Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: libby1 on February 29, 2016, 11:09:08 AM
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Hi girls
Has anyone had any improvement of their prolapse through pelvic floor exercises with or without electical stimulation? I'm concerned that mine is getting slightly worse and I want to do everything I can to avoid surgery :-\
Libby
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I'm afraid that they didn't improve mine at all - I think it can stop things from getting worse though. Were you given proper exercises to try by a pelvic floor specialist? If you have a prolapse it's really important that you get referred to a specialist nurse in pelvic floor management. There should be one in a hospital near you. It sometimes is shown under Continence Services. What has prolapsed if you don't mind me asking?
Taz x
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Hi Taz
I have uterine, cystocle and rectocele. I've had them for the past 10 years and I don't want them to get worse. I've made an appt with a specialist physio for advice. So any advice from anyone would be greatly received :)
Libby
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It's great that you have an appointment for specialist advice. I found the thing that really helped mine was being on HRT. When I came off it things took a rapid slide southwards and I had no choice but to have a hysterectomy and repair.
Taz x
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Did you try a kegal 8 thing? Has anyone had any improvement with them? I know Trey used to be the expert i all things prolapse :)
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I too have a prolapse, front vaginal wall/bladder & went to see a specialist nurse 3 years ago, tbh I thought it was a waste of time, I trailed into town once a month for a 10 min appointment where she told me what exercises to do next...she could've told me these over the phone & unfortunately I never did them regularly and I gave up going in the end :(. Every now and then I have a little squeeze, I too would like to avoid surgery for as long as possible :o
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I was advised against it by the pelvic floor specialist. She said that it's far better to do the exercises yourself but I can't remember her reasoning.
Goosieloosie - did she check you digitally while you "squeezed"? She should have done and you should also have been given bio-feedback where tiny electrodes are attached inside your vagina and as you perform the exercises they appear on a computer screen so that you can see how strong they are and how much duration you have. You should have been given a proper programme to follow i.e. so many long holds and so many quick squeezes - also called winks - in order to exercise both sets of muscles. These should have been increased over time. You should have seen a slow improvement over six months.
Taz x :-\
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I feel that exercises have helped me feel stronger since my repair surgery and in conjunction with vaginal HRT ie Vagifem.
My prolapses were severe and the exercises did not help me at all before I had the surgery I'm afraid and using the electrical probes actually caused me harm. I had serious undiagnosed VA and the skin was so thin and dry that the procedure broke the skin and caused infection, which took months to get rid of.
If you do use these electric probes, stop them immediately if you start to feel sore or bleed.
Good luck.
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I was advised against it by the pelvic floor specialist. She said that it's far better to do the exercises yourself but I can't remember her reasoning.
Goosieloosie - did she check you digitally while you "squeezed"? She should have done and you should also have been given bio-feedback where tiny electrodes are attached inside your vagina and as you perform the exercises they appear on a computer screen so that you can see how strong they are and how much duration you have. You should have been given a proper programme to follow i.e. so many long holds and so many quick squeezes - also called winks - in order to exercise both sets of muscles. These should have been increased over time. You should have seen a slow improvement over six months.
Taz x :-\
Oh my word Taz no she never did anything at all like that, that's why I felt it was a complete waste of my time :o She was the proper pelvic nurse at the hospital aswell, I was referred to her by the consultant when I said I didn't want surgery. I went to her for 7 or 8 months aswell and never once was examined >:(
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That's scandalous Goosieloosie!!
You should have been given a proper assessment and urodynamics http://www.guysandstthomas.nhs.uk/resources/patient-information/urology/procedures/having-a-urodynamics-test.pdf before anything else which would help show up any other problems and then been put onto a proper programme to help!
Taz x
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I have got and an electrical thingy but I never know if I'm using it properly or doing the squeezes right, hence the appt :-\
I have a feeling that it's not going to make any difference but I want to try because I'm scared of having to have surgery in the future and making things worse :(
Libby
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I can understand your worry about surgery making things worse, libby, but for me it was the best thing I ever did.
But I think it is very sensible to try everything beforehand.
