Linda’s Questionnaire (version 11) (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

Age at hysterectomy? ….. 30
Questionnaire completed ..... February 2006
How arrived with us ..... through RADMID
Address .... Sweeden
Children ….. 1 son
Religion ..... None
Marital status before ….. Married
Relationship changed? ….. No, it has only been 8 weeks since it happened
Ethnic group ….. White
What academic level did you hold prior to hysterectomy ..... PhD in psychology
Did you / do you smoke ….. no
Mother survived ….. yes
Baby survived ….. yes
Job or career before / after ….. Researcher and University lecturer

Pregnancy

Was it 'normal' ….. yes
Whist expecting did you develop any conditions? ..... no
Where was the birth wanted/planned home or hospital ….. planned in hospital
If a planned home birth why a change of plan ….. not planned at home
If c/s, planned or elective, why ….. c/s not planned
Hospital …… X
Doctor/s ….. X
Previous 'childbirth' vaginal, c/s etc ….. this was my first child birth
Did you want to / plan to breast feed ….. yes
Have you breast fed before, if so for how long ….. no

Labour and birth

Date that labour began? ….. 13th December 2005
Were you induced? .....yes
Date of delivery? ..... 14th December 2006
Problems during delivery? ..... weak contractions
If emergency caesarian why? were you happy with this? ..... weak contractions. Yes, since they had made the water break I was afraid of infection if they would have waited much longer. Although, now I wish they would not have interferred by breaking the water. Perhaps contractions would have started by themselves again later.
Problems after delivery? .....uterus did not decrease itself so I bled heavily

****
1. Where you induced and if so what reason was given? The nurse thought I would be too tired if I did not get some sleep so she did not want me to stay up all night which I probably would have since my contractions were frequent and painful. Therefore she made the water break. Since contractions turned out to be irregular and week after that they gave me contraction stimulating drip. My my cervix never opened more than 6 cm.
2. Did you have an epidural? Yes Did you have any problems with your epidural?no I did not have problems with it.
Any other pain relief oxide mixed with oxygen administered by face mask
3. How long was the first / second / third stage? I guess I was only experiencing the first stage since I stopped dilating.
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? Contraction stimulating drip. They made the water break before administering the drip.
5. Were you allowed to eat / drink and if not what reasons were given? Yes, after I was given the epidural I had some food.
6. What procedures were followed immediatley after delivery? They tried to make the uterus contract and when it did not they performed a hysterectomy because I was bleeding so heavily.
7. When did you realise that there was a problem? Soon after they had taken my baby out since I heard the doctors talking
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? All that could be done said the doctor.
10. Did you have any bi-manual compresions and if so did you have any pain relief? I do not know exactly all the procedures tried. I was put to sleep.
11. Were you conscious whlist they attempted to solve the problems? Yes, in the beginning and I woke up at some time and felt how they were massaging the uterus.
12. Did you ever feel as though you were not going to survive? No, I did not think about that.
13. Did you feel as though everything (ie the staff) were completely in control of the situation? No, since I could hear that they were quite stressed and panicked.
14. Were you fully informed at all times about what was happening and why? No, but most of the time I was not conscious.
*****

Before operation

If planned c/s how long was the consultation? (should be no less than an hour) .…. The c/s was not planned
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 it was not planned, they did not ask me, they just said that they may have to perform a hysterectomy when I started bleeding so heavily due to the unresponsive uterus. It was an emergency situation. If they had asked me I do not know what I would have said. But I do believe that I might have died if they had not done what they did. So I guess they did not have much choice. And it would not have been fair on my baby or my husband if I had refused and died.
If after arrival of baby were you given any transfusion? ….. no, they just gave me one. It was an emergency situation.
What were the circumstances for you to be taken (back) in? ….. I was very tired and pale so a few days after the arrival of my baby they gave me some more blood. They asked beforehand.
If taken (back) in were you told it was for a hysterectomy or warned it may result in hysterectomy? ….. The hysterectomy was performed about 2 hours after the c/s. They did not know this was going to happen, the doctor told me they may have to take the uterus when it did not contract. They then worked on trying to prevent this but did not succed.
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 ..... I have not been abused physically in the past.

