Illegal Post Pregnancy Hysterectomy after Elective Caesarean from England

(Total Abdominal Hysterectomy and Vaginal damage)

This a summary, the actual account is about 33 pages long (not double spaced as one person asked :->)

I wanted a home birth but my doctor was set against it. I had had bad experiences with gynaecologists and I also felt that I wanted the experience to be private, amongst other things. My pregnancy was 'normal' so there was no reason why I could not have a home birth. The more I read and found out, the more I was convinced that I wanted a home birth. A home birth was organised with the midwives.

Once I finished work I decided that I wanted another scan as the last was at 20 weeks and there wasn't another one booked. After working my way around the 'red tape' I was able to have a scan. Obviously putting the mind of mum to rest was not that important to the people I was dealing with. They discovered that the baby's head was ok but the other measurements were off the scale.

I was seen by the obstetrician and he explained that they were predicting the baby to be over 8lb 13oz (4 kg). As a result they were worried about shoulder dystocia. I asked for ‘more information to make an informed decision’ but he was vague. He did, to his credit, point out that the delivery may be fine with no problems, but he didn't really want me to have it at home. He made me promise to come back in two weeks for another scan.

A midwife was sent in to talk to me. I asked for some information to take home to read so that I could make ‘an informed decision’, but was told there was none. She asked what I wanted to know. (How could I honestly answer that - it's like asking the average person which part of quantum physics don't they understand!!). What the midwife had told me was that she had been to 2 shoulder dystocia births. One had been ok, the other fatal. For me as a lay person that put my risk factor at 50%.

I did not have that much confidence in the midwives as I had not been able to build up a relationship with one as I had never seen the same one twice! I had also asked earlier in the pregnancy, if any of the team were trained to deal with a breech birth at home, the reply was that I would be in hospital for that. When I asked why, as it was not always necessary I was told that it was best not to learn about things for myself and do what I was advised. I was not impressed. I also read up on caesarean sections. They said it was safe. The Health Authority book said they were safe. Everything I found said they were safe.

Two weeks later I went back for another scan. The baby had grown. The midwife had visited me in between and said that the supervisor of midwives would not allow me a home birth. I told her I would have a home birth or a caesarean. I did not want control taken from me, as I believed it would be in hospital. I have a needle phobia so the idea of a caesarean was very difficult. I also felt that if I stayed at home I would be sent a midwife who would not be helpful / supportive at home, but who would make the experience unpleasant and keep insisting on transferring into hospital, probably even trying to use my husband against me. I also felt that they would have only refused a home delivery if they were aware that it was a dangerous position for me to be in. Bearing in mind that midwives are there for the MOTHER and baby not the doctors. Or so I had been lead to believe.

Two weeks later I went back to the hospital, a different obstetrician saw me. Our baby had grown 2 weeks in 2 weeks. I was made fully aware that if I tried to birth the baby myself ‘you will undoubtedly kill the baby and possibly yourself as well’. I was also warned that the labour would be very long and very painful. I still wanted a home birth but it had been slipping away from me over the last two weeks. I had not wanted a hospital delivery as I did not want to be in a hospital delivery room. Compared to home I felt the rooms were barbaric and I would not have control of the situation. I had previously asked how a hospital delivery would be safer than a home delivery they could not back it up. As the baby had grown 2 weeks in 2 weeks they did not think it was now a possibility that everything would be all right with a birth hence the previous warning. The reason that I had been told earlier that things may be alright as they had hoped our baby’s growth would have slowed. He said I had made the right decision. They did not want me at home; my only other choice was a hospital birth, with one of us dying. The caesarean was safe he said - the only risks had been due to the anaesthetics - and nowadays was safer due to better anaesthetics.

During the weekend I wanted to back out of the caesarean however I could not, as I did not want to kill our baby.

I did not sleep that last night, I just stayed downstairs and watched television.

