Yaz’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 ….. 0012

Age at hysterectomy? ….. 32 (1969)
Questionnaire completed ..... May 2003 updated June 2006
How arrived with us ..... Anna on radical midwifery
Address .... West Yorkshire
Children ….. 1 (Vb male)
Religion ..... not asked
Marital status before ….. married
Relationship changed? ….. no
Ethnic group ….. White British
What academic level did you hold prior to hysterectomy ..... not asked
Did you / do you smoke ….. no
Mother survived ….. yes
Baby survived ….. yes
Job or career before / after ….. teacher

Before Pregnancy

What was your menstrual cycle like before you became pregnant? ..... not asked
Did you have any, diseases, std's etc, that may have afftected your fertility? ..... No

Pregnancy

Was it 'normal' ….. Enlarged ovaries at approx 8 weeks due to IVF drugs (OHSS)
Whist expecting did you develop any conditions? ..... BLEEDING ON AND OFF FROM 28 WEEKS DUE TO LOW LYING PLACENTA
Where was the birth wanted/planned home or hospital ….. hospital
If a planned home birth why a change of plan ….. No
If c/s, planned or elective, why ….. No
Hospital …… Midlands? of England
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 asked)

Date that labour began? ….. 1 November 2001
Were you induced? ..... yes
Date of delivery? .....1 November 2001
Problems during delivery? ..... EPIDURAL WAS NOT IN CORRECTLY AND HAD TO BE REPOSITIONED
If emergency caesarian why? were you happy with this? ..... n/a
Problems after delivery? ..... BLEEDING, RELAXED UTERUS – NOT CONTRACTING

****
1. Where you induced and if so what reason was given? FOR MY AND MY CHILD’S SAFETY – EVERYTHING WOULD BE UNDER CONTROL AND I WOULD NOT BE AT RISK FROM BLEEDING AGAIN WHILE OUT AND ABOUT
>2. Did you have an epidural? Yes
Any other pain relief - GAS AND AIR BUT MADE MY NE SUFFER FROM PINS AND NEEDLES AND DIZZINESS
>Did you have any problems with your epidural? - IT HAD TO BE REPOSITIONED
>3. How long was the first / second / third stage?
2003 - My second stage was quite short and as it turned out it was a blessing as that could have lead to further complications
2006 - 1 ST ABOUT 1 HOUR, DRUGS MADE 2 ND QUICKER – ABOUT 5 HOURS 3 RD ABOUT 1 HOUR

>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? - BEFORE MY WATERS WERE BROKEN IN DELIVERY SUITE 4 UNITS SAVED, GIVEN A SENIOR MIDWIFE
Did you have any other intervention?
>5. Were you allowed to eat / drink and if not what reasons were given? - DRINK – YES FOOD – NO – TOLD THAT IT WOULD BE TOO RISKY INCASE I NEEDED A C SECTION
>6. What procedures were followed immediately after delivery? - GIVEN USUAL TO ENCOURAGE PLACENTA DELIVERY
>7. When did you realise that there was a problem? - MIDWIFE HIT THE ‘PANIC’ ALARM
>8. Was your husband allowed to stay in the delivery suite whilst they attempted to stem the bleeding? - YES
>9. What was done to stem the bleeding? - BI-MANUAL COMPRESSIONS, DRUGS STRAIGHT INTO THE UTERUS, STITICHING – BUT THE STICHES KEPT COMING OUT – MY TISSUE WAS LIKE ‘JELLY’ AND COULDN’T HOLD THEM
>10. Did you have any bi-manual compresions and if so did you have any pain relief? - NO AS IT WOULD HAVE MADE MY BLOOD PRESSURE DROP EVEN FURTHER
>11. Were you conscious whiist they attempted to solve the problems? - YES
>12. Did you ever feel as though you were not going to survive? - YES
>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? - ABSOLUTELY NOT - NO
*****