During operation

Hysterectomy date ….. 14th December 2005
Were you conscious or under general anaesthetic? ..... conscious in the beginning then they put me to sleep but I do not think with general anaesthetic because I drifted in and out of consciousness.
What did they try before undertaking the hysterectomy ….. the doctor said they tried every known procedure.
How much blood transfused before / during hysterectomy ….. at least 4 liters
Consent specifically given for hysterectomy? ….. I was not asked, no consent given. As mentioned previously, it was an emergency situation.
How many minutes from death, if applicable ….. I do not know. I lost all my own blood and they did not dare to continue after that since it takes a while for the body to able to coagulate new blood.
Did you go into cardiac arrest ….. no
Was your partner/husband told they were going to do it before they did it? ….. yes, he was sitting beside me holding our baby when the doctor said they may have to do it.

After hysterectomy

How did you learn of your hysterectomy ….. I asked straight away when I woke up
Reason for hysterectomy ….. severe blood loss
How much blood were you transfused after hysterectomy? ….. another ½ liter I think. So at least 4.5 liters all together.
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? ….. subtotal, they took the womb
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, I still have ovaries
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, vagina was not pleated.
What incision scars have you? ..... on my stomach
If more than one do you know what was for caesarian and what was for hysterectomy? ..... I only have one
Intensive care/ how long? ….. about 6-7 hours I think
On recovery/ward care? ….. 7 days, that is, I was in hospital a total of 7 days.
Infections post hysterectomy, either in hospital or shortly after ….. no
How was pain managed eg good bad with what? ….. painkillers and that was ok
When expected to fend for self and baby? ….. after a week but I would have been allowed to stay longer in hospital if I would have wanted to.
How were you treated by the staff? ….. some were excellent others not so great but on the whole with respect and understanding.
Did they care for you well? ….. yes
Did they care for your child/ren well? ….. yes
If you were crying were you given compassion? ….. yes
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, surrogacy is not legal where I come from.
Were you told to adopt ? ….. some suggested it
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
Did the physiotherapist see you/ Were you given exercises to make your uterus contract? ….. no
How long was your hospital stay? ….. 7 days
Were you encouraged to stay as long as you needed or not? ….. yes
Were you told how often this happened? ….. yes
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, my mother helped me and still is helping me. But I did not get anyone coming to help from the hospital if that is what is ment by help.
How were you treated by your GP? ….. well
How were you treated by your midwife? …. well.
How were you treated by your Health Visitor? ….. did not have one
If you wanted to go though a process of more children were you helped? ….. I did not ask for such help
Did you breast feed for as long as you wished. If so for how long? ….. I am still breast feeding

Consequences

Your well being ...

Did you bond with your baby or do you feel the operation caused problems? ..... no, I bonded with my baby but it took a long time before breast feeding worked
Do you feel like a survivor or victim?…..I am not sure, a bit of both
Do you feel as though you have been raped? ..... no
Do you still feel like a woman? ….. yes, but perhaps not as much as before the hysterectomy.
Do you feel there is anyone to blame or fate? ….. I am not sure, I wish they had not interferred so early by breaking the water and giving me drip to stimulate contractions. Perhaps contractions would have started again by themselves. I think my uterus may have been over stimulated which caused it to be too exhausted to decrease in size once the pacenta had let go. But these are just speculations.
Are you grateful to be alive? ….. yes, in a way for my son and husband’s sake. But it is of course difficult to know whether I would have died. Perhaps I would have been fine without the operation.
If only caesarian (s) do you feel robbed of giving birth? ... no, it would have been nice to go through a normal birth. But that is not my main concern.
Do you tell others what has happened? If not do you have a reason? ….. I tell people close to me
Any legal action taken? Sucessful? ..... no
If applicable were the police contacted? Successful? ….. no
Have you suffered post traumatic stress disorder? ..... no
Have you suffered a change in depression? ..... no
Do you now suffer from anxiety? ..... no
Do you suffer from sleeplessness? ..... no
Do you have nightmares or have you had, that you feel are associated with this? ..... no

Physical ...

