Jossy’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 ….. 0022

Age at hysterectomy? ….. 26, born 1977
Questionnaire completed ..... February 2004
How arrived with us ..... searching the web for people who have had similar experiences.
Address .... south went England
Children ….. 2 (female 1999, female 2003)
Religion ..... n/a
Marital status before ….. engaged
Relationship changed? ….. n/a
Ethnic group ….. white
What academic level did you hold prior to hysterectomy ..... NNEB, NVQ
Did you / do you smoke ….. yes
Mother survived ….. yes
Baby survived ….. yes
Job or career before / after …..Residential social worker

Pregnancy

Was it 'normal' ….. yes
Whist expecting did you develop any conditions? ..... Just very uncomfortable/had show 2 weeks before going in to labour and also irregular contractions
Where was the birth wanted/planned home or hospital ….. hospital (low risk unit)
If a planned home birth why a change of plan ….. n/a
If c/s, planned or elective, why ….. elective was told I couldn’t deliver naturally
Hospital …… southwest England
Doctor/s ….. consultants names unknown
Previous 'childbirth' vaginal, c/s etc ….. vaginal (ventouse delivery)
Did you want to / plan to breast feed ….. yes
Have you breast fed before, for how long ….. 6 months

Labour and birth

Date that labour began? ….. 14 September 2003
Were you induced? .....no
Date of delivery? ..... 14 September 2003
Problems during delivery? ..... Breech presentation, baby would not descend
If emergency caesarian why? were you happy with this? ..... see above
Problems after delivery? ..... Hysterectomy (ovaries left) half cervix removed, major blood transfusion (40 units) icu heart failure

****
1. Where you induced and if so what reason was given? ..... n/a?
2. Did you have an epidural? Did you have any problems with your epidural? ..... spinal block forcs, epidural then given whilst in htu for pain relief could not get needle in due to not having maternity needle
Any other pain relief ..... morphine
3. How long was the first / second / third stage? ..... 2 hours
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? ..... no
Did you have any other intervention? ..... waters broke
5. Were you allowed to eat / drink and if not what reasons were given? ..... n/a
6. What procedures were followed immediatley after delivery? ..... was in theatre for longer than usual as I had a tear on my abdomen wall (first transfusion given then)
7. When did you realise that there was a problem? ..... Felt ill in recovery room
8. Was your husband allowed to stay in the delivery suite whilst they attempted to stem the bleeding? ..... no
9. What was done to stem the bleeding? ..... Hamobate given, constant uterine massage for 4 hours
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? ..... no
12. Did you ever feel as though you were not going to survive? ..... no
13. Did you feel as though everything (ie the staff) were completely in control of the situation? ..... no
14. Were you fully informed at all times about what was happening and why? ..... No was unconscious
*****

Before operation

If planned c/s how long was the consultation? (should be no less than an hour) .…. n/a
Were any risks including hysterectomy given to you? ….. no
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? ….. 40 units
What were the circumstances for you to be taken (back) in? ….. Atonic uterus
If taken (back) in were you told it was for a hysterectomy or warned it may result in hysterectomy? ….. Yes but cannot remember as was hamerogaing badly
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 ..... no

During operation

Hysterectomy date ….. 15 September 2003
Were you conscious or under general anaesthetic? ..... general
What did they try before undertaking the hysterectomy ….. hameobate, constant uterine massage
How much blood transfused before / during hysterectomy ….. hysterectomy…unsure 40 units in total
Consent specifically given for hysterectomy? ….. Partner gave consent was told they had to do it to save my life
Minutes from death, if applicable ….. yes more than one occasion
Did you go into cardiac arrest ….. tachyocardic heart whilst being transferred back to theatre, shock given, and the n heart failure on the 16 September 2003
Was your husband/partner told they were going to do it before they did it? ….. no