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Hi Scriv
What type of surgery did you have? I guess we only hear about the bad ones :-\
Libby
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Cystocele and rectocele repair the first time in my thirties, but leaving in the uterus. The prolapses were caused by childbirth.
Then about 15 years later after a lot of heavy lifting and a very early menopause and generally life, it had all come down, helped by the uterus which was now on its way down and out. .. literally.
So I then had a vaginal hysterectomy about 12 years ago together with prolapsed bladder repair and then 2 years after that I needed a rectocele repair. Job then complete, lol.
Admittedly it was never a comfortable experience and you do have to be very careful afterwards to follow instructions. I had a few issues after surgery with healing of stitches because of vaginal atrophy, but nothing more serious than that.
I had and have no horror stories to report and I am so grateful that I had it done as my prolapses were so bad that they really affected my quality of life.
PS On the other hand, a friend of mine with similar issues with cystocele and rectocele prolapses at the same time has used a ring all this time to avoid surgery and seems to have been taking all that in her stride. Now, that is something that I just could not cope with! We are all different...
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Ah, so you didn't have the dreaded mesh stuff then?
Nice to hear that your surgery went well, thank you for sharing :)
No, I couldn't cope with a ring, seems too 'alian' to me :o
Libby
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No but I think it would have been the next resort if I had had to go back after the two surgeries lol.... my gynae at that time didn't specialise in that, so I would have to have been referred to one who did.
I am quite unsure about that as I would be afraid of reacting against it, but I don't know much about it. Is it the done thing now, does anyone know?
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I think from what I've read that there can be all sorts of problems with it but would be interested to hear more about it.
Libby
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Yes, me too in case I need it someday lol..... I guess once it is done, you are sorted for life? And the recovery period is supposedly shorter than when it is repair of your own ligaments and muscles.
Maybe someone will come along with experience of it?
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I was offered a ring while waiting for my surgery but I declined. It's often offered before surgery I believe and also if you are not strong enough to cope with surgery due to ill health or plain old-age.
My surgeon wont use mesh due to the problems. Your tissue can grow around the mesh leading to infection and pain and it's very tricky getting it removed. I wonder whether anyone on here has had mesh? These are the NICE guidelines re mesh https://www.nice.org.uk/guidance/ipg267 Haven't read it all!
My main worry is of a vaginal vault or vaginal wall prolapse now - feel sure it will happen one day!
Taz x
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The thing that worries me is that surgery seems very 'hit and miss' nobody seems to have be able to say that surgery will definitely improve symptoms. Which I find really scary. If there was a fairly high success rate it would be an easier decision to make :-\
Libby
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What are the options for you if that does happen Taz?
Libby
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libby 1 - this...http://www.oxfordgynaecology.com/TabPages/Conditions/VaginalProlapse/Post-Hysterectomy-Vault-Prolapse.htm
Taz x :( :o ???
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So mesh would have to be used if it happened?
Libby
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It seems like it. The vagina turns inside out like a sock. I did have it explained to me by the surgeon - the importance of pelvic floor exercises etc. but he also said that some women just have weak tissues and that HRT is a really good way of keeping them strong. I have read that some surgeons tend to "tether" the top of the vagina at the same time as carrying out the hysterectomy but I'm not sure how common that is. Anyway, if 40% develop it after a hysterectomy then that means that 60% don't - glass half full!
Taz x
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Yes, keep positive :)
I'll keep you all posted about how I get on with the physio today
Libby
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Have fun ;D
Taz x
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I'm not sure that 'fun' is the word I'd use :o
Libby
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Do not have mesh, there's a big wave happening to get it band and the top surgeons do not use it and do the old fashioned way of prolapse surgery , go onto a face book group called sling the mesh .
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Is there a way of finding out who the best surgeons are for a particular type of surgery? Does anyone know?
Libby
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I don't think there is another way though, Maryjane, for vaginal vault prolapse. You need something to hook it all up to the backbone - lovely thought. I agree that mesh is not the best way to treat other prolapses.
Taz x
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Well the physio was lovely and very knowledgeable. She said that I do have some strength in my pelvic floor so I don't feel a total wreck ;D And that my prolapses are Grade 1-2
I've been given a daily programme of exercises and have to go back in 3 weeks.