The caesarean was booked and I went in. I was crying before, during and after I got there, needles, catheter, possible drain. The midwife was wonderful. I felt ok when the anaesthetist spoke to me, dreaded it but ok. I opted for the spinal block as I was adamant I wanted my husband there (he would not be allowed in if I had a general anaesthetic).

I **screamed** through the needles. This is NOT an exaggeration.

I was refused immediate skin to skin contact with our son as the tent was in the way (On my notes it doesn't give a reason).

(On my notes it says the reason for the c/s was mothers choice. My husband and I do not believe that telling someone that that will kill their baby by delivering him vaginally to be their choice.)

I had my baby early in the morning. About 6 pm the bleeding wouldn't stop. The midwife kept going to the doctor saying that it wasn't right. They eventually told us I was going back into theatre.

My husband asked if I was going to die and was told NO. I said that a hysterectomy was not an option at any time. Even in that state, I was concerned of the 'if in doubt take it out' philosophy. We were told NO, NO, NO that our concerns were unfounded, that it was an exploratory operation only, and that they were only expecting a pool of blood, a couple of stitches. We were treated as if we were over-reacting. When my husband left they had me sign another consent form which I couldn't read by this point, it was blurred. I only signed where they pointed.

I was asked about my religious beliefs regarding transfusions as they guessed I had lost about 2 units of blood. I said no to a blood transfusion.

(My husband had been left in a room, with our child with NO update, my husband thought I may have died. A doctor finally came in dresed in a shirt and trousers, and told my husband that I was alright bar blar blar, by the way we have given her a hysterectomy.!!!!! I mention how he was dressed as some people beleive that IF he had undertaken surgery as the hospital SOMETIMES claim he would have arrived in greens.)

When I came round they had given me a TOTAL hysterectomy (uterus and cervix and vaginal damage). I think you can guess what state I was in. At this point we did not know about my cervix as they only said that they had removed my womb.

The midwives on recovery were completely, utterly wonderful - that is the least I can say, in that respect. They took care of me, our new baby and my husband. I also have praise for the nurses and student midwives and anyone else that I just can't remember. However whenever I said that I had said no to a hysterectomy they said either a) you signed the form (not relevant as verbally I had said no, on my consent form it says I have told the doctor or dentist what not to do!) or b) it was the only was to save your life (I was never dying).

When the original obstetrician came round to tell me what had happened, he spoke in a condescending way. Whether it was to stop me getting upset or hysterical I don't know. Apparently they had tried everything that they could and it wasn't working. They used a drug but it hadn't worked. He said it works in 95?% of cases. We were told it was the only way to save my life and if I had been at home I would have bled to death. I looked at home very puzzled and said would the midwife have not done anything? (It was not a if it was a sudden quick bleed) He did not reply.

I had been told after mutilation that they had taken my uterus. I found out from one of the midwives that my cervix had also been stolen. I asked this doctor why and he said ‘because’ and moved on to a different point. I dragged him back to the cervix point and he just looked at me in the ‘how dare you know, it was not necessary' look and moved on. I was even more shocked by this attitude. (as you may or may not know for some women orgasm is not possible without the cervix. The cervix also creates vaginal discharge that cleans the vagina and so reducing infections). The doctor told me that a hysterectomy happens to 1 – 2 women per hospital per year. I was livid that that information had not been given to me. He felt the number was very low I thought it was obscenely high.

When I mentioned not being able to have children and hysterectomy (before going back to theatre) I was shot down and not able to discuss the matter further. If I had been told (that emergency obstetric hysterectomies) happen to a couple of women a year, I would have reiterated to them not to do it to me under any circumstances, had my notes covered in red whatever it took. None of them knew anything about me, so how would they know if I could deal with a hysterectomy or not? They think that just because I am alive I should be grateful. It's supposed to be a quality of life, not a quantity.

About 38 hours after the TOTAL abdominal hysterectomy I was taken to a ward with a majority of less-than-compassionate midwives. One just said "Well, you consented didn't you." ! Worryingly, most of the midwives who came in started the conversation with "Well, when I had my hysterectomy..." Was I in a fit state to care about their hysterectomies?. Consented to, older women, who gave informed consent with several children!!!

