel more confident to approach my GP.
    Thanks you so much.

  35. Find the website a great help and support.
    I’ve just answered the questions for the ‘Information Needs of Hysterectomy Patients’ survey and had a problem with the question about ‘type of hysterectomy’. Mine did not fit any of the categories so I couldn’t answer that question.
    Thanks for all the information on the site.

  36. I had a planned c-section after being soo ill throughout my pregancy. I kept telling the doctors something is not right I feel soo ill but they just did not listen. I had my son on the 4th December 2008 I saw him being born and ended up having a full hysterectomy because the Plecenta had grown into the uterus and when the doctors tried to take it out they could not stop the bleeding otherwise I would have bleed to death. I am thankful they save my life but I have not had much emotional support from anyone and am on HRT. I do feel there should be more support for young women as I have not found any groups in my area where I can go to for support. I am 37 and do feel like no one understands how I feel and never will unless they go through the same experience as me. Even after 2 years I am still trying to come to terms with everything.

  37. I can only say I wish I had found you sooner. At 10 months post op this site is still a fab support. I had a hysterectomy post childbirth as I continued to bleed after my emergency caesarean section. If the doctors and midwives had bothered to give me some information on how I would be feeling and even what surgery they had done to my body then I wouldnt have ended up with post traumatic stress and admitted to a mental hospital for a week when I should have been at home with my baby and family at what should have been the happiest time of my life. Instead they shattered my life into pieces and left me to pick up the pieces. I hope nobody has to suffer like I did and I hope that this charity is made more available to young women like me.

  38. When I was told that a total abdominal hysterectomy is the only solution left to help my problem I was very, very emotional,scared even .When my consultant asked me if I had any questions for her I went totally blank. So after finding your site I am feeling more at ease about the whole thing not just the operation but what happens after .I love the emails every day I find it very reasuring and that there is others out there also just as confused and worried as me. I will tell my GP and consultant about your site Thankyou so much

    jayne

  39. dear me, think i need to go get my eyes tested or ask them to do something with my fat fingers lol sorry, just read that back and seen all the wrong keys i have hit. :-0 sorrrry

  40. I have just found ouyt about my operation and found your sire by pure chance, can only say one thing. Its a god send, when i go in for my operation am intending to tell both my consultant and the staff so they can pass it on to other people in the ward. That combined with my continual talking about how good it is, how you can get any question answered well, what can i say πŸ™‚

  41. Am going in for a hysterectomy tomorrow 17th nov am very nervous
    But keep reading back through things on your website .
    Should I be feeling this nervous ?

  42. I only wish I’d known about this site before my op 4 wks ago! I was given a leaflet at hospital with the website on but have been recovering at my mum’s until a couple of days ago with no computer access! Brilliant site, I’ll be a regular visitor!

  43. Hi Donna. We are trying to find funding to produce those very leaflets at the moment, with any luck we may be able to get them for next year. Thanks so much for your lovely comment as well – it’s a pleasure to help. πŸ™‚

  44. I agree with Gail. This website has been invaluable for me since my operation. I think you should contact all the hospitals and ask them to recommend it in their leaflets.

  45. Your website has been the most helpful in helping me prepare for my forthcoming hysterectomy. Thanks.

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