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  • #109834

    MrsDJB
    Member

    Hi – this might be a silly question or impossible to answer but if you don’t ask…….I don’t know a lot about all things prolapse – knew chances of having one after TAH increased but that’s about all.

    Are you at greater risk of developing prolapse early days or is it more likely as you get older etc etc???? I’ve seen conflicting answers on this on the Internet!

    I’m 6 weeks post op & have been advised that my chances of developing a vaginal prolapse are further increased because of some specific issues. I have a Physio schedule & I understand a monitoring plan will be set but I’m freaking out, and I think it would help if I knew if it was something I would likely face soon or in the years to come.

    #109835

    jill b
    Member

    Hi DJB I think alot depends on how strong your pelvic floor/tissues are and whether you kept your ovaries or if youve been taking hrt etc.

    My prolapses started at the age of 59 Im 64 now ,but my hyster was almost 30yrs ago and I did keep my ovaries but started the menopause at age 47 and still continue to have the hot sweats etc, and I also havent had hrt.plus I have done several heavy jobs with heavy lifting involved.

    I think yrs ago you were never told about these prolapse issues ,but the more informed you are you can make better decisions regarding jobs that can eventually affect you and your health,I have only been given information after the event so to speak.

    I continue to do my pelvic floor excercises in the hope that it will eventually help the leakage probs that im dealing with apparantly a by product due to the sacrolcolpopexy ive had ,try not to worry as after my hyster my pelvic floor did last almost 30yrs but had I BEEN GIVE INFO REGARDING EXCERCISE/EMPLOYMENT etc maybe it would have lasted a lifetime who knows ,good luck with the physio. best wishes Jill b xxx

    #109836

    MrsDJB
    Member

    Many thanks Jill B. I’m 40, had both ovaries removed and am on HRT. My pelvic floor isn’t good due to some childbirth complications from 2004 & 2012 but to date haven’t had problems with prolapse or leakage, but they are saying that given The existing childbirth issues and now TAH I’m at a big risk.

    As you say I will keep up with Physio – I’m lucky to have private care so am getting regular appointments. I think I will try to read up on the symptoms so I know when to ask for help and then try & put it to the back of my mind and hope it’s a good few years off(if at all).

    #109837

    jill b
    Member

    Hi just an update as been in some pain these last few weeks, its the same pain re-before they put me on antibiotics which have been helping for a few months now,Just feel overwhelmingly disappointed if my probs have returned.

    Been to see Gp whos given me loads of ibruprofen which I seem to take for a few days the pain improves but then comes back so she thinks its inflammation of some kind.

    She is going to write to consultant again for me to be seen but hadnt recieved the last letter in Sept so I have had to take mine up to be copied,but worried she may decide against as it does say removal of the mesh could make things much worse and the prolapses would still be present and prob need sorting too.

    So doesnt read to good and makes me down cant believe Ive been fighting for some comfort all this while but trying to be hopeful of some sort of solution.love to all Jill b xxx

    #109838

    jill b
    Member

    Hi me again would be nice to hear from others that used to post just to catch up with how youre all doing.

    Received appointment today to go back to see specialist inn Oxford end of Feb,totally don’t know whats happening with my inside as had afew days of no pain at all so hoping that its just been a blip and that its not going to return.

    Just makes me feel a fraud when it seems to disappear, but then it could just as easily be back again next week.so will just have to see what happens between now and then.

    Seems a bit of a long lonely road if everyone else from August 2014 is in a better place than me ,just trying to do things on the good days and making the most of them. love to all ,Jill b xx

    #109839

    jill b
    Member

    Hi to anyone still on here ,had a rotten week after probs inserting vagifem pessaries and being extremely sore now the pulling pain has returned,no one seems to know why this happens but every 6-8weeks it seems to return sometimes just for afew days and other times has lasted 3 weeks.

    Im still on the permanent antibiotics so really don’t no whats happening, at my last appointment down Oxford the Doctor I saw (not my consultant) said he thought it would improve but 20months on and it still following the same pattern,6-8 weeks of being fine and then wallop im back to staying in sore to walk and wanting it to just go away,and lifes on hold again.