I was an emotional mess - in tears a lot, (I was constantly asked why I was crying) I had always wanted more than one child. I was also trying to breastfeed; when I pressed the buzzer for help it was often 10 - 15 minutes before someone was able to come, IF they did come to assist me. Often a nurse came in and when I said that I needed help breast feeding they said that they would get a midwife but rarely this happened. It didn't help that the lady next to me had midwives promptly coming to her whenever she requested, even if it was after my request. My husband thought I was exaggerating the time taken, until it happened when he was there. What I have wondered is whether the majority of the others just couldn't face dealing with me. I have realised now that only the 'main' midwives ever used to come to me.

At one point after struggling to latch our son on, i had a 'gang' of people at the bottom of the bed saying, isnt she doing well, SO patronising! No I was not doing well I had to feed lying down and I was in agony with cracked nipples!

I was also told off every time (they realised) I left our baby in bed with me when I wasn't feeding him! As well as not wanting to miss a moment - I was not in a fit state to be constantly lifting him unnecessarily. Your not supposed to lift an iron for 6 weeks but its acceptable to be lifting carrying, lifting soothing, lifting changing a baby? I was put on the ward to fend for myself and our newborn baby after about 38 hours. The record I have found to date is 24 hours! (for this country), 2 hours for Canada!! If yours was shorter please let me know.

The only reason that I am glad I was in hospital instead of home was the 'assistance' with breastfeeding. I was also confused (I know you can be short staffed) at the amount of assistance I could expect on the ward. In recovery our baby was looked after and all I had to do was feed and cuddle. On the ward some midwives expected me to do everything and one other said, "Just rest and we'll help with the baby, that's what we are here for". (unfortunately I only saw her twice)

At one point I was told that as I didn’t have a uterus trying to heal I would be a lot better off than a mum just with a caesarean. Gosh lets just ignore all the muscles and ligaments that have been severed from the skeleton to get the organs out shall we?

I also found that obtaining medication was like trying to extract hens' teeth. As with a lot of mums, I found it painful to breastfeed. In recovery I was given medication at certain times. On the ward I had to go and get it and keep an eye on the time. Only once was I given it without asking. There was no way that I could feed sitting up so I was lying down which I now understand to be the most difficult position to feed from. The midwives do not have the time or enough training to help us sufficiently – ALLOW BRESTFEEDING COUNSELLORS on to wards.

All I wanted to do those days was sleep, cry, cuddle and feed my baby.

On my first full day on the ward, I had numerous visitors. I only just got back to sleep and another one turned up - not my visitors, but doctors etc, with, in my opinion a stupid question of 'how are you?' One was a physiotherapist to go though exercises. ...'and this will help with your uterus contract ...' though clenched teeth 'I don't have one' (she had previously mentioned my hysterectomy). This, I understand from others, is not uncommon for a physiotherapist to say!!

Due to various reasons, my only visitor was my husband. He could only see me an hour a day weekdays as he had to go to work (we couldn't afford any more time off) and the staff wouldn't shift on the time that visitors had to leave by. (I had had a row about it on the first night on the ward with a midwife!!!) This did not help my mental state at all. We were on the ward about 4 days, as I could not give him a bath he did not have another one after the one on recovery. As I had major problems lifting our child his nappy was changed when my husband came to visit, once may be twice very painfully and very scarily (I was scared of dropping him) by myself. A midwife may have done it once or twice making me feel very guilty and wasting their time.

Two midwives from recovery took time out to see me to see how I was doing; this made me feel much better if only for a short time. I even said to her, I have had a hysterectomy that I did not consent to, what has to happen to allow visitors to stay later? No reply. However if there was a remote chance you may have a baby in the next couple of days your partner was allowed to be there!