Has / did your menopause start early? ….. I have not gone through menopause yet.
Do you now have or a change in IBS? ….. irritable bowel syndrome? In that case, yes I am constipated.
Do you now have incontinence, if so when did it start? ….. no
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? ….. no
Can you still stretch properly? ….. yes
Has you libido changed (as it altered your sex life)? ….I haven’t had time to think about sex yet so I do not know. So cannot answer the questions below yet.
- if yes is this positive or negative? ..... unknown at this time
- is penetration possible, if so is it painful? ..... unknown at this time
- if applicable are you still able to achieve orgasm, is it the same quality? ..... unknown at this time
- do your erogenous zones still as sensitive? ..... unknown at this time
Do you now have problems (pain / incontinence) coughing and sneezing? ….. no
Do you have regular abdominal pain, either internal or scar related? ..... no
Do you now have a problem with weight gain? …..no
Do you now have a different figure? ….. yes, due to having been pregnant so recently
Do you suffer more headaches? ….. no
Do you now suffer from rashes? ..... no
Do you now suffermore from pains like trapped nurves or something twisted inside if you turn the wrong way? ..... no
If you sffer from cold sores do they now scar? ..... yes, I had cold sores but not scars from them.
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, no I do not think he is a 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) ..... no, not that I know of
Did you think about having your organ (s) returned to you? Any results? ….. no
Have you obtained your notes? Were there any problems? ..... I obtained an account that states what happened. No I received that without problems
Do you beleive they are an accutate portrayal of what happened? ..... yes
Has the doctor gone over your notes with you? ..... he has gone over what happened with me verbally
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? ..... Yes, I had all my questions answered straight away.
If you wish to meet or speak to the pepole involved in your 'care' are you able to? ..... Yes, I am going to see them again tomorrow and go through everything again.
Have you gone back to the hospital if so was this helpful for you? ..... I am going back there tomorrow, so we´ll see. But I think it will be helpful to ask a few more questions.
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 have never thought about it
Has it effected family life, if so how? ..... My husband and I are sad that we cannot have more children.
How has your husband / partner dealth with this? ..... Very well, he is trying to live in the present and is very happy with our son.
How has this changed the quality of your life? ..... I am going to try not to make it change the quality of my life for my son’s sake. But of course I am sad I cannot give him a brother or sister. If he will be very unhappy with being an only child when he grows up I am going to be very sad for him. Perhaps then we will consider adoption.
What are your overall views? ..... I was of course very shocked when i learned that they had to remove my womb and very sad that I can not have more children. I am trying to stay positive for the sake of my son but I have up and downs of course. I will probably feel sad now and then for many years to come when I see friends having their second child ect. Just seeing pregnant women can make me a bit sad since I am reminded that I will never carry a child again.
With hindsight would you have done anything differently? ..... Looking back I wish I had said I did not want them to make the water break. I wish I would have walked around instead since the cervix opened when I did that. I wish I would have had the opportunity to see whether the contractions would have started by themselves again. I am worried the uterus was overstimulated by the drip which may have caused the uterus to be so exhausted that it could not decrease itself to it’s original size. I believe that one should not stress or interfere too much with child birth. Of course it is necessary sometimes, but I wish I had been given more time to see whether things could have happened naturally.
Advice for others ….. All labours are different so it is difficult to advice others. But if you do not need to have a c/s done I think women should give birth naturally. I think it is risky to chose a c/s just because you are afraid of pain. You have to understand all the risks associated with a c/s. If you can give birth naturally I think that is the best.
Any other thoughts or comments? ….. not at this time

If IVF before hysterectomy…

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

More children wanted/hoped for ? If so how many? ….. at least one but prefarably 2

Surrogacy …..it is illegal where I come from (Sweeden)
Eggs retrieved - embryos …..
Embryos implanted …..
Result …..

Adoption ….. I may consider it in the future.

* Linda's account

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