Not all are good stories – Susan’s Story

I was told that if I had a Hysterectomy my health would improve and I would never look back, well I had it on the 20th January, had problems in recovery and spent 4 1/2 hours there.

I was told at 7am the next morning that I needed to vacate my bed as it was needed and to be sent home. Home I went, all ok to start but by Sunday night I was in agony. A Doctor attended me and told me if I was in pain again to call him this was 1am; at 6am on the Monday morning the pain was so bad an ambulance was called for.

They took me to A&E where I was for 6 hours before being transferred back to the Maternity Hospital.

I was in agony and placed in a room to either sit on a chair or lay on an examination bed, neither which were comfortable. I was finally given a bed, and sent for an ultra sound this appeared nornmal.  The nurse came onto the ward with peppermint tea and told me to drink because all I had was chronic wind…

I was sick, temperature, dehydrated and in worse pain than giving birth. the next day I was sent for a CT scan and it appeared that my bowel had been perforated and peritonitis had set in.

Another operation that night, a stay in intensive care and high dependancy before 7 days on the ward. thinking the worse was over I was mistaken when the catheter was removed I had a popping feeling and gushing of urine. It now appears I have a fistula, 2cms big to be precise. All I got from the hospital was i had consented for the operation…. yes I had, but when I was told there may be bowel or bladder problems I automatically assumed it was bruising, not something that could take my life.

I have now had 4 operations and having my 5th operation next week to repair the VVF so hopefully after 10 weeks of a catheter this can be removed in 3 weeks….

It has literally destroyed my life, my self confidence and I know in my heart that if I was told the worse case scenerio I would not have consented and carried on living with the pain and discomfort of the fibriod and mild endometriosis….

Apparently I am special, Ithink its the hospital way of making light of the situation as it happens to 1-600 and I happened to be the 1….

Getting over the hysterectomy has been a piece of cake, it’s just all the risks I am now dealing with, I wish with all my heart the surgeon was frank and honest with me.


in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

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  1. SUSAN,


  2. Well update on my story above.

    After years of fighting with the nhs for funding for a scar revision 2 weeks after we issued our statement of claim and 3 rejections for finding they surprisingly funded my scar revision” I’m attended salisbury district hospital for my operation, a completely different experience only 20 miles away from my original hospital, the staff and surgeons could not have been nicer and although I am at week 7 off work well on the mend. I have also recently had Botox in my bladder, problems brought on by the fistula 3 years 3 months after the hysterectomy and 7 operations later I am now nearing the end HOPEFULLY, THANKS FOR ALL YOUR COMMENTS AND SUPPORT Sue x

  3. My thoughts are with you let me know how they deal with your complaint! I thought peritonitis was worse than labour a pain that will mentally scar me for life x

  4. Well I went to the MP I re-submitted the application for funding for the last op and for the third time I’ve been refused, apparently the NHS do not have to rectify botched scars! Am I really supposed to live with a scar from the belly button to pubic bone when the initial op was laparoscopic ? Enough is enough

  5. I’m really sorry to hear that the NHS has let you down so badly and I do hope that your MP is able to help you fight for fixing the problem. Let me know if I can help at all.

  6. Well I am a year past the 6 operations it took to get me back onto my feet after my hysterectomy stated above, I have been left with an over-active bladder and a stomach which can only be described as a front bum! And after all the NHS put me through last year they have now refused funding twice for the last of to put my stomach back to how it looked before the hideous mishap which happened last year! So now I am seeing my MP next week because when I went back to the hospital on the 1st may they stated because I am taking legal action all funding has now been stopped! But they can give a breast enhancement to a glamour model…. Needless to say my opinion of the NHS has now hit an all time low, and I only took action because NO-ONE said, hey accidents happen were sorry we’ll fix it for you, I look pregnant and I prided myself on my flat stomach for my age… NHS you will answer to me and you will apologise for nearly killing me and wasting a year of my life!

