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

*** We are awaiting the final questions, for more accounts on this subject ***

*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 ….. 0003

Age at hysterectomy? ….. 38
Questionnaire completed ..... February 2004
How arrived with us ..... Caesarian support
Address .... North west, England
Children ….. male (emcs) male (elcs) female (elcs) male (elcs)
Religion ..... Church of England
Marital status before ….. with partner
Relationship changed? ….. no
Ethnic group ….. white
What academic level did you hold prior to hysterectomy ..... O levels
Did you / do you smoke ….. no
Mother survived ….. yes
Baby survived ….. yes
Job or career before / after ….. mother

Pregnancy

Was it 'normal' ….. yes
Whist expecting did you develop any conditions? ..... placenta previa
Where was the birth wanted/planned home or hospital ….. did wish a vaginal delivery in hospital
If a planned home birth why a change of plan ….. n/a
If c/s, planned or elective, why ….. due to placenta previa
Hospital ……
Doctor/s …..
Previous 'childbirth' vaginal, c/s etc ….. emcs, elcs, elcs
Did you want to / plan to breast feed ….. yes
Have you breast fed before, for how long ….. 1st about 15 weeks, 2nd about 2 months, 3rd about a month (bad infection after c/s)

Labour and birth

n/a

Date that labour began? …..
Were you induced? .....
Date of delivery? .....
Problems during delivery? .....
If emergency caesarian why? were you happy with this? .....
Problems after delivery? .....

****
1. Where you induced and if so what reason was given?
2. Did you have an epidural? Did you have any problems with your epidural?
Any other pain relief
3. How long was the first / second / third stage? ( My second stage was quite short and as it turned out it was a blessing as that could have lead to further complications)
4. Were you aware of any precautions made for the delivery eg saving blood units / not allowing a birth in the 'home suite', being given 'senior' midwives for the delivery?
Did you have any other intervention?
5. Were you allowed to eat / drink and if not what reasons were given?
6. What procedures were followed immediatley after delivery?
7. When did you realise that there was a problem?
8. Was your husband allowed to stay in the delivery suite whilst they attempted to stem the bleeding?
9. What was done to stem the bleeding?
10. Did you have any bi-manual compresions and if so did you have any pain relief?
11. Were you conscious whlist they attempted to solve the problems?
12. Did you ever feel as though you were not going to survive?
13. Did you feel as though everything (ie the staff) were completely in control of the situation?
14. Were you fully informed at all times about what was happening and why?
*****

Before operation

If planned c/s how long was the consultation? (should be no less than an hour) .…. 10 mins
Were any risks including hysterectomy given to you? ….. vaguly, saying that 'we will try to avoid a hysterectomy' I went mad saying that that was not an option. nurse told me to calm down as it was so rare not to think about it
Was sterilisation talked about / planned / agreed to? ….. asked and refused, I said that I wanted more children
Were you asked if you would consent to a blood transfusion? ….. no asked
If after arrival of baby were you given any transfusion? ….. yes
What were the circumstances for you to be taken (back) in? ….. not time difference
If taken (back) in were you told it was for a hysterectomy or warned it may result in hysterectomy? ….. n/a
Were you asked if you suffered from depression? ….. no (however have suffered)
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 ….. 9 June 1999
Were you conscious or under general anaesthetic? ..... conscious
What did they try before undertaking the hysterectomy ….. several things, including a figure of eight technique
How much blood transfused before / during hysterectomy …..
Consent specifically given for hysterectomy? ….. when told what they were going to do, refused consent and nurse held my arms back. Felt (during c/s) uncomfortable and asked to be put to sleep and was told 'we have nearly finished'.
Minutes from death, if applicable ….. unknown
Did you go into cardiac arrest ….. no
Was your husband told they were going to do it before they did it? ….. yes, sort of waited for his consent after it being mentioned however parner never gave consent