Libby
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Well the physio was lovely and very knowledgeable. She said that I do have some strength in my pelvic floor so I don't feel a total wreck ;D And that my prolapses are Grade 1-2
I've been given a daily programme of exercises and have to go back in 3 weeks.
Libby
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Can I ask what she did with you Libby, I mean did she examine you or do any tests on a computer? As I found out on this site that I should've had digital tests etc done to check the strength of my pelvic floor.....I never had anything like that done in the 7 to 8 months that i went monthly to see the physio >:( All she did was give me a written sheet of exercises to do & increased them each time I went, I gave up in the end, got fed up with the journey into town just to be told to do 10 more squeezes while walking downstairs >:( I even asked her to dig out my hospital notes from the birth of my kids as my last delivery ended up with a 3rd degree tear & I blame that for most of the problems I have down there but after waiting & asking for 3 months she said she couldn't get them as they didn't go back that far...my son was only 13 at the time I was at her appointment you would think he was 43 or something :o
Glad you had a nice knowledgeable lady, hope it all goes well for you :)
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Taz they do it using your own muscles/ligaments . Mesh is causing horrendous problems sometimes years later. My own local hospital have never used mesh , as they said it's a recipe for disaster and is proving so for many.
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Hi Goosie
She examined me very thoroughly and could feel how the muscles were working and how well they were working. I didn't have any electodes or computers but I felt cofident that she knew what she was talking about :)
She said that the electrical stimulators are generally used for ladies who have no strength at all in their muscles or who cannot strengthen them with exercises. So I'm going to try on my own first and then she's going to see if it has made a difference, if not we may then go on to the electrical stimulator which she will program specifically for me.
Lots of squeezes then ;D
Libby
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Taz they do it using your own muscles/ligaments . Mesh is causing horrendous problems sometimes years later. My own local hospital have never used mesh , as they said it's a recipe for disaster and is proving so for many.
That's reassuring Maryjane - I can't find anything online about vaginal vault prolapse repair which doesn't involve mesh. It's good to know that there is another way!
Taz x
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The surgeons are most definitely out there , I can't remember the names used for the different types but one is the Birch procedure but there are more. I have personally seen one of the surgeons who removes it , I don't have mesh for something else.
There are literally on a handful who can remove mesh but any old surgeon it would seem can put it in, I would never ever have mesh myself it can also cause autoimmune conditions years later.
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I did know about the Burch/Birch procedure but this seems to be for stress incontinence where the bladder needs to be supported rather than for a full vaginal vault prolapse? I agree that mesh is something that should be avoided if at all possible and the surgeon who carried out my hyster and repair doesn't use it for that type of op. Hopefully I wont need it. I'll keep doing the exercises!
Taz x
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Taz I have been chatting to a lady with a vaginal vault , she will be having it repaired in the UK without mesh....they use your own muscle or ligaments to do the job using internal stitches. She doesn't no the correct name.
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Hi Maryjane
Do you know where your friend is having it done or the name of the surgeon?
Libby
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Let us know how she gets on! The name of the surgeon would be really helpful Maryjane if you could find out. I feel I should be prepared as I'm sure it's going to happen eventually to me!
Taz x
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One of the very top surgeons for removal of mesh ( probably the top ) is Mrs Sohier Elneil London I saw her privately very quickly, the other top one is Mrs Natalia Price Oxford she is gathering her own evidence on the disasters of mesh as are many surgeons now , this includes hernias as well.
So these two surgeons do none mesh surgery, there are a more but these are the most talked about.
In Scotland I believe that 3 of the 4 types of mesh surgery have been banned. I suggest joining a face book group called sling the mesh , which is working very hard to get the dangers of this out there .
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Hi Girls
Well, I'm totally fed up :'( Been doing my kegels every day for the last 2 weeks and feel really uncomfortable and feel like I need to wee all the time :'( On the point of giving up
Any advice?
Libby
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I personally am against pelvic floor exercises and so are a lot of physios, look up PFD pelvic floor dysfunction as this is what they can cause.
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Maryjane do you mean you are against pelvic floor exercisers such as Kegel 8 or that you shouldn't do any pelvic floor exercises?
libby1 - my pelvic floor specialist nurse was totally against the Kegel 8 but I can't remember why now.