  7. Susan, your story is similar to mine, only you are about to have your 5th op! shocking!!!
    I had an hysterectomy May 18th abdominal! My surgeon told me she had to disect the bowel from the uterus? and the front wall of the stomach? beforw she could remove the uterus and left ovary. I was sent home on the 21st in agony. In pain and running a fever, couldnt eat, or drink, hardly walk and the ‘trots’ for 2 days, my husband rung the GP. after a 10 minute telephone conversation, he told me to take co-codamol!! the pain in my upper stomach was horrendous at this point! I stayed at home till 4am the following morning, thought i was going to die! My husband rushed me into hosp after finding me collapsed on the bathroom floor. After an xray, and CT scan, blood tests etc, i was rushed to theatre. My bowel had ‘kinked/twisted’ so they said, and i now had a scar running from just under my boobs.. meeting the hysterectomy one down below!! the surgeon told me i had about 3 hours to live, if i had not had surgery. I left hosp June 2nd, and last week was well enough to file a formal complaint against my GP and the surgeon who perfromed my hysterectomy! I think she may have cut my bowel during the hysterectomy, and just sewn me back up.. i also feel that my bowel was leaking into my body poisoning me, and thats why i was so ill… dont think it was just ‘kinked/twisted’?? il soon find out when the investigation is under way! I am not going to accept a ‘sorry’ its not good enough! like yourself, i was left to suffer because they need beds? and clearly we are only numbers not human beings! i also came home with chronic diahrea and an ecoli urinary tract infection! pathetic if u ask me. I wish u good luck with your next op, u poor thing. Its now 5 weeks since my second op, and i feel like awful to be honest. Cannot wait to be pain free. xx

  8. Susan,
    I am so sorry to hear your story. I cannot imagine your fear and pain, and wish with all my heart that things could have been better.
    In contrast I feel quite fortunate, but have to say that on the 2nd post-op day I thought I was going to die from something much less serious (or so it now seems) but equally terrifying. I became so nauseous that even a tablet to calm the sickness came back with force, and I had a painful injection which slipped as it was being administered, probably because the Charge Nurse was in a bad temper!
    My nausea continued throughout my stay, and because I was being discharged to an empty house I was allowed to stay until yesterday, Monday, although my op had been the previous Weds. I so much wanted to come home, as what food I could have eaten was so horrible that it made me ill to smell it coming down the corridor!!
    I think I became a “nuisance” patient, though about 75% of the nurses were kind and communicative, but the others ignored me or would not meet my eye.
    I had investigated the possibilities of help at home, and all along it came back to the same thing – “as soon as you can after the op, ask for the Hospital Social Services and request them to contact their colleagues in your home area, then things will start to fall into place.” So, I did this and the nurses said it had been passed along, and nothing happened. Again, some of the senior nurses considered it my fault! The discussions and arguments were circular, getting nowhere.
    I came home in a taxi yesterday at my own expense and request, so happy to walk in the door, I almost burst into tears. I am exhausted, not a little frightened, attempting to get back on my own painkiller and meds routine, and awaiting the District Nurse and maybe then the calling in of some help for a while. I need my late husband so much, I find myself wishing he would come and take me with him this time. When I was nauseous or in pain it brought back so terribly, what he must have suffered without complaint for so much longer.
    So, although I can’t share your dreadful pain and what must be a lot of fear and also some anger at those who messed up (unintentionally) and then ignored your pain (carelessly and unprofessionally), I do empathise with a lot of your feelings.
    Also, although I was prepared thanks to this site and from talking to friends who had hysterectomies, I had decided to do as I was told in the ward. Well, that wasn’t much! They were supportive until the evening of the 2nd day, then I found that if I had not got up very early and performed new tasks for myself I was considered lazy and anything that went wrong was my own fault! So much for toeing the line and following their routine!
    I hope that from now on, every day will see big improvements in your well being, and that things will occur which will enable you once again to trust medical, surgical and nursing judgments.