lack of information

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I had my bladder repair just under 3 weeks ago and found these weeks to be a lot worse than when I had a repair 5 years ago. That was done with stitches,this has been a mesh repair. I think the shock of the op and being discharged too early,I think, has added to worry. I still feel smelly due to discharge or blood and worry when I open my bowels ( never been constipated before!) Felt really low and tearful this time as well. BUT...I have felt much better for the last 2 days and feel more positive...I feel for everyone on here. We really should be given more info when we leave hospital...NHS   take notice!

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38 Replies

  • Posted

    Hi eve,

    You are so right there is not enough after support or realistic advice, there are such a wide range of different experiences and variations on surgery, even the leaflets are very general (a narrow window of what is the norm ) . Everyone's health and ability to heal at different rates. It is so good to have this site where we can compare experiences, it allows us to see what is to some extent a normal experience and what might be something to worry about. Phyl xx

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  • Posted

    Hello eve. If you've read any of my previous posts you will see how shocked I am about the lack of information on discharge. Having said that many NHS Trusts, mine included give excellent written information. I'm currently working on post op care which hopefully will be taken onboard by all trusts however by using this forum and good old Google you can access a lot of information. I'm pleased you are starting to feel a bit better. I know the first few weeks can be painful and emotional but there's a lot of support here on this forum.
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    • Posted

      It was being on this forum that made me think something had to be done because I presumed, wrongly that every NHS trust was the same as mine. So I contacted a few people I know at my local hospital and we set up a group to look at improving the information ladies received on hospital discharge, in fact we are recommending it's given to every lady when they attend the outpatient appointment when the decision is made that surgery is the best option. I strongly believe that is important so you can be better prepared especially when there are children to be looked after and any other plans to be made.
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    • Posted

      Hi again I am doing the exercises I found out about my problem five weeks ago maybe more and I'm finding it hard to walk for any length of time it's so depressing so what I'm going to do is I'm doing vertical pelvic floor exercises did anybody do this or find a good pelvic floor expert online to help them with this i'm trying to avoid surgery (using Siri !)

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  • Posted

    Feel for you Eve. I had the mesh as well and 11 days post op. This forum has helped me whenever I have felt a bit wobble and kept me thinking positive.

    One thing for sure is taking thinks very slowly, even though I feel alright in my self. Still smelly and nervous when I open bowls.

    Took someone's advise today and put a wet towel in freezer to help bring down the swelling. Do hope no one goes to my freezer. 🙈🙈

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    • Posted

      Thank goodness there are people on here to chat with....haven't had to use the freezer as yet but anything is possible!cheesygrin
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  • Posted

    Anyone used KEGELS?
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    • Posted

      If you're in the UK worried ask for a referral to a physiotherapist who specialises in pelvic floor. That is the only way you can ensure you are doing your exercises correctly because they have the correct  equipment. That was the reason I asked if you are in the UK. What would be even better would be if you can ask your GP for a referral to a Urogynaecologist (you are entitled to a 2nd opinion so don't be fobbed off) who has probably at least one specialist physio as part of his/her team. That way you are killing 2 birds with one stone, you see a consultant and get expert advice and his opinion. Remember most GP's have only had very minimal gynae experience.
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    • Posted

      Hi Matron

      Thank you for your reply. I'm in uk and have been on the Gyno Physio lost for 2-3 weeks. I've made another appointment to see the GP who I wasn't that keen on and I told her I need to come back and see her because basically I'm having trouble walking ....

      Thanks

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    • Posted

      Trouble walking is enough for a referral as far as I'm concerned and I'm pleased you are waiting to see a physio but as your prolapse is quite low I'm unsure as to how much exercise will help now. I really think you need that referral and let a Urogynaecologist make that decision.
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    • Posted

      I'm not going to give up on the exercises I've got nothing to lose

      Anybody know anything about soya and oestrogen?

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    • Posted

      I don't suggest you give up on exercises but if your prolapse is causing walking difficulties then it would take years of doing them correctly to help. Any specialist physio will tell you that reading books and watching videos can never guarantee you're doing the exercises correctly. What do you want to know about soya and oestrogen?
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    • Posted

      I had a prolapse bladder for quite a few years,,,there were times when I could not walk any further than 100 meters...I have had exercise pelvic floor and also pessaries fitted. I didn't get on with either of these....but you can't go far wrong from doing execises if done properly.

       

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    • Posted

      The last thing I want is surgery that will leave me Incontinent after having 4 years of success
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    • Posted

      Why would surgery leave you incontinent? I think any lady on this forum reading your post will now be panicking. 
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    • Posted

      That's exactly right if they are done properly. Which is why most Urogynaecologists suggest women see a specialist physio. 
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    • Posted

      I read many posts on here where women are having bladder & bowel issues.

      Sorry but my doctor told me this is one of the side affects ..of the prolapse op.

      Like you say I'll see the consultant and see what he says .. Above all I don't want surgery.

      I'm seeing a chiropractor to have my pelvis aligned as well.

      As for soya apparently it's a natural eustrogren ..

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    • Posted

      I've been on this forum for about 4 years now and worked in gynaecology for almost 40 years and have never come across incontinence (urine and faecal) as a side effect of prolapse surgery. If a consultant says it is find another consultant.

      Soya is not recommended as much as it was a few years ago. There are some concerns regarding it. Some Urogynaecologists prescribe progesterone pessaries prior to surgery particularly in post menopausal women who are suffering vaginal atrophy.

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    • Posted

      Oh really?? Well in that case, I thank you for your information Martron. If this is the case I feel more hopeful. smile I've been so down that it's ruined my life.

      May I ask you if you are a patient yourself and if you have could you share your experiences please ..