I left hospital about 6 days after mutilation to cope on my own. My husband had to go to work, he was also called away to another part of the country within the first 2 weeks. I did not have anyone calling in to help cooking, cleaning or helping with our son. I was told by the physiotherapist not to carry our son up or down stairs for the first 6 weeks. I was told off by the Health Visitor for staying in the bedroom week after week! Health visitors and GP’s are another story. Several years on I am still waiting for things to start moving in a positive direction. I guess finding a real GP after 2 ½ years can be placed in that category.

UPDATE on the legal issues.

My notes have been looked at by various people. One independent opinion is that from what is written in the notes. (Several people do not believe that what is in the notes is what actually happened, bearing in mind no reference to refusal for hysterectomy or blood transfusion). That they did all that they legally had to before (ignoring the consent issue) stealing my organs. There are other things that they COULD have done to save my uterus however legally they did not have to and so they did not. When asked why they did not use the 100% effective procedure for stopping post partum haemorrhage without resorting hysterectomy they said it was not a procedure that they used. We had expected them to say they did not know of it – it has only been around for nearly TEN years. So bear this in mind whenever you are told that doctors regularly update their knowledge. IF you do go into hospital remember that they legally do not have to do EVERYTHING to save your organ/s only a set number of things.

I do know that there are good doctors that do go beyond the minimum legally required however – do you know if you will have them?

The law is that any doctor or medical person has to have your informed consent to do anything to you, even take your blood pressure. Unfortunately no one is enforcing this .

The Law

I am one of the few that tried the police. I know that others have and so I asked for their advice. All I can say is I tried. I had to. In 5 or 10 years time I couldn’t bare to think that I had not done all I could. I was interviewed by the police who basically said no because of geography, because it had been done in a hospital. I said so if this had been done on the street you would do something? “Well it wouldn’t would it?” What could I say? I complained. Another policeman came to interview me. About 2 hours. I do take my hat off to him, he was really good and considerate. It was then passed to the police near to the hospital. Again NO. One of the excuses “well no one else has complained about this doctor/hospital”. I was treated appallingly by these two. I do know of ladies that had been ready to come forward depending on how it went with me but as I point out there is no point is there? On the question of the circumcision (vaginal pleating), they do not believe it to be circumcision as I was not a 5 year old girl tied down on a bathroom floor.

So that is the law. Make sure that you use it and it is kept to. Have someone with you that will speak up for you. And another thing. It is your legal right to have someone in the operating theatre with you even when you have a general anaesthetic. It is usually only hospital policy that they refer to. I now will NOT go into theatre without my husband there, which I have had to do for egg retrieval. Hospital policy has been changed to accommodate this. MY husband now also stands up to doctors and makes sure this is carried out.

Vaginal pleating (see glossary to confirm it is illigal)

I am currently still trying to obtain more information about this. I found it in a book called The Ultimate Rape by Elizabeth L. Plourde ISBN 0966173503. This is an excellent book for those hysterectomized or contemplating it. According to the book vaginal pleating is standard medical practice in America. It is where the vagina has been sliced in 2 and re-stitched tighter. One internal confirmed what I suspected and for those of you who understand such things it is at twenty past eight on the posterior wall. I found another vague reference to it in another book saying that the vagina can be shorter (obviously with the cervix gone, some are reduced to 2 inches depending on the surgeon,) and thinner. Due to knowing about vaginal pleating this hit me straight away. I think otherwise it would not have been noticed as much. I understand normally in this country that usually the vagina is just tied at the top like a draw string, when the cervix is removed. I had another internal done to try and find out more information. The person who did this initially said that all was normal, and then said that there was scaring. This person claims that the vagina is very delicate and tears easily. When it was highlighted, two tares, the entire length, there was no reply. IF this had happened why was I not told? In the notes it said it was straightforward and no complications. I think two tares requiring stitching is something to write up about. The vaginal is now numb (even after several years) the only feeling is pain. From another gynaecologist I understand that most have only ever heard of vaginal pleating, NEVER known it to be done. They were horrified to learn of it being done saying ‘that is illegal, that is the equivalent of female circumcision’. Comparing what happens to me now compared to before and to others that have had a sub total or in some cases a total, I would say that comparing it to female circumcision is justified.