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? ….. Yes
What were the circumstances for you to be taken (back) in? ….. High spiral tears and relaxed uterus
If taken (back) in were you told it was for a hysterectomy or warned it may result in hysterectomy? ….. I was 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 ….. November 2001
Were you conscious or under general anaesthetic? ..... not asked
What did they try before undertaking the hysterectomy ….. Everything – not sure quite what that means. I can’t remember what was said / too technical
How much blood transfused before / during hysterectomy ….. 34 units, 149 units of a range of fluids – saline, Heartmans, plasma etc I lost approx 12 litres in all.
Consent specifically given for hysterectomy? ….. yes form husband
Minutes from death, if applicable ….. Not sure but to me it felt very imminent.
Did you go into cardiac arrest ….. No
Was your husband told they were going to do it before they did it? ….. Yes

After hysterectomy

How did you learn of your hysterectomy ….. Consultant told me when I came out of sedation
Reason for hysterectomy ….. high spiral tears and uterus problems
How much blood were you transfused after hysterectomy? ….. Don’t know - unconscious
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? ….. Don’t know what this means!!
What incision scars have you? ..... line down
If more than one do you know what was for caesarian and what was for hysterectomy? ..... not asked
Intensive care/ how long? ….. over 3 days, I had fluid on my lungs, had to be on a ventilator for 36 hours and oxygen for 3 days – 1 day of which was on a special mask
On recovery/ward care? ….. 1 day on HDU
Infections post hysterectomy, either in hospital or shortly after ….. No
How was pain managed? ….. Epidural in place for 5 days ( from onset of labour) morphine / paracetamol (yes I know this sounds strange!)tylex
When expected to fend for self and baby? ….. Not allowed to do anything for 6 weeks, then only bare minimum
How were you treated by the staff? ….. most were great. 1 attempted to check the size of my uterus and 1 left me with a screaming, naked newborn for 15 minutes while she dealt with someone else. Not given much support with breastfeeding.
Did they care for you well? ….. mainly -yes
Did they care for your child/ren well? ….. n/a
If you were crying were you given compassion? ….. I did not cry in hospital – still suffering from shock
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? ….. It was suggested but I laughed at her and told her that I did not believe it ever to be a likely scenario for us.
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? ….. **after she had left hospital (2003) Yes and I still see her every couple of weeks or so (2006 Now discharged)
Did the physiotherapist see you/ Were you given exercises to make your uterus contract? ….. I saw someone on ICU who gave me exercises to do whilst in bed to prevent DVT
How long was your hospital stay? ….. in total – 2 weeks
Were you encouraged to stay as long as you needed or not? ….. yes but I got to the point where I HAD to get out.
Were you told how often this happened? ….. Once or twice a year but I was the worst case they had ever had.
Were you given any information about how long your ovaries would 'last'? ….. Originally no, but since found out that it is likely to be about 5 years

(After) Leaving hospital

Were you given information on family planning? ….. No
How much help did you at home and for how long? ….. None – just family and close friends. My husband had compassionate leave for 2 weeks then I had family and friends in every day for a month.
How were you treated by your GP? ….. At first he had not been fully notified of the events. He visited me two days after being discharged and was unhappy about the situation. He wrote a letter if complaint about the circumstances of my discharge and visited me 3 times in the first 4 days, then made occasional phone calls to check on the amount of time I was up and about and how I was coping.
How were you treated by your midwife? ….. She came every day for 2 weeks – she was very sympathetic and ‘pandered’ to our every whim.
How were you treated by your Health Visitor? ….. OK
If you wanted to go though a process of more children were you helped? ….. n/a
Did you breast feed for as long as you wished. If so for how long? ….. Yes even though there were times when I was in so much pain to feed him that I felt like giving up. It also meant that I could not take medication for severe migraines that had been triggered by my poor health. But I stuck it out and finished feeding him when he was 13 months – it was the only thing that I had control of – no one else could do this and it was the only thing I COULD do for him.

Consequences

Your well being ...

