Marion’s Questionnaire (version 9) (For more Questionnaires please click here)

*this questionaire is constantly evolving and so some people may not have been asked or had chance to update their informaion to the new version, that is why some questions will have not asked next to them

Background

Our admin ….. 0004

Age at hysterectomy? ….. 30 (1968)
Questionnaire completed ..... July 2003
How arrived with us ..... word of mouth
Address .... Midlands England
Children ….. 1 male (elcs)
Religion .....
Marital status before ….. married
Relationship changed? ….. yes now divorced
Ethnic group ….. Caucasian
What academic level did you hold prior to hysterectomy ..... HND
Did you / do you smoke ….. no
Mother survived ….. yes
Baby survived ….. yes
Job or career before / after ….. admin assistant / dental nurse

Pregnancy

Was it 'normal' ….. No, multi fibroid uterus, high threat of late or early miscarriage (7 weeks possible loss of twin)
Whist expecting did you develop any conditions? ..... not asked
Where was the birth wanted/planned home or hospital ….. hospital (told until 1 week before c/s necessary, then offered trail 10 hour labour but told would end up with c/s anyway) Advised general anaesthetic.
If a planned home birth why a change of plan ….. n/a
If c/s, planned or elective, why ….. elective as told fibroid uterus would not labour correctly
Hospital …… midlands
Doctor/s ….. n/a
Previous 'childbirth' vaginal, c/s etc ….. No
Did you want to / plan to breast feed ….. Yes
Have you breast fed before, for how long ….. No

Labour and birth (not applicable)

Before operation

If planned c/s how long was the consultation? (should be no less than an hour) .…. 30 minutes if that
Were any risks including hysterectomy given to you? ….. No just told that it would be a complicated c/s
Was sterilisation talked about / planned / agreed to? ….. No
Were you asked if you would consent to a blood transfusion? ….. No
If after arrival of baby were you given any transfusion? ….. 22 pints (in total)
What were the circumstances for you to be taken (back) in? ….. after c/s unknown, pph and blood clotting condition AVT
If taken (back) in were you told it was for a hysterectomy or warned it may result in hysterectomy? ….. No unconscious.
Were you asked if you suffered from depression? ….. No
Were you asked if you had ever been abused? ….. No
If you were abused in the past has this come to mind more than before the operation ..... n/a

During operation

Hysterectomy date ….. 24 June 1997
Were you conscious or under general anaesthetic? ..... general anaesthetic
What did they try before undertaking the hysterectomy ….. unknown
How much blood transfused before / during hysterectomy ….. 22 pints (in total)
Consent specifically given for hysterectomy? ….. no, unknown if family was consulted
Minutes from death, if applicable ….. unknown
Did you go into cardiac arrest ….. unknown
Was your husband told they were going to do it before they did it? ….. possibly

After hysterectomy

How did you learn of your hysterectomy ….. was told by a doctor (possibly told by brother earlier)
Reason for hysterectomy ….. pph and avt?
How much blood were you transfused after hysterectomy? ….. 22 pints (in total)
Type of hysterectomy, sub/total? If total were you told straight away that it had been done and were you given a reason for this? ….. sub
Do you still have both ovaries? If not were you told straight away that it had been done and were you given a reason for this? ….. yes
Was your vagina pleated? If so were you told straight away that it had been done and were you given a reason for this? ….. no
What incision scars have you? ..... classic and bikini line (my notes say that I was warned of this however I was NOT)
If more than one do you know what was for caesarian and what was for hysterectomy? ..... not asked
Intensive care/ how long? ….. 3 days (on respirator, not sure what else)
On recovery/ward care? ….. 10 days (own room)
Infections post hysterectomy, either in hospital or shortly after ….. bladder infections
How was pain managed? ….. oh the whole ok but some episodes where I was screaming in pain and had morphine injections in my back
When expected to fend for self and baby? ….. Not during my hospital stay.
How were you treated by the staff? ….. ok on the whole, apart from there were a few times like, “The last time I saw you, you had a uterus, how are you feeling now?”
Did they care for you well? ….. Yes apart from above
Did they care for your child/ren well? ….. Quite good on the whole, however often woke to find my son missing and then panicked.
If you were crying were you given compassion? ….. Yes but constant pressure to be accepting of the situation
Were you told that you should be grateful you had a partner/husband (many women in here do not)? ….. Yes
If you had your ovaries were you told you could still have children with surrogacy? ….. Yes
Were you told to adopt ? ….. Yes
If you were very unhappy were you told to change your attitude or you may well loose your partner / husband? ….. No
Did a counsellor see you? ….. No but I asked for the chaplain at one point, he was a lovely man who was shocked at the state of me and my situation.
Did the physiotherapist see you/ Were you given exercises to make your uterus contract? ….. Saw a physiotherapist but not told that
How long was your hospital stay? ….. 13 days
Were you encouraged to stay as long as you needed or not? ….. Yes
Were you told how often this happened? ….. No this is really rare, this an absolute nightmare scenario for a woman on her first baby for the medical team (I feel it should be a nightmare scenario regardless)
Were you given any information about how long your ovaries would 'last'? ….. Yes, I was told they would probably last 5 years less than if I had not had the operation

(After) Leaving hospital

Were you given information on family planning? ….. Yes, and then ‘oh no you don’t need that’
How much help did you at home and for how long? ….. To my parents for two weeks with a maternity nurse to assist. Then home with the maternity nurse, then a little help from mother-in-law. Maternity nurse for a total of 4 weeks.
How were you treated by your GP? ….. Very well
How were you treated by your midwife? ….. OK
How were you treated by your Health Visitor? ….. Treated well but the point was made very strongly that I was very lucky to have one child as many women do not
If you wanted to go though a process of more children were you helped? ….. No, I had to do it all myself
Did you breast feed for as long as you wished. If so for how long? ….. No I was too ill

Consequences

Your well being ...