If you are wondering what I would do with hindsight this is it…

I would have had a home birth regardless of the dangers. We would have tried to find the money and hired an independent midwife, if not possible still stayed at home. I think that doctor tried to make me feel grateful for being in hospital and to go against homebirth. WRONG. I am completely pro homebirth. If there had been complications and the midwife felt the a c/s was necessary then I would have gone into hospital but only for a c/s not for other things to be done. If I had had a vaginal delivery and then problems I may have gone into hospital with the no hysterectomy all over my notes. The same if I had had to go in for a c/s. If it was progressing to the point where it was life and death I would have asked to be taken home to die. I would leave hospital a women all my organs in situ, alive or dead. After many years I have NOT changed my mind about that. Birth and death is to be at home with people that care not in a hospital with people (realistically strangers) that in my case did not care. It is quality of life NOT quantity.

I felt that my risks were 50% and then a certainty of shoulder distocia. I now understand them to be far far lower. One training medical person pointed out that our little one had not had a broken shoulder or myself a broken pelvis. I looked at him incredulously, and said THEY HEAL a hysterectomy doesn’t!!! If I was to have lost him at home, that is one thing, I could still have gone on to have our others and to be a host surrogate as planned. HE is wonderful, however he is only one. I would NEVER have had an only child, NEVER.

Compared to some I am in a slightly better position. I do know of at least one woman in their early/mid twenties and with the hysterectomy they took their ovaries. ‘Well they will have stopped working in two years anyway’ It was her first child.

I was young and am barren. I STILL don't like seeing expectant mothers, knowing that I will never have that feeling again. No little baby keeping me awake at night with hiccups, or trying to swim its way out early. I have also been told that there is no assistance for us to have a child on the NHS. If I had a womb and no eggs though, there would be.

(Originally I wrote this) As long as we can find a wonderful lady out there, we are going to try for surrogacy. If we do not find that special person, we will have taken it as far as we can. Although money is an issue, from the joy that our son has already brought us - it will HAVE to be found.

Due to the fact that this is what I am trying to do, tell other people about what can happen, we have been stopped us from working our way thught he surrogacy obstical course for many years.

Due to going though surrogacy we have had to go though counselling. No problems reported in that area or with any other the other counsellors that we know in other ways either. It is only the doctors that have caused us problems.

I was given a little inadequate booklet about hysterectomies. There was nothing about the consequences of them, or surrogacy, given to me by the time I left hospital. This is another area that was barbaric. How many people would have their leg taken off, given no crutches or wheelchair, and given no appointment for a prosthesis? That is how I feel. For me, the consequences of what they have done to me are increasing day by day with no assistance. No one warned me of the sleepless nights (even when little one is sleeping), and when I do sleep I have nightmares. At times I can be doing something and my mind goes back to what has happened and the consequences of…and I am back to being down.

I would tell you why they gave me the hysterectomy - however I have been given different reasons that contradict one another. Your guesstimate may be as good as mine. Do bear in mind though that I was NOT dying, I was no where near and I had said NO.

Consequences See Questionaire, a link is at the bottom of the 'page'

Breast feeding in my case has been hugely effected. It was only after I spoke to another person that had feed after two vaginal births that I found out how much I had missed out on. I had found out a long time ago that when the little one feeds we are supposed to have some lovely hormones go around to reward us for feeding. I had never had that. This lady also said how it had enhanced her sex life, one of the things she had been looking forward to, this no longer the case after her caesarean hysterectomy.

In my case it has ended that part of my life/existence. Think about it logically, the uterus can no longer contract during orgasm to intensify that. Some women can not reach orgasm without the cervix being massaged by the penis. In my case the ‘other areas’ that used to give pleasure no longer work. When some of them are touch I know the path the nerve used to travel, as there is pain along that line and then a very strong pain where I presume the nerve now ends.

