Any Pelvic Organ Prolapse Surgery success stories?

[littlecabbage]

I have a grade II cystocoele and a grade I rectocoele (following instrumental delivery during childbirth). I am going to see my GP soon to ask for referral to a women’s healh physio to help with my symptoms, but have been told I will need surgery at some point.

It’s very easy to find negative stories about surgical repairs breaking down, and how they become more and more difficult to repair each time, but I am hoping this is just because women are more likely to post when things have gone wrong and it is on their mind more.

Has anyone had surgery to improve/resolve POP and had (so far) a good outcome? How long ago did you have the surgery? How old were you? What type/grade of prolapse(s) did you have beforehand? Did you do pelvic floor physio before and/or after, and did that help? Do you do any high impact exercise now, or is that too risky? Are your symptoms completely resolved, or just improved?

Thanks for any info you are able to share.

Hi Miamia25, sorry to hear that this seems to have happened to you too. I think it’s quite uncommon to have a prolapse unrelated to childbirth, unless you have a connective tissue disorder such as Ehlers Danlos Syndrome. It may be worth asking the doctor if this is likely to be the case for you? Hope the appointment goes well, do let us know how you get on.

Thank you for getting back to me I will definately bring that up in my visit to the Dr, I have not heard of that disorder before...I will be doing my research on it.. do you know if its life threatening or has a cure?

I don’t know much about it at all I’m afraid, have just seen it mentioned on prolapse forums before.

I seem to have stopped getting updates on this thread so didn’t realise it was still going, but just popping in to say I’m now 16 months postpartum and back to running (like many other posters I love it and the mental health benefits outweigh the prolapse risk for me at the moment).

I’ve got a grade 2 cystocele and low cervix (urogynae thinks it’s a slight uterine prolapse, specialist prolapse nurse thinks it may just be being pulled down by bulgy front wall), but neither are symptomatic anymore in terms of discomfort/heaviness/stuck tampon sensation and at my last hospital check-up they agreed my prolapse and pelvic floor strength have both continued to improve despite restarting running (wahay!).

I do 4 sets of pelvic floor exercises during the Squeezy app per day, plus