Did you bond with your baby or do you feel the operation caused problems? ..... 2006 NO – ONLY THING ON MY MIND WAS WETHER I WAS GOING TO SURVIVE I WENT THROUGH A STRANGE PHASE OF WISHING I WASN’T A MOTHER
Do you feel like a survivor or victim?…..survivor
Do you feel as though you have been raped? ..... 2006 YES – INTERNAL EXAMS AND SEX AFTERWARDS WAS TRAUMATIC AND IT TOOK AGES FOR ME TO COME TO TERMS WITH IT
Do you still feel like a woman? ….. No – not really – I feel like a ‘half caste’
Do you feel there is anyone to blame or fate? …..Not sure – maybe the consultant for not encouraging me to have a caesarean and for telling me that a VB would be OK – but – he wasn’t to know what would happen as a result
Are you grateful to be alive? ….. yes
Do you tell others what has happened? If not do you have a reason? ….. Most of my colleagues / friends / family knew because things were so bad but I do not discuss it with anyone openly and I avoid any conversations about pregnancy, child birth and newborns
Any legal action taken? Sucessful? ..... 2006 NO – AT LEAST I AM ALIVE TO SEE MY SON GROWING UP
If applicable were the police contacted? Successful? ….. n/a
Have you suffered post traumatic stress disorder? ..... 2006 YES YES YES!
Have you suffered a change in depression? ..... Yes. I have had to work very hard to avoid needing any medication and I’m still having to work very hard
Do you now suffer from anxiety? .....2003 a little 2006 MORE ON SOME DAYS
Do you suffer from sleeplessness? ..... Not at first- I was too exhausted –even going to the toilet was a real treck.
Do you have nightmares or have you had, that you feel are associated with this? ..... Gosh yes - it was horrendous – nightmares / flashbacks / nigh sweats. I hated night times because I felt that there was a chance that I may not wake up. The dreams were so real. I also suffered /suffer from palpitations and they wake me up. I only get them on odd occasions now.

Physical ...

Has / did your menopause start early? ….. No
Do you now have or a change in IBS? ….. No
Do you now have incontinence, if so when did it start? ….. Struggle with bladder weakness
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 – I think it is the nerves in the stomach and something to do with how the internal organs reposition themselves slightly after hysterectomy.
Do you now suffer from a shortness of breath? ….. Only through palpitations
Can you still stretch properly? ….. yes
Has you libido changed (as it altered your sex life)? …..
Do you now have problems (pain / incontinence) coughing and sneezing? ….. Yep!
Do you have abdominal pain? …..Yes but not sure how much is in the mind
Do you now have a problem with weight gain? …..
2003 - no
2006 - YES AROUND MY STOMACH – I LOOK LIKE I’M 5 MONTHS PREGNANT
Do you now have a different figure? …..
2003 - I weigh less and find it difficult to fulfil my appetite
2006 - NOW I WEIGH 1 STONE MORE
Do you suffer more headaches? ….. no
Do you now suffer from rashes? ..... not asked
Have you had any tidy up operation/s? comments? …..
answered 2006 - HAD AN EXAMINATION UNDER ANESTHETIC .. HAD TO USE A VAGINAL DILATORS TO REDUCED THE SCARRED TISSUE

Hospitals reaction ...