    WE have booked for just 3 nights away in May but if Im like this then it will have to be cancelled. My bowels are still not right after this sacralcolpopexy op and on laxido daily even though Im eating loads fruit n veg n grains etc.All saying it wont be related to the op ,but Iwas never like this before.

    Ifeel all the pushing down trying to open my bowels has some effect and strain on the mesh causing these pain flare ups,but no one wants to listen,I will see what happens with gp appointment on tues ,sorry for the moan but needed to tell someone today, Ifeel totally different when pain has gone and bounce back like there was no prob at all. lots of love Jill b xxxx

    #109840

    juleskirk50
    Moderator

    Hi Jill,

    It’s ok to moan we all need to sometimes !! you are putting up with so much and I really wish something could be done to help you get this fixed once and for all – it seems you’re just getting passed around but nobody really is doing anything – maybe you could stop the pessaries for a while until down below feels a little better ? And also to try not to strain when moving your bowels as the straining is definitely not good for you – have you had a wee look at Michelle kenways site she has really good info to help making moving bowels easier she is an Australian physio who specialises in women’s health and is really very good – perhaps you could pick up some tips there ??

    Good luck for your GP appointment on Tuesday and let us know how it goes. Try to have a good weekend and I hope you feel a little better soon. Xx

    #109841

    jill b
    Member

    Hi Julie and many thanks for you reply ,yes I have looked at several things on Michelle Kenway’s site include the bowel suggestions,dont seem to be able to go at all if I adopt her positioning ,it seems Ialmost have to lean back to go as if theres a kink or something in my bowel,oh what a subject,Ihave not used the pessaries this week

    Will see what the GP says n thanks again .Love Jill b xxxx

    #109842

    Doolou66
    Member

    Hi everyone. I’ve just come across this forum and wondered if I could add my story? I had LAVH and BSO on 28th January 16. Reason was endometriosis. Had ablation and endo sorted in 2008 laparascopically, changed my life totally, I was a new woman after 6 years of misdiagnosis. Anyway the endo came back, and I thought nip this in the bud before it ruins my life again. Consultant said hysterectomy was the only option for a successful outcome. So I went for it. 3 months later I went under the knife, and was quite positive in the early days. Thinking I would be back to my ‘old’ self within a few months. After about 3 weeks I knew something didn’t feel right. GP said a slight distortion probably due to surgery, but to carry on with pelvic floor exercises, if no better come back in a few weeks. 6 weeks post op, went back, saw locum, asked for HRT as flushes and night sweats were unbearable, he said all looked ok, but got Premarin. Twice more that week was going crazy with having to wiggle to wee, and lumpy feeling in vaginal area. Another locum said all looked ok, and even though I got an emergency gynae phone number for referral from consultants secretary, wouldn’t refer me. Tried out of hours doctors 2 days later as was really losing it by this time, couldnt refer me as not my gp. Finally managed to get an emergency gynae appointment 3 days later through the back door via consultants secretary. They diagnosed a slight anterior prolapse, gave me vagifem pessaries and referred me for physio. I went to physio this week. Carry on with pelvic floor exercises for 6 weeks, advised me regarding fibre n fluids go back in 6 weeks. I’m now 13 weeks post op. I am absolutely devastated to be honest. I was never informed of the risk of prolapse pre surgery. I don’t have children. I used to love the gym, it was my sanity and ‘me’ time, gardening and not light stuff! I now feel I have had my life stolen. Sorry for being a bit over dramatic but that really is how it feels some days. All I seem to think about now is fibre, fluid and pelvic floor! There was no follow up appointment after surgery, and doesn’t appear to be any joined up care or thinking. I wish I’d never had it done. Can anyone tell me from experience please, do you ever have a life when it isn’t taken over with thinking about it any more? I’ve read about the repair op’s and it just seems that option is a longer life sentence. I so want to be the active carefree old ‘me’ again. Thank you if you managed to stick with me. Oh I turned 50 a few weeks ago, fortunately that was quite a good day, and I said sod my pelvic floor for that day! X

    #109843

    jill b
    Member

    Hi Doolou 66 Sorry that you find yourself on here believe me I know how you feel as I feel just the same although Istarted on this prolapse journey when I was 59 Im now 64 and feel my life is passing me buy too,My prolapse have all been fairly large and my probs seem never ending.

