How many women will it take to change the world?

This might seem like a strange question to ask on a website about hysterectomy but, in fact, it’s highly appropriate. When I founded the Hysterectomy Association over 15 years ago the biggest complaint that most women had about their experience was the lack of information to help them make an ‘informed choice’ about their health and their bodies.

It is a sad, but true, fact that this complaint is STILL the most common one made by women. In the original research I talked about the NHS here in the UK and their commitment through what is called ‘The Patient’s Charter’ to ensure that everyone could give truly informed consent to the treatments that are offered by their medical practitioners.

However, in practice this rarely happens. Medical practitioners don’t have the time to ensure that we have the information we need in order to make those decisions. And yet, knowing that the one we eventually take is the right one for us – not for someone else, but for us as an individual – is absolutely paramount and has been shown to have a tangible impact on how well we recover and cope with whatever treatment we eventually decide upon.

Compounding this problem is the apparent divide that still exists that prevents many of us asking questions of those we perceive to be an ‘expert’. In other words, too many women still feel that they don’t want to appear stupid or silly or concerned when their medical advisor’s are offering a particular course of treatment or surgical intervention.

If there were one thing I would wish for all women undergoing a hysterectomy, it would be that they had enough information at the outset to ask the right questions that ensure the decision they make about their health is the right one for them, specifically.

My aim has always been to challenge these views, to ensure that women have that information and are confident enough to ask the questions they need to. The problem is that too many women find us after the fact – they have already had their surgery and are now trying to shoehorn the information they get into their post operative experience.

So, I’d like to repeat that question – how many women will it take to change the world?

You can answer the question here, by leaving a comment below and between us we will, and can, change the world.

Leave a Reply


  1. HI Elen, I’m so sorry to hear that you’ve had such problems with your health post op and I don’t really know what to say to offer you some hope. Time does heal eventually but how much is dependent on the individual unfortunately.

  2. I too wish i could go back and ask those questions. I am still suffering daily from a total hysterectomy i had in 2o10. Before my op despite bleeding heavily and wetting myself due to a huge fibroid i was still full of life and in my head felt 21. I am now 54. I work as a nursery teacher and up to my op thought nothing of doing two school trips in one day. Now i have pain in my hips, shoulders , hands , cold flashes, hot flushes -despite now taking HRT which i stupidly refused at first because again nobody explained to me the severity of a total hysterectomy and what would happen to my body. I was on cloud 9 for four months -after 8 weeks I was walking the hills again. After 4 months the hormone finally ran out and with no ovaries i hit a wall. I thought i had MS-my legs gave way. My bones ached so much i had to lie on a bean bag and i had terrible anxiety. I couldn’t walk briskly across the playground without every bone in my spine feeling as if nothing was cushioning them. I was used to taking 90 children and their parents to the seaside. Now I couln’t talk to a neighbour over the fence. With the help of pregablin i had some relief from the pain and anxiety but this then led to depression when i tried to come off it. Now on HRT and testosterone I have some relief but still suffer the symptoms i mentioned at the beginning but not as severe as the intial pain.. I have had brain scans, full body bone scans and just about any other intervention you can think of. Until i saw a gyne in Harley Street i was considered a mental case-my doctor had no idea what to do for me and said I had GAD! I continue to work part time and have never given up for the sake of my family-I have spent money I do not have trying every treatment under the sun!!! I say to everyone if you have to have a hysterectomy don’t let them take your ovaries-I was talked into taking my cervix as well. My husband has been amazing but two years later i feel less than half the person I was, my career has been ruined. I also have problems with my eyes some caused by the medication I was put on and some by the lack of oestrogen. I keep on trying and have never given up walking. I have recently got back to the gym but my shoulders and hands have got worse. I felt when things went wrong nobody knew what to do. Before this I maybe went to the doctors 4 times in 30 years. When there are no easy answers doctors treat you as a mental case. I tried an anti depressent but i was later told i was started on too high a dose. I felt mad for a month and then came off . Pregablin helped but i had to come off because my eye consultant said it was harming my eyes. I have now been diagnosed with narrow angels as well so there are few medications available to me. Before my op I had never needed to take a pill in my life-yes i know i was very lucky! Without my family to keep me going and the bits of my job i have managed to cling on to they might as well have cut my heart out whilst they were at it! Your body is dependent on hormone. A normal menopause has ovaries supporting it for 16 years or more-my mum had no problems. I feel my life stopped four months after the op and i am basically keeping going for everyone else. Apart from my body it destroyed my mind. The surgeon did a good op and my scar is fantastic but he didn’t prepare me for what was to come. He signed me off and i was still well and full of life thanks to the hormone that was still at that point in my body.Thankfully i am not anxious anymore but i am in constant pain and feel i have no control over my body. Negative you may think but sadly true-anyone who knew me before can’t believe the change.

  3. Your experience is common Anne which is sad – if we were all the same we’d all have the same outcomes … which we don’t! Mind you, at least you get the printed generic info, many women don’t get that!

  4. I think you’ve hit the nail on the head Rosemary – we don’t know what we don’t know and need help and guidance to ask the right questions, it seems that if some help were put into dealing with this conundrum then we’d all be much happier along the way 🙂

  5. Very good comment Linda, I was so ill and had bleeding for 6 years on and off, I was glad to have anything done to take it away so, didn’t ask any questions,but now regret not doing as the total Hysterectomy has had such an impact on me mentally and physically, I dont know what i would have done without your website to answer questions and to be reassured I wasn’t on my own post surgery, many thanks for all your very valuable information and your booklet is fantastic!! lots of love Rosemary XX

  6. The NHS seems to think it is addressing the problem of lack of information, but I am not convinced about the way they are doing it. My GP (who happens to be a woman, but I’m not sure it makes a difference) now seems to spend half of any appointment (which are short enough to begin with) printing off generalised information for me to take home and read, whereas what I actually want is someone who has the time to listen to me and address my individual concerns. So I’m afraid I can’t answer your question, but think it’s a good one to ask!