      Thank you

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    • Posted

      I had a rectocele and cystocele repair over 5 years ago. Of course I knew what to expect because of my experience in gynaecology. I had a lot of pain following the surgery although I consider myself to have a low pain threshold but once I'd sorted out my pain relief things improved. I was in hospital for 3 days and went home with a lot of support from my recently retired husband. Through rest and doing as I was told I went back to work after 13 weeks but on a graduated return basis for 4 weeks. At this time I wasn't working on the ward but as a Senior Nurse. I had a scare last year when I thought my bladder had prolapsed again but after seeing my Urogynaecologist again and having scans apparently it isn't and for some strange reason I can't feel it so I'm unsure what happened. However this improved after my GP prescribed HRT for me again (progesterone only as I've had a hysterectomy) after I'd stopped taking it last year. If you see a good Urogynaecologist and do some research as many ladies on this forum have then there's absolutely no reason why surgery won't be successful. There are some excellent Urogynaecologists in the UK who are constantly researching prolapse surgery and I am so pleased that despite being retired I am involved in urogynaecology so I keep up to date and hear about all the new procedures currently being trialled. In my area we have consultants and research nurses who are very dedicated.
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    • Posted

      Before I had my operation I use to run. Always had to wear a pad incase I leaked and also because my rectum protruded into the vagina so on occasions where the kink was it use to sometime excrete without me knowing. Doctor said I may need further surgery on my rectum , but was hopeful that the TVTO /anterior and posterior repair would help my situation. 11 days post surgery all is going well and am having BM without any problems so am optimistic.

      If I had thought that it was going to make matters worse with incontinence I would not of gone forward with op. My consultant did say because of my age (62) it was very unlikely this would improve with exercises on pelvic floor, but stressed it would be very important going forward that this would be part of my exercise programme.

      I realise it is going to be sometime before I get back to running, but at the moment I am pleased I went forward with surgery. Just being sensible and drinking loads.

      If you have a problem walking you need to get things sorted. No one wants surgery, but sometimes like me it can be beneficial. Fortunately I never had a problem with walking, but always had to wear protection. Great to think I haven't got that problem anymore. I say that with optimism, as very early days.

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    • Posted

      So encouraging Matron to hear your story. I am hoping the pain is worth the gain.

      Just trying to use my time at home in a positive way. Drinking loads is hard, as awake in the night doing trips to the loo. Still to help stop any infection it's worth it.

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    • Posted

      Hello linda. I always think of my post op pain a bit like labour pains and that is you soon forget about it!  
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    • Posted

      Yep. Feel like I have just had a baby at the moment. 😂😂  Getting there slowly. Xx
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    • Posted

      😂😂😂 That's the thing with prolapse surgery, recovery is slow but it will be worth it.
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    • Posted

      Matron,

      I would like to ask if you have any idea how often these ops can be redone?

      Phyl

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    • Posted

      Difficult to answer. Do you mean rectocele and cystocele or just one repair on it's own? A lot depends on the extent of the prolapse and the condition of the pelvic floor but urogynaecology has improved particularly over the last 15 years and since it became a separate qualification for gynaecologists that the failure rate is much lower than 20-30 years ago.
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    • Posted

      Yeah had Tvt on my bladder 4 years ago as I say and it's fantastic it was straight forward no pain .. I was in bed for the first week or so .

      - they gave me meds before the op.

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    • Posted

      Already had 3rd degree prolapse and hysterectomy and anterior repair 3 years ago. More recent prolapse gradually coming down maybe 2nd degree had anterior re- repaired and posterior repair done , now 3 weeks post op. Just a bit worried that I am going to have a lot of scat tissue that can lead to prevent cancerous conditions and worried as to how often they can keep re-pinning my insides. I am almost 56years old gone through hormone change and still hot flushing. Seems that the ligaments that hold everything in place continue to get laxer and less supportive. Other than pelvic floor exercises being done morning noon and night is their anything else that can help prevent more ops, if they can still be redone?

      Phyl xx

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    • Posted

      Hello phyllis you have definitely had a terrible time. There are a few things I can advise but need to ask are you seeing the same consultant every time? I don't know where you live but you need to see a Urogynaecologist who is at the top of his game really. There are some who specialise in failed prolapse repair. Some of the problems could be due to the menopause and very often a consultant will prescribe a progesterone pessary to help build up the vaginal wall in order to support any repair. That and HRT are worth considering. If you want further surgery send me a personal message with the area you live in, providing it's the UK and I'll make some enquiries for you x
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    • Posted

      Hi,

      Thanks for getting back, hopefully this time my repair will last much longer and will not need redone again. I was originally under a consultant called ' Dr Mathew' , but had my op cancelled 2 times and ended up having it done by Dr Perrera, this time it has been done by Dr Eileen Reilly (she is one of Dr Perrera''s team) . I am under Glasgow at the Glasgow Royal infirmary, gynaecology department. Pessaries were tried before first op but only helped for short while, prolapse still got worse. Have always been advised to avoid HRT if possible, or told will not make any difference! Just really worried about how to prevent things coming down again in future (still got 10/11 years of working life to get through) , and if the walks do prolapse again will they be able to fix them again?

      Phyllis xx

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    • Posted

      Hello phyllis. Sorry I was getting confused about your operation, I'm still trying to catch up after being away (and not to mention the jet lag). The issue of HRT is a conflicting one depending on which research you read and who you speak to. I'm a firm believer in it as are the Urogynaecologists I've worked with but understand everyone's point if view. It's helped me immensely in a number of ways. I suppose for you and the success of this surgery is to be extra cautious for a bit longer than is usually necessary. Fingers crossed for you phyllis and let me know if I can help at all. xx
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