    Ihave got friends who’s prolapse has been smaller and they have been completely fixed by surgery so we are all different and you may be total opposite to me,but I too would like the old me back ,walking,holidays,dancing etc it does seem to be a grey area once you’ve got probs after surgery ,Im still hopeful for a conclusion to it all,this site has kept me from going mad ,have you been on the hystersisters site a lot on there with info etc .lots of love ,Jill b xxx

    #109844

    Doolou66
    Member

    Hi Jill b. Sorry you’re still going through it, and thank you for your kind words. I hope there is a positive outcome for all of us. Life is so unfair at times isn’t it. As you say we are all different, and I am fortunate in many ways. I know we are all fighting our own personal battles which are enhanced by our lovely hormones too. Hugs and positive vibes eh? xx

    #109845

    jill b
    Member

    Hi Just reporting back after visiting the Gp ,not much to report told her Id been in pain n soreness n difficult to walk etc,but today things seemed a little easier.

    She didn’t want to examine me as you need a double appointment to be examined, ( who knew)not me,so she still thinks it could all be down to inflammation,but why it all comes on again n again with several weeks of being fine in between she doesn’t know.If no better to go back in approx. 10days on a double appointment to be examined,but if it seems to be better then just to mention it to the gyno consultant in june when I have the uro diagnostics testing.

    So just hoping it all subsides gradually over the next week ,but still fed up of no clear answers, love to all Jill b xxx

    #109846

    jill b
    Member

    Hi ,well after thinkin things were somewhat improved yesterday and not to bad this morning, Idecided to venture out for a coffee with hubby and little walk around garden centre,not a lot of activity involved and just feel like prolapses have returned.Just sat down n cried n cried ,so back to just sitting again .cant even be bothered to do my pelvic exercise after religiously doing them for nearly five yrs.What is the point nothing seems to work for me ,been looking up if you can still get further prolapses after this sacralcolpopexy surgery and yes you can ,finding it difficult to even think about what to do next ,suppose I still have to wait even to be examined,so tearful and cant see any way forward,maybe tomorrow I may feel different ,sorry for the negative post,just feel Im not meant to get through this how can I be like this when my lovely daughters baby is due in July IMnot goin to be any help whatsoever,is there any one that’s had as much surgery as me and had a good out come.Love as usual to all reading . Jill b xxx

    #109847

    juleskirk50
    Moderator

    Hello Jill,

    My heart breaks for you Jill you seem to be going one step forward then suddenly two steps back I wish I could do or say something to make you feel better and don’t blame you for being so down it must be so disheartening for you – I would get a double appointment with your GP for examination and see if she can see what’s happening and take it from there – sending you healing hugs and hoping you feel a little better tomorrow xx x

    #109848

    jill b
    Member

    Thanks Julie ,Yes I made double appointment its on the 11th life’s just on hold again ,seems any sort of movement just makes things worse ,feels like Ive just had the op not 20months down the line.

    Thanking you for your good wishes . Jill b xxxxx

    #109849

    jilly b
    Participant

    Hi just an update after visit to GP and a quick internal which really hurt but not much to see apart from this atrophy that ive got ,but spot bleeding from this as now stopped,she thinks all she can advice is a trip back to consultant,which Ive had to ask for as given an open appointment last time.Not heard anything more yet seems dire pain n pleading for help still doesn’t get you a quick appointment ,maybe if I rot from the inside to the outer they will finally do something,sorry rant over.

    Having said that today is the first day for weeks that ive been able to walk around the house a bit better, so the appointment is bound to come when everything has subsided yet again, hoping that an appointment comes this week ,thankyou for listening and support, oh my name is back to jilly b after being locked out xxx

    #109850

    jilly b
    Participant

    Hi all just an update after visit to local Hospital re -urodiagnostics ,well after a long wait and feeling more n more anxious finally went in at around 5oclock after discussing things I was told that he doesn’t do the diagnostic procedure unless he is actually operating on you,and with the problems I already have doesn’t think its advisable as even the insertion of a catheta could cause an infection ,so he wants me to go to see the incontinence team there for electrode treatment ,think its an electrical stimulant into the muscle not sure if that means the bladder,anyway will prob have a wait of 3-4 months for that.