After hysterectomy

How did you learn of your hysterectomy ….. overheard doctors in icu
Reason for hysterectomy ….. atonic uterus plus hamerogaing
How much blood were you transfused after hysterectomy? ….. not known
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? ….. no
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 and no
Was your vagina pleated? If so were you told straight away that it had been done and were you given a reason for this? ….. not known
What incision scars have you? ..... Bikini line scar, scarring on either sides of my groin, scarring
If more than one do you know what was for caesarian and what was for hysterectomy? ..... yes
Intensive care/ how long? ….. 7 days
On recovery/ward care? ….. 4 days
Infections post hysterectomy, either in hospital or shortly after ….. uti
How was pain managed? ….. Morphine co-coda mol
When expected to fend for self and baby? ….. 9 dasy after
How were you treated by the staff? ….. Some excellent others terrible
Did they care for you well? ….. as above
Did they care for your child/ren well? ….. Partner did most of the care, feeds changes etc
If you were crying were you given compassion? ….. By some of the staff
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 still have not been given any options
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? ….. yes not very helpful was told your not the only one this has happened to, at least your baby is well
Did the physiotherapist see you/ Were you given exercises to make your uterus contract? ….. no
How long was your hospital stay? ….. 11 days
Were you encouraged to stay as long as you needed or not? ….. Was encouraged to stay longer wanted to get home to my eldest daughter
Were you told how often this happened? ….. no
Were you given any information about how long your ovaries would 'last'? ….. No was told they would do a hormone level check after year

(After) Leaving hospital

Were you given information on family planning? ….. no
How much help did you at home and for how long? ….. ? None (only family) and visits from midwife
How were you treated by your GP? ….. Fairly well made home visits, although pain level was not under control due to nerve damage
How were you treated by your midwife? ….. Guiltly, she looked though my notes on first visit and said I wasn’t the only one to have missed it was breech
How were you treated by your Health Visitor? ….. Well but little understanding told I would be fine as our family talked about situation
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? ….. was not able to breastfed at all had several failed attempts...

Consequences

Your well being ...

Did you bond with your baby or do you feel the operation caused problems? ..... no
Do you feel like a survivor or victim?….. Bit of both happy to be alive, but finding it hard to come to terms with
Do you feel as though you have been raped? ..... Mutilated
Do you still feel like a woman? ….. Not as much as I did
Do you feel there is anyone to blame or fate? ….. Definitely people to blame
Are you grateful to be alive? ….. yes
If only caesarian (s) do you feel robbed of giving birth? ..... Yes in a way
Do you tell others what has happened? If not do you have a reason? ….. Sometimes
Any legal action taken? Sucessful? ..... n/a
If applicable were the police contacted? Successful? ….. n/a
Have you suffered post traumatic stress disorder? ..... yes
Have you suffered a change in depression? ..... More tearful than usual
Do you now suffer from anxiety? ..... occasionally
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? ….. Unsure have shown some symptoms but told they would not check hormone levels till after a year
Do you now have or a change in IBS? ….. Very constipated
Do you now have incontinence, if so when did it start? ….. With coughing or sneezing
Do you have movement in your abdomen like a baby moving? (a couple of us guess it is just the bowel doing its job)? ….. Sometimes movement due to haematoma
Do you now suffer from a shortness of breath? ….. yes
Can you still stretch properly? ….. no
Has you libido changed (as it altered your sex life)? ….. Yes painful on penetration
Do you now have problems (pain / incontinence) coughing and sneezing? ….. yes
Do you have regular abdominal pain, either internal or scar related? ..... Pain from haematoma and in the scars
Do you now have a problem with weight gain? ….. No weight loss
Do you now have a different figure? ….. Flabby stomach
Do you suffer more headaches? ….. yes
Do you now suffer from rashes? ..... yes especially on hands and face
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 octor a consultant? ..... Yes, was consultant.....?
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) ..... unsure
Did you think about having your organ (s) returned to you? Any results? ….. no
Have you obtained your notes? Were there any problems? ..... Just getting access now
Do you beleive they are an accutate portrayal of what happened? ..... unsure
Has the doctor gone over your notes with you? ..... no
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? ..... Was given a brief account whilst still in hospital told the rest by my partner.
If you wish to meet or speak to the pepole involved in your 'care' are you able to? ..... yes
Have you gone back to the hospital if so was this helpful for you? ..... very traumatic (3 different hospitals)

Miscellaneous

When did it HIT you? ..... November
Did you plan to be an organ donor before the hysterectomy? Are you still? Or vice versa. ….. n/a
Has it effected family life, if so how? ..... Brought us closer
How has your husband / partner dealth with this? ..... Very well
How has this changed the quality of your life? ..... cant do as much as I hoped
What are your overall views? ..... Feel very confused by everything
With hindsight would you have done anything differently? ..... would have possibly not had my baby in a low risk unit.
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? ….. 3

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

Adoption …..

* Jossy's account (possible future addition)

(Home page www.a-little-wish.org.uk)
Your feedback is very important to us. To be added to our guest book ***click here***