Taz x
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These are just me doing kegels on my own that's causing me discomfort :-\
Libby
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Ah, sorry, misunderstood. How many are you doing, how long do you hold each one for and do you also do short 'winks' of the pelvic floor too?
Taz x
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Hi Taz
About long and 5 winks 3-4 times a day
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Think you missed something out there... ;D
Taz x
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;D
5 held for 7 secs and 5 lots of 8 winks
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A vast majority of pelvic floors are over tight , and a vast majority of us don't no how to do pelvic floors correctly.
You should never do the if you have pain and there are only a few that should do them anyway , as you are tightening an already over tightened muscle it needs relaxing and lengthening before you can consider pelvic floor exercise , reverse keels need to be mastered first. I no to many ladies who have got PFD/ nerve damage from the kegel 8 and similar.
Unfortunately NHS physios are very behind in women's health physio , the private sector is far more knowleadable.
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Well, I see my physio privately but she also works for the NHS. She did say that my pelvic floor did not feel tight but to be honest, I'm now too frightened to do kegels at all :-\
Wish I'd been born a man sometimes!!
Libby
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A vast majority of pelvic floors are over tight
Hi Maryjane - could you say where this information has come from i.e. can you link us to any research which gives this rather alarming statement! It's a bit worrying as to what us prolapse sufferers should be doing to prevent further damage. Does it include male pelvic floors too?
Taz x
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Ok, I'm off to the gp for advice!!
Libby
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I saw a lovely female gp who said that I should continue doing my kegels if I do not want surgery if I need it in the future. I explained my needing to wee feeling which was made worse yesterday as I had a smear :'( She said that the kegels were probably moving things around down there and that was why my bladder was being irritated.
She has prescribed me solifacin which is used to treat an irritable bladder. She was also singing the praises of TVT ops and that she has many patients whose lives have been transformed!!
Who knows what to believe, I think you have to do your research and go with what you feel is right for you :-\
Libby
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Meanwhile, my bladder is b----y uncomfortable :'(
Libby
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My GP mentioned TVT op to me too, however the Scottish Government has banned them I believe. What woukd the alternative op be?
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I believe that you can have TVT using your own tissue? It's called a bladder suspension op. All is explained here.. sort of.. http://www.mayoclinic.org/diseases-conditions/urinary-incontinence/in-depth/urinary-incontinence-surgery/art-20046858
Taz x
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Hi all,
Rare post from me :) Been a member for years now and still regularly read the forum but the amount of knowledge on here has grown so much, so don't feel I have anything to contribute.
However! I have had a TVT, back in 2011 so felt I might pop in to this page just to say that not sure that a TVT mentioned by your gp would be quite the right thing for you, Libby1. The op is really to cure stress incontinence and what you seem to be describing is urge incontinence I think?
In fact in my case I took 5 years from being originally offered the op to make up my mind and my stress incontinence obviously worsened in that time. Won't bore you with all the details, but after a LOT of research I went privately and had op. And although overall I don't regret it as it definitely stopped the constant leakage I was getting, it did actually leave me with urge incontinence :( This seems to be quite a rare after effect. In my surgeon's case it happened in less than 1% of his operations but just wanted to make that point.
Hope it all eases off for you, do know how miserable it can be.
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Hi Crescent
Thanks for your post, it was really useful :)
I'm still doing my pelvic floors and going to see my physio again on Wednesday so I'm hoping it's helping. She's going to give me some core strengthening exercises to do too
Libby
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Hi Crescent
Sorry to hear you're still suffering :( I'ts so worrying that these ops seem to rarely go well, you'd think in this day and age they would have come up with a procedure that works as so many of us are suffering.
Sending you a hug.
Libby
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Thanks for Hug :)
I must say that overall I am still glad I had op as the stress incontinence had got Bad!
Hope you find your solution, Libby
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Taz2 - apologies cant find your reply which you gave some time ago - which is the forum for vaginal vault prolapse please?
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Hi Winterose - was it the Hysterectomy Associaton UK? I've found this on their site but there is a forum too https://www.hysterectomy-association.org.uk/'s=vaginal+vault
Taz x