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.
It should take no more than about 6 -10 minutes to complete and we will be eternally grateful for your input.
Your website has been the most helpful in helping me prepare for my forthcoming hysterectomy. Thanks.
Gosh, thanks so much Gail. That is praise indeed. x
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.
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.
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!
Gosh thanks for the commendation Rachel. I’m so pleased to hear that the hospital leaflet included our details too
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 ?
It’s perfectly normal to feel nervous Claire and I do hope the op went well.
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
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
LOL
– no worries at all, I understood every word.
Why thank you kindly Julie, it’s always a pleasure to read such lovely comments and I’m just glad we’ve been able to help too.
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
thanks so much for the lovely feedback Jayne and helping women feel better about whatever decision they make is why we are here
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.
It sounds like you’ve had quite an experience Laura and I’m really pleased we’ve been able to be there to help you through such a traumatic experience. Linda
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.
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.
That’s interesting, what type of hysterectomy did you have Irene?
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.
You are very welcome Sue, I’m really pleased we’ve been able to be that ‘friend’ you needed
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.
What a lovely comment and thank you Angie, I’m so pleased to hear that you’ve found 101 Handy Hints helpful.
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
You are very welcome Gwen – I’m glad it helped
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
We always love to have new members of the forums Barbara and good luck, we’ll keep our fingers crossed for you in October.
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
You’re very welcome Margaret – glad to help out
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!
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.
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.
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?
Hi Alison, thanks for the lovely comments and glad you like the emails and ‘ere tis the link to our survey: http://www.hysterectomy-association.org.uk/index.php/welcome/wed-love-your-feedback/
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!