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Hideous nerve pain following prolapse surgery

Posted , 5 users are following.

deedums
deedums

Ok .... my first prolapse happened in 2008 where I was had my first lot of surgery ... I was aged 51.  I had an Anterior and posterior vaginal repair with SS hysteropexy.   When I awoke from my surgery it was like a million bolts of electricity surging through my body .... any tiny movement caused me such pain I was immediately given morpheine and after awhile sent back to my ward.   For the next 5 days I was unable to get out of bed due to the pain .... it was not getting any better ... in fact it was terrifying .... I virtually laid in bed crying the whole time.   What happened ... this was supposed to be standard common surgery and I wake to find my pain was unbearable and not showing any signs of waning.  The surgeon who performed my surgery never came to see me but his assistant did.   When she would come to see me I would be crying .... this set her off .... she was present at the surgery and everything went fine .... "there was NOTHING wrong with me" and "WHY ARE YOU CRYING ALL THE TIME"??    "do you need a psychiatrist" .... are you having mental issues??   Well, I am not a cryer normally so the pain was bad for me to do so and her attitude was that the surgery went normally and I was "bunging this on to get pain relief"... I had a catheter in and was unable to go to the toilet at all ... I had not done poo for over 5 days yet they released me to go home as they thought I was just a mental patient.  I did go home .... my daughter and husband had to get me a wheelchair as I could still hardly move from the pain and when we arrived at home, they both had to carry me up 5 flights of stairs to our unit.  The next day the pain was still unbearable so my husband called me an ambulance ... it came that evening and I was admitted to the same hospital again but they ended up transferring me to the sister hospital a few miles away where I stayed for another 5 days.   It was only on day 9 that I did my long awaited POO after ingesting more laxatives that I can ever remember and along with major pain killing meds, the pain of the electricity through my body was beginning to get better.  I was then again discharged.   I had the prolapse back again in 2012 where I had "mesh" inserted and it was only last week (2017) that I felt my prolapse drop and thus here I am again .... confirmed it was back by my doctor I am again waiting to hear from a top urogynae about when she can see me.  I have had numerous bladder infections for the last 5 years and intercourse if out of the question ... I imagine the cause is the mesh.... wish I had done better research on every facet of my condition but like a lamb to slaughter I believed everything would be ok .... and even when it wasn't ok why didn't anyone believe there was something wrong after the surgery instead of  "ASSUMING" I was a nut job.  I am again terrified of surgery as my first experience was the worse thing I have ever endured so my question is FINALLY .... has anyone else ever suffered this type of nerve pain following prolapse surgery?   I would love to hear from anyone.  Cheers 

1 like, 16 replies

16 Replies

  • Jan999
    Jan999 deedums

    Posted

    deedums are you in the U.K.?
    • deedums
      deedums Jan999

      Posted

      No Matron, I live in Queensland Australia.
  • christine04905
    christine04905 deedums

    Posted

    As long as I can get along with the pessary, I will try to make it work.I have heard horror stories about the surgery, especially the mesh they use.Some women have had to find a doctor that knew how to remove it to get it removed.It is my bladder that was prolapsed, they called it moderate.i am in Canada.I'm sorry to hear that you are having so many problems.I can live with this for now wth the pessary.It's much better than it was before because i had so much discomfort and just felt awful.

     

    • Jan999
      Jan999 christine04905

      Posted

      I just want to clarify christine that in the U.K. problems with the use of mesh have been addressed by having a closely monitored select number of urogynaecologists now using it. The Department of Health and Gynaecology ensure it's use is limited and the type of mesh that is used now us different to the mesh used in USA, Canada and other countries. I only mention this because the majority of ladies who use this forum are in the UK. 

    • deedums
      deedums christine04905

      Posted

      Thank you Christine.... I hope everything with you will be ok ... I think my experience appears to be on the extreme side and most people are ok following their surgery.  All the very best to you.
  • angela36386
    angela36386 deedums

    Posted

    What an awful experience for you! The most pain I had after my surgery was a horrible pain seeming to go up my back passage after i had attempted to get up and be walked to the toilet. I had to be helped back to bed and then like you screamed and cried for ages which is just not like me. It was a fellow patient who was most supportive. Luckily my surgeon was on the ward and came to see me. He was worried that it was a haematoma but did a very painful internal and found it was alright but gave me more pain killers. How horrible for you for them to think you were making a fuss. It is major surgery and not something I want to go through again so feel for you-I hope it is not as bad as you think and can be sorted out. I am only nine weeks post op and having bladder problems which might mean further surgery so feeling worried too

     

