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Mixed incontinence, TVT sling and Botox

Posted , 5 users are following.

claire1971
claire1971

I had mixed inconinence for nearly 12 years and got worse.  I had a TVT sling fitted December 2013 and I feel like it is cutting me and it makes me feel sick. It has helped the the stress side of it but not the urge side which I am on tolterodine 2 mg twice a day.  If these don't work then it's (kentera patch) and then Botox.  Depressed is not the word.  I am on so many pain killers as the urologist pulled my back while I was in surgery which doc has sent me to pain clinic to deal with.  Has any one had the TVT sling or Botox if so what is it like for you as Dont want to go any further without finding out.

1 like, 17 replies

17 Replies

  • KathS
    KathS claire1971

    Posted

    This TVT sling sounds awful, especially as it hasn't cured the problem.  I was offered something like that years ago (some sort of a sling anyway), but I refused as the problem was more or less 'put-uppable-with' at the time.  I didn't like the sound of the possible adverse outcomes they listed!  Lately, I have been thinking about asking about it again, but your story is making me have second thoughts.  I think I may have already been on tolterodine as it sounds very familiar.  Must not have worked on me.   I'm already on morphine (tablets & liquid) for back pain caused by natural wear & tear I'm told, but I'm not entirerly convinced as the first x-ray on my back said it was good for my age.  I used to do a lot of hill walking and have walked the 3 peaks of Yorkshire within the timescale allowed for a certificate.

    I hope you get sorted soon and best wishes for any future surgery.  Please let me know how you go on, and especially if you need to try the Kentera Patch (never heard of it) or Botox.How does Botox work? 

    • claire1971
      claire1971 KathS

      Posted

      Hi thank you for your reply.  I not sure if the tolterodine will work as just started them nothing else has and the patch is the same as a tablet but in a patch you put on your buttock and lasts 3 - 4 days.  And Botox is injected into the bladder and as far as I can gather it stops from weeing and have to self catherterise but that won't bother me as I do that now.   I should of looked more into the mesh TVT sling as I was active ran a stud yard rode horses etc and now a cripple.  Sorry that's the way I feel lost my life since this opp and now can't even have my 2 very young grandchildren when I am on my own as I can't bend down, can't get up when I finally get sat down comfortably my worse mistake was this sling.  I do have a good urologist which is investigating the cutting pain. Just wanted to know more of other people who has had it fitted and the Botox so when I go back the 5 December I can ask more ?'s to her 
  • pat17497
    pat17497 claire1971

    Posted

    Hello Claire,

    I am so sorry to hear of your problems. I had a sling fitted in 2008 and it did help and hasn't caused me any trouble. The urge side is not so good, and the sling dosen't always save me from leaking when that happens, but I can do my keep fit without leakage now. It sounds as if it hasn't been fitted properly or maybe you are sensitive to it. You do need to get it sorted. I have not had Botox I might worry they put too much and I couldn't go at all! My problem is the anticholerginic drugs that don't suit me as much as they do the job. It is a horrible problem to have and I do feel for you good luck.

    Pat

    • claire1971
      claire1971 pat17497

      Posted

      Hi thank you for your reply.  I am glad to hear the sling worked for you, the urologist was skeptical about it as i suffered for so long (12years) not that I didn't seek help all them years ago, I did, but the other hospital said because I have mixed inconinence they couldn't help me. So I just plodded on wearing pads, self catherterising and i work at home so could change my clothing.  But now work is impossible as I have a stud yard and handling horses is a big problem. My marriage is on the line as everything in the bedroom has gone as sex hurts so much. My hubby works 12 hrs a day now 7 days a week if he can to just be out the house and when there is no overtime he is out fencing or doing something.  My gp, back doctor and urologist is working very close with me to help make things better.

      The Botox which is said every appointment is really scaring me as I don't think this sling can come out now and with Botox as well will put more pressure on sling and make it worse. the sling has worked i can cough, sneeze etc with no leakage just feel it's cutting me in side like a razor blade. It even hurts me when I sit as of the pressure. 

    • claire1971
      claire1971

      Posted

      Things have now gone from bad to worse.  Woke up on Friday to take my 15 yr old daughter to school, and couldn't get up with the pain, doctor called and came out upped my pain killers and explained she cannot give me anything stronger but next step is 999.  5.30am Saturday woke up screaming 999 called gas and air and morphine given in ambulance and a&e. Doc said go home as can't help me. Read threw urologist notes and he can make out its either attached itself to a nerve or cutting threw a nerve and sent home with a bag on my leg. Can my life get any worse.  Appointment with back doc on 30th October and an emergency app with urologist brought forward to the 31st October from 5th December.  fingers x she does something instead of fobbing me of 
  • letsy39
    letsy39 claire1971

    Posted

    Hi Claire so sorry to hear what a difficult time your having.  I had a tvt procedure nearly 6 weeks ago, unluckily for me it seems to have increased my problem instead of improved.  Hospital have said they won't see me again until 6 weeks post surgery.  I understand this but at the same time, my life has taken been turned upside down even more than prior to surgery.  I too got some toothachy pain all in my right side and down my leg which isn't too bad but hoping that doesn't increase as the tape wears in.  I feel very down and very aware of 'leaking' all the time, I thought it was bad before but its twice as bad now.  I don't feel that people can understand how uncomfortable and 'dirty' this problem makes you feel.  I really hope that you get some answers soon and relief. 
    • claire1971
      claire1971 letsy39