Do you know, have you met the doctor that did the operation? Was the doctor a consultant? ..... He was my IVF consultant – I’d been treated by him for 4 years and it was just coincidence that he happened to be on call that evening.
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) ..... YES THERE ARE NOW MORE ‘PACKS’ IN DELIVERY SUITE TO COPE WITH POTENTIAL CASES LIKE MINE – IE ABDOMINAL PACKS, HYSTERECTOMY PACKS ETC AS THEY HAD TO GO AND COLLECT THEM FROM THE OPERATING THEATRES WHEN I WAS IN
Did you think about having your organ (s) returned to you? Any results? ….. No I know that they were (are?) sitting in a lab somewhere where they have been analysed to see if they could find a cause
Have you obtained your notes? Were there any problems? ..... No
Do you beleive they are an accutate portrayal of what happened? ..... 2006 - SORT OF – I STILL FEEL THAT THE DOCTOR WHO DID THE INITIAL COMPRESSIONS PRESSED TWO HARD AND THAT CAUSED OR WORSENED SOME OF THE BLEEDING
Has the doctor gone over your notes with you? .....
2003 - Not with the notes in front of me but I have had a few meetings
2006 - YES NOW AT THE REQUEST OF ME AND MY COUNSILOR
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? ..... I went back for a couple of meetings, the midwife who delivered my son was and has been very helpful in putting the pieces together. I still have many questions even now and don’t feel that I have enough medical knowledge to understand as well as I would like.
If you wish to meet or speak to the peole involved in your 'care' are you able to? ..... NOT THE CONSULTANT WHO ACTUALLY DID THE HYSTERECTOMY OR THE ONE WHO SORTED OUT MY VAGINA
Have you gone back to the hospital if so was this helpful for you? ..... FELT I NEEDED TO VISIT THE DELIVERY SUITE AGAIN. WANTED TO SEE THINGS AS THEY ARE NOW- NOT UNDER THE CIRCUMSTANCES I REMEMBER THEM IT WAS VERY TRAUMATIC AND I CRIED BUCKETS BUT IT DID HELP AFTER A TIME TO REMOVE SOME OF THE FLASHBACKS AS I COULD RELATE THEM TO THE REAL PLACES. IT WS VERY DIFFICULT TO DO AND TOOK LOTS OF GUTS. I ALSO DID IT WITH THE MIDWIFE AND COUNCILOR ONLY – I COULDN’T FACE MY HUSBAND EVEN KNOWING BECAUSE I DIDN’T WANT TO UPSET HIM – NO ONE KNOWS EXCEPT THOSE WHO READ THIS

Miscellaneous

When did it HIT you? ..... After I came home, probably about 2 months later, when I first had ‘sole’ charge of my son.
Did you plan to be an organ donor before the hysterectomy? Are you still? Or vice versa. ….. I had considered it before but not done anything about it. Now I’m registered through the ‘Boots’ advantage card scheme.
Has it effected family life, if so how? ..... not asked
How has your husband / partner dealth with this? ..... Just as I would expect! By moving on – not discussing it and not going in to detail when I asked him questions
How has this changed the quality of your life? ..... My life is very different by the fact that I now have the long awaited child and I’m the main income earner. The main difference is that I don’t have to regularly take painkillers for period pains for days on end plus all the other things – hot baths, disrupted sleep that come with them.. I do live for each day now. The evenings mean much more to me because it’s when I spend time with my family.
What are your overall views? ..... Grateful that my life was saved, bitter that I lost so much –a ‘normal’ birth experience, time with my son, time as a new family, that my husband (and I) had to endure such a horrible experience and that my son’s birthday will always be a time of mixed emotions. Without the support of my family and friends I would have found things impossible.
With hindsight would you have done anything differently? ..... Not had a child. This may sound heartless and I love him to bits but if I knew what was coming I would not have gone through with any of it. I would have pushed for a caesarean instead of agreeing to a natural birth. Was offered the option but told that a VD would be find as the placenta had moved away from the cervix. I do not feel – with hindsight- that I should have agreed to be induced but looked at other alternatives, and I would have taken life easier after the first bleed if I knew the full consequences. I would have requested to be induced at a more appropriate time – ie during the early morning instead of tea time so that all necessary staff would have been on site.
Advice for others ….. Read as much as you can, (I didn’t come across anything that mention how severe a PPH could be) be as informed as you can and make sure that your partner understands the potential risks.
Any other thoughts or comments? ….. not asked

If IVF before hysterectomy…

Cycle number ….. 6
Eggs retrieved - embryos ….. n/a
Embryos implanted ….. 2
Result ….. first (cycle 5) was ectopic, Then successful

More children wanted/hoped for ? If so how many? ….. 1 more – I was an only child and vowed that my child would not be an only one I hated being on my own.

Surrogacy ….. I wish – but I don’t think I could stand someone else carrying my child when I so badly want to do it myself.
Eggs retrieved - embryos ….. n/a
Embryos implanted ….. n/a
Result ….. n/a

Adoption ….. Possibility but age is against us I feel

* Yaz's account (possible future addition)

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