    • deedums
      deedums angela36386

      Posted

      Thank you Angela .... the reason I have joined this forum is for the comfort and knowlege that other people understand what you are going through ... having bladder problems is the worst too ... I really hope everything works out well for you.
  • Jan999
    Jan999 deedums

    Posted

    I asked if you were in the U.K. before I answered deedums. I have experienced this type of reaction only once in the whole of my career and I don't know what happened to the patient because she was taken to the High Dependancy Unit. However it was the days before mesh was used so that wasn't the cause. I think it was put down to a reaction to the anaesthetic. Do you know if mesh was definitely used to repair your prolapse? In the U.K. most urogynaecologists get the patient to sign a separate consent form, I would think it's the same in Australia. You have been very ill and treat appallingly. As a nurse there's no way you would have been treat like that on my ward. You need to try and make contact with ladies in Australia who may have had the same surgery. Is there not a forum in your country similar to this one? I suppose you could also start a group on Facebook. 

    • deedums
      deedums Jan999

      Posted

      Do you know that I really don't know what they did to me on my first operation.  I don't think they used Mesh because my second gynaecologist couldn't understand why they didn't (he had my operation notes in front of him), so he suggested it would be the best option to again repair my prolapse .... the second op went off without a hitch .... awoke from surgery feeling fine .... two nights in hospital and I was home by the third day and the usual rehab few weeks at home and then I was back at work and living a normal life again.  That was almost 5 years ago so I guess I should be grateful I got that amount of time out of the second surgery, although my bladder was never the same (dribbling urine instead of normal stream) and I was often unaware I was not emptying properly so I was forever getting UTI's.  And I don't know why, but I was also unable to have intimate relations with my husband as the pain was too much .... he is very understanding and to this day respects my problems but ... isn't it funny .... I was so terrified of the same thing happening the second time, that although I also suffered these other problems (urine and lack of intimacy), I find myself "grateful" I was not in the same agonising way as the first time.  I am waiting to have my appointment with my new gynaecologist ... I am off for a month holiday treking through Africa so I am afraid of not having this all "fixed" before I go in May.  My concern there is that I will be "bouncing around inside a truck" (as I have done before) and I don't want to be in the middle of the Namibian Desert with my prolapse causing pain and problems!!   Don't get me wrong ... I love life and in the big scheme of things I am nowhere near the dire problems of a lot of other people, but this forum has just given me the opportunity to express myself to others that may understand what I have been going through.  Wish I could be in your ward Matron .... you sound amazing!

    • deedums
      deedums

      Posted

      Also, based on how much pain and the type of pain I was in, it has since been suggested to me that the doctors at the time of surgery may have inadvertenly "picked up some nerve endings" when they stitched my prolapse to my pelvic bone.  I shudder every time I think of it!   

    • Jan999
      Jan999 deedums

      Posted

      You have a very active, lovely life deedums. I'm retired now from nursing but I am still involved with the urogynaecology department so I have to keep myself up to date. I've been thinking about everything you suffered and I thought about injury to the nerve endings but the nerve endings are cut in all surgery and your pain was extreme to say the least. I'm going to ask one if the consultant's next week if he's heard of anything like this and I'll let you know. 

    • deedums
      deedums Jan999

      Posted

      Thank you so much.  Appreciate your support.
  • cookienz
    cookienz deedums

    Posted

    Hi deedums, so very sorry to read of the ordeal you went thru first time round, something matron mentioned has me thinking, about the

    ?anaesthetic. I wonder if you had a reaction to it. Can you find out if they used the same anaesthetic for both operations? as if they didn't Id pretty much be insisting on having what you had second time round. My husband and his family are very allergic to anaesthics and the gases.

    ?I am so sorry to hear that you need to go thru all the stresses of having another repair life can suck at times but at least you have a trip to look forward to

    • deedums
      deedums cookienz

      Posted

      Thank you Cookienz .... I never thought of the anaesthetic because the pain was seeming to come from my pelvic area and shot through my entire body when I moved one inch..... but thank you .... I will definately look into it ....  between you and Matron you have got me thinking to definately investigate.  Can you tell me the types of allergic reactions people can have?   Thanks again
    • cookienz
      cookienz deedums

      Posted

      You are welcome, I,ve had 21 operations now myself mostly on my mouth as born with a cleft palate and cleft lip. I have never suffered from the anaesthetics used but my husbands father died when he was given a general anaesthetic. He had broken his jaw whilst trailing for the Maori All Blacks after that they discovered he had malignant hyperthermia​. Pretty much what happens I think is the heart beats too fast and they overheat and die. It would be interesting to find out if you had different types of anaesthetics for the 2 ops cheers Kath
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