Did you bond with your baby or do you feel the operation caused problems? ..... I bonded ok but I feel I missed out on the early weeks as I was too ill
Do you feel like a survivor or victim?….. Victim
Do you feel as though you have been raped? ..... Yes
Do you still feel like a woman? ….. On the whole but there are some times when I do not feel as feminine as I used to
Do you feel there is anyone to blame or fate? ….. Mixture of both but more the hospital. I do not feel I should have had a caesarean
Are you grateful to be alive? ….. Yes on the whole, but sometimes the emotion pain is really unbearable
If only caesarian (s) do you feel robbed of giving birth? ..... Yes. If I had been asked straight after the operation I would have said no, however after speaking to women that have given birth I do.
Do you tell others what has happened? If not do you have a reason? ….. Normally no, as I feel a great sense of shame even though it was not my fault. I feel also feel I have been rendered some kind of freak.
Any legal action taken? Sucessful? ..... Trying to pursue
If applicable were the police contacted? Successful? ….. No
Have you suffered post traumatic stress disorder? ..... Yes
Have you suffered a change in depression? ..... Yes
Do you now suffer from anxiety? ..... Yes partly due to the operation
Do you suffer from sleeplessness? ..... I did do for a time shortly after the operation
Do you have nightmares or have you had, that you feel are associated with this? ..... Yes. Concerning me feeling uncomfortable and out of place and also being bullied and harassed by other people.

Physical ...

Has / did your menopause start early? ….. No
Do you now have or a change in IBS? ….. No bowel problems previously and now have IBS and have had a colonoscopy
Do you now have incontinence, if so when did it start? ….. Very little occasionally with a very bad cough
Do you have movement in your abdomen like a baby moving? (a couple of us guess it is just the bowel doing its job)? ….. Yes
Do you now suffer from a shortness of breath? ….. Occasionally but not really
Can you still stretch properly? ….. on the whole but can lead to sharp pains
Has you libido changed (as it altered your sex life)? ….. No
Do you now have problems (pain / incontinence) coughing and sneezing? ….. Yes
Do you have abdominal pain? ….. Yes
Do you now have a problem with weight gain? ….. Yes
Do you now have a different figure? ….. Yes partly due to scar
Do you suffer more headaches? ….. Yes
Do you now suffer from rashes? ..... not asked
Have you had any tidy up operation/s? comments? ….. No

Hospitals reaction ...

Do you know, have you met the doctor that did the operation? Was the doctor a consultant? ..... Possibly
Was an internal review undertaken to see hat happened and if mistakes coul be learnt from? (Anna was told this was standard practice with such an outcome) ..... Unknown
Did you think about having your organ (s) returned to you? Any results? ….. I did much later on but was unsuccessful but I would have loved to have had the opportunity to have then returned.
Have you obtained your notes? Were there any problems? ..... Yes but not easy, had to keep chasing (about £30)
Do you beleive they are an accutate portrayal of what happened? ..... Not completely
Has the doctor gone over your notes with you? ..... No, I tried to go back to the hospital to ask question but basically told that I was lucky to be alive and that I should try to put this behind me. And seemed to evade the questions
Did you have all your questions answered? If so was this straight away or did you have to go though some form of complaints procedure? Sucessful? ..... No
If you wish to meet or speak to the pepole involved in your 'care' are you able to? ..... No
Have you gone back to the hospital if so was this helpful for you? ..... Yes and no

Miscellaneous

When did it HIT you? ..... Straight away
Did you plan to be an organ donor before the hysterectomy? Are you still? Or vice versa. ….. I had never considered it and would never do it.
Has it effected family life, if so how? ..... Yes contributed to the breakdown of my marriage
How has your husband / partner dealth with this? ..... Unable to communicate about it and unable to express his feelings, it is a closed subject as far as he is concerned.
How has this changed the quality of your life? ..... A lot negatively. It’s a terrible pain that will not go away and a nightmare that I can not wake up from
What are your overall views? ..... That it is a terrible operation and unconsenting women to NOT recover from this operation
With hindsight would you have done anything differently? ..... Yes gone though labour, may be had a myomectomy before having my son.
Advice for others ….. Insist on being given the facts
Any other thoughts or comments? ….. not asked

If IVF before hysterectomy… (not applicable)

More children wanted/hoped for ? If so how many? ….. 2 - 3 more

Surrogacy ….. yes
Eggs retrieved - embryos ….. 14 eggs then 13 eggs
Embryos implanted ….. n/a
Result ….. n/a

Adoption ..... possibly

* Marion's account
* Marion's surrogacy (future addition)

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