After hysterectomy

How did you learn of your hysterectomy ….. was awake
Reason for hysterectomy ….. massive haemorrage, de-hissed womb
How much blood were you transfused after hysterectomy? ….. unknown
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? ….. total. when asked why was told, 'because that is how i was taught' A soon to be retired doctor.
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? ….. still have them
Was your vagina pleated? If so were you told straight away that it had been done and were you given a reason for this? ….. unknown but not right
What incision scars have you? ..... bikini line
If more than one do you know what was for caesarian and what was for hysterectomy? ..... n/a
Intensive care/ how long? ….. no high dependency, 2 days
On recovery/ward care? ….. 14 days (asked to leave as they needed the bed)
Infections post hysterectomy, either in hospital or shortly after ….. no
How was pain managed? ….. badly, kapake
When expected to fend for self and baby? ….. about 10 days
How were you treated by the staff? ….. Abominably, you still have your boobs, you cant live your life though your children
Did they care for you well? ….. not really, only one that seemed to care
Did they care for your child/ren well? ….. as far as I know
If you were crying were you given compassion? ….. no
Were you told that you should be grateful you had a partner/husband (many women in here do not)? ….. no
If you had your ovaries were you told you could still have children with surrogacy? ….. no, but think about those who do ivf
Were you told to adopt ? ….. no
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
Did the physiotherapist see you/ Were you given exercises to make your uterus contract? ….. no
How long was your hospital stay? ….. 16 days
Were you encouraged to stay as long as you needed or not? ….. no, told needed the beds
Were you told how often this happened? ….. yes, one or two per year per hospital
Were you given any information about how long your ovaries would 'last'? ….. no

(After) Leaving hospital

Were you given information on family planning? ….. no
How much help did you at home and for how long? ….. none
How were you treated by your GP? ….. disrespectfully, you have 4 children
How were you treated by your midwife? ….. some understanding, from a differnt department - well at least you wont have to buy any sanitary products.
How were you treated by your Health Visitor? ….. some ways compassionate, but not understanding
If you wanted to go though a process of more children were you helped? ….. no
Did you breast feed for as long as you wished. If so for how long? ….. no

Consequences

Your well being ...

Did you bond with your baby or do you feel the operation caused problems? ..... did bond, but not as would have wished
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? ….. no
Do you feel there is anyone to blame or fate? ….. people to blame
Are you grateful to be alive? ….. no
If only caesarian (s) do you feel robbed of giving birth? ... yes
Do you tell others what has happened? If not do you have a reason? ….. yes
Any legal action taken? Sucessful? ..... not really
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
Do you suffer from sleeplessness? ..... yes
Do you have nightmares or have you had, that you feel are associated with this? ..... yes

Physical ...

Has / did your menopause start early? ….. yes
Do you now have or a change in IBS? ….. yes, none before
Do you now have incontinence, if so when did it start? ….. no but urinate more and less warning
Do you have movement in your abdomen like a baby moving? (a couple of us guess it is just the bowel doing its job)? ….. no
Do you now suffer from a shortness of breath? ….. no
Can you still stretch properly? ….. yes
Has you libido changed (as it altered your sex life)? ….. yes, negative
Do you now have problems (pain / incontinence) coughing and sneezing? ….. no
Do you have regular abdominal pain, either internal or scar related? ..... internal
Do you now have a problem with weight gain? ….. no
Do you now have a different figure? ….. yes
Do you suffer more headaches? ….. a little
Do you now suffer from rashes? ..... yes
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? ..... yes and yes
Was an internal review undertaken to see what happened and if mistakes could be learnt from? (Anna was told this was standard practice with such an outcome) ..... dont know
Did you think about having your organ (s) returned to you? Any results? ….. yes, as wihed to look at them, but not chase it up, regret it now
Have you obtained your notes? Were there any problems? ..... yes, and a delay
Do you beleive they are an accutate portrayal of what happened? ..... no, not complately
Has the doctor gone over your notes with you? ..... very briefly, 15 mins
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? ..... answers not answered, did the complaints procedure but still not answered
If you wish to meet or speak to the people involved in your 'care' are you able to? ..... yes and no
Have you gone back to the hospital if so was this helpful for you? ..... 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. ….. no did not plan to, but would not now
Has it effected family life, if so how? .....
How has your husband / partner dealth with this? .....
How has this changed the quality of your life? .....
What are your overall views? .....
With hindsight would you have done anything differently? .....
Advice for others …..
Any other thoughts or comments? …..

If IVF before hysterectomy…

Cycle number …..
Eggs retrieved - embryos …..
Embryos implanted …..
Result …..

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

Surrogacy …..
Eggs retrieved - embryos …..
Embryos implanted …..
Result …..

Adoption …..