      Posted

      Hi I am so sorry to here your TVT sling did not work.  It's not that mine didnt work just caused nerve and cutting feeling problems but has got worse to the point I cannot lean Over to self catherterise as of the pain.  It started in my right hip/leg now it's in my hip leg and right across my lower back I hate it.  Tell your gp an keep going back and tell your urologist do NOT be fobbed of that this is normal the sling is in the middle pelvic of your tummy if that makes sense not in your hip/leg.  Please do not wait for months like I did as I am sure someone has told me on here somewhere the sling can only come out if caught in first 2 - 3 months.  Watch for urge incontinence as the sling also causes that.  If I can help in any way please don't think you are bothering me I will help if I can xxx
    • letsy39
      letsy39 claire1971

      Posted

      Thank you for your reply, I just feel very low, I waited for four years to do something about it only to end up worse and in some discomfort too. I'm going to ring again in the morning and see what they say happens next. I will keep in touch. I hope u have some good luck too.
    • claire1971
      claire1971 letsy39

      Posted

      I feel like I am past help now and don't feel like any one can help me but if I can help others then I feel I have achieved something out of this.  This sling I believe is banned in scotland as of the failure rate and people being hurt by them. 
    • claire1971
      claire1971

      Posted

      Well today I go and see urologist and demand answers.  I feel like no one is telling me the truth.  I just want this thing out of me.  Got the catheter out on Wednesday with various tests the urologist wanted doing.  Asked ?'s but no answers.  I can't stop thinking about the a&e Doctor saying the sling is either attached to the nerve or cutting threw it.  Told my mother the same thing at the desk. 

      Scared .com.  Got my grandchildren this weekend but can't have them on my own so my 15 yr old daughter cancelled her weekend for me.  Give me a lift if nothing else.

    • pat17497
      pat17497 claire1971

      Posted

      Claire do hope you can get this sorted.  Fortunately I have had no trouble with my sling, and long may that last! They can't leave you in this state,so keep shouting loudly!

      Good luck

      Pat

    • claire1971
      claire1971 pat17497

      Posted

      Thank you pat. I am really glad it's worked for you. Having a really bad today with it so maybe a call to hospital again.  Getting depressed and fed up buy got right advice to help me now so hard brain work from monday.  

      Thank you claire x

  • claire1971
    claire1971

    Posted

    i been back to urologist and asked her for a scan to see where this tape is and she refused.  i asked her to take the tape out and her reply was she can only take the centre out.  i have been back to my gp and asked for a 2nd opinion and appantly she has to ask my consultant which i think she will say no.  Does my gp need her permission for a 2nd opinion.
  • gillian81509
    gillian81509 claire1971

    Posted

    hi Claire 

    I have been reading these post with a mixture of alarm and relief

    ​I have had incontinence of varying degrees since at least 1992, repeated appointments with urology nurses consultant each getting me to do the blasted wee test and now it’s gone from stress to urge to something else over sensitive mean the bladder contracts when it wants to and pee’s

    I was offered a sling but my weight prevented that and now reading these stories I won’t be going down that line

    I was offered Botox can’t imagine having to do that somehow goodness knows how you self catherterising 

    So I can't take medication as I am on heart medication and it’s contraindicated

    So guess  its  thick pads for ever as i am not trying any of the above, wow there goes my love life for ever great!

    i am so sadened to hear about your problems though it sounds awful,  and i really hope they get you better soon . 

    • claire1971
      claire1971 gillian81509

      Posted

      To me you are lucky one.  I have had to pay for a private self referral Translibial scan of which my gp and consultant said no to as its waste of money time and won't show nothing.   When it has shown partial erosion a twist in the tape and the anchor/arm is situated in the wrong place.  Just sat and cried as they still don't believe me and I know what this thing is doing to me. My consultant who put it in never told me after 6 weeks it hardens and is not meant to come out and even that she can't take it all out just the centre.  I have hit rock bottom now with pain and being so desperate and not 1 medical department listening or that could do anything anyway    I wish I didn't have it.  
    • gillian81509
      gillian81509 claire1971

      Posted

      Hi Claire 

      I am and v saddened about your situation 

      have you Thought of complaining 

      the nhs provides an advocacy service called poWher they give u help attend meetings 

      u need to look up NICE guidelines on all your concerns plus research 

       Let me know if you need more help 

    • claire1971
      claire1971 gillian81509

      Posted

      Thank you  I will look them up and have a read on them.   I am researching all the time.  Got my medical notes from gp and 1 hospital who cancelled the operation in 2006 and awaiting on the medical notes from which i had the operation.  As to go further forward now I need all the info on the sling implanted ie: serial number, manufacturer etc.  I will certainly be back in touch if I need any advice or help.

      Thank you again

      Claire 

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