    Imentioned the recurring pain an inability to even walk about when I have these 6-8week flare ups and said I cant get to be seen by anyone even given an open appointment still have to wait months ,to which he nodded and said by which time it has somewhat abated.So although agreeing with you seems they cant do anything other than follow procedure.

    So my next appointment is down Oxford in July to see if they can offer any solutions ,so still with the same prob of if the mesh is removed they don’t know what if anything can be done to hold all these prolapses up and in place,the consultant did say yesterday that she is one of the best in that field as it is not his area of expertise.

    Whilst in a way I was relieved not to have any instuments inserted down below, I wa’snt even examined , feel like when it gets to the end of the day they just want to be on their way home.

    I always think its a bit odd at my local hospital too as there’s always 2 nurses just stood in the room all the time .never have this at any of the other hospitals ,sort of feels like its a bit intrusive but perhaps that’s just me feeling a bit self conscious.

    Anyway love to all ,Jilly b xxx

    #109851

    jilly b
    Participant

    Hi not sure if anyone still looking on here, feeling rather alone as my journey continues.Well actually saw my consultant down in Oxford yest and finally examined,she found that the bowel wall was somewhat prolapsed again (3rd time) explains why I’m so uncomfortable and why the vagi pessaries will only go in a short way,and thinks the flare ups of pain which were debilitating in April/May time are due to inflammation around the mesh.

    She is still reluctant to do more surgery at the moment preferring to manage symptons and would only do surgery as a last resort.

    So ive got to take laxido still everyday and continue on antibiotics and double the pain meds when I have the pain flare ups,so really in short I have to struggle on being uncomfortable,cant walk far, cant exercise apart from pelvic floor ones, no lifting ,not much social life with all these issues,but trying just think it is what it is,Ive been given another open appointment so at least that’s something if things worsen,can see her and that’s a bit of reassurance for me ,so tryin to go about as best I can and that’s prob about a couple of hrs for me at atime n then resting,wishing I could go back in time but will have to brave it out for what the future brings. lots of love to anyone reading.Jilly b xxx

    #109852

    jilly b
    Participant

    Hi to anyone still reading on here,really wish I wasn’t still writing,

    Well after yet another uncomfortable week and what with this bowel prolapse seeming to come down and absolutely fill my front passage after Ive had a wee or opened my bowels ,I feel Ive just given up hope of it ever feeling any better and yet my fifth summer of misery and not being able to just live a normal life.

    I decided to send an e-mail to consultants secretary telling her that thought my prolapse was worse and I couldn’t carry on this way,so here I go again waiting for appointment which will prob be months away but at least I feel Ive done something .

    If a third surgery for the prolapse wont hold up again there must be options even if it means having it out and having a stoma at least you can walk about with that, sorry for the negative post and thanks for listening .Love to all Jilly b xxx

    #109853

    Doolou66
    Member

    Is anyone still around on here? Lol! I thought I could give an update on my situation. I thought I could live with my body with its discomfort etc. Went back for a second physio appointment, and she spoke to me like I was a child. I cancelled the third appointment. I’ve been trying to get on with life, but got to the end of July, and went back to my gp and asked for a gynae referral. Earliest appointment was 13th Sept with a man I’d never come across before. My surgeon was unavailable until November, I thought at least it’s someone, the first consultant I’d seen since my op in January. So…..after a quite brutal examination, with no apologies, he said everything is where it should be. It could be adhesions, but that’s part of surgery. Go and jump around at the gym. I suggested urology, he said I wasn’t incontinent, no. So I came out, thinking I’d been depending on this appointment for some sense but to no avail. So I made a private appointment to see my surgeon. I saw her on 4th October. After being so understanding, listening and caring, and a careful but thorough examination, she believes I have a moderate anterior and posterior prolapse, and possible endometriosis or adhesions sticking things together. I guess the good news is my vault is still up there! So much for jumping at the gym! Within 10 days I had an ultrasound and am back on the NHS list for surgery. I know it’s not life threatening, but I really am struggling to accept this situation. I am 50, no children, always been independent, crazy, hard working, enjoying life to the full, love the gym engaged to be married (again), and feel I’ve lost my femininity, sex life and confidence. Has anyone had a successful and long term repair? Will I ever be me again? Thanks if you’ve read my story, any advice would be appreciated x

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