My vagina is now too short and too thin. Anything tried in that area is excruciatingly painful. Even the trans-vaginal scans for IVF causes a LOT of pain. Some of ladies that did the scan felt uncomfortable doing it with the pain that was being created. Also a lot of after pain!?

Would I have been willing to give up my orgasms – NO. Why should my also young husband also have to give up that part of his life? There are some that just claim its psychological. NOT a chance. Every so often we get me rather drunk to try to reduce the pain, does it work, NO. I expected pain at the beginning, not after all of these years. It took me a VERY long time until I was even able to consider such a thing. Even now I sometimes can not even contemplate such a thing I just see it as rape. My hormones are very strange and unpredictable now. It sometimes becomes very very hard as my body is calling out for the chemicals that are normally released during/after orgasm and I can not give my body it. For me that is usually when my rash starts. No amount of chocolate makes a difference:->>

Some people after this can never face the idea of sex again – this is normal. A normal consequence.

How does my husband feel about this?

At the beginning he thought like I think most husbands, oh well they would have only done it if absolutely necessary. Also because he was there when I refused consent he concluded that they must have legally been allowed. I was distraught, I instinctively knew that things did not add up. Originally my husband believed that I was dealing with it wrong and my feelings were wrong etc, echoing what the medical profession was telling us. Believing that they did it without necessity is not where anyone wants to go.

Fortunately for me, my husband has a scientific background and likes to think in logic. As lay people we also could not make sense of a lot of things. There were also some throwaway comments made by the doctors that also did not add up. After a few months I started to get my head together and tried to obtain answers. Some independent people looked over my notes. Two of these cried in front of my husband and I and one profusely apologised for the medial profession.

My husband still did not want to believe what this could mean. I started reading good books about hysterectomies and that my reactions were completely normal. Eventually we obtained some information from the hospital and that was the turning point for my husband. The doctors denied that I had refused consent for the hysterectomy. As my husband was siting by my side when I said those words he now knew for definite, that something was not right. When after many months my views had not changed the GP tried the normal thing of trying to use my husband against me. At one meeting the GP turned to my husband and said ‘don’t you think she should stop asking all these questions now?’ My husband replied with, ‘No, every time we get an answer to a question it creates more questions’. The GP was very shocked and not at all happy.

For me I was pleased that for once I had trusted my instincts. No, it does not change anything but it is a relief that I was right to trust in them. I was never dying, I was no where near death.

My husband and I have roughly the same conclusions. That if all this had been done, even illegally, if they had helped us have more children and given us answers we would be preaching different things to what we are now. That they may have broken the law but they would have at least be trying to get our family life back on track. However the fact that I had SO much vaginal damage, the fact no one from the hospital has ever gone though my notes with us (I have never even met the doctor that authorised the mutilation). The fact that the first 7 GP’s and the doctors at the clinic (for a considerable amount of time) would not allow us to have more children as I will not stop helping and informing people about what can happen when you enter a hospital. It does not make sense, if they have nothing to hide and did nothing wrong...

However you can make up your own mind....

One day I was speaking to someone I had a short aquantance with. Told my story. He asked the name of the hospital, then asked the name of the doctor. He was shocked, it was the doctor that his wife had been with for three or four of theri children. For him as a man and as a husband what was MOST shocking about all of what was done, was the fact that they had done it all with no consultation with my husband what so ever, he was only informed afterwards! He said that he would never allow him near his wife again! It then transpired that he had worked as a legal person, aned urged me to sue. This is someone that an hour before would have writen this doctor the best CV in the world!

* Anna's questionnaire
* Anna's discovery of vaginal damage
* Anna's breastfeeding account
* Anna's surrogacy
* Summary of the Independent medial legal doctors meeting

(Home page www.a-little-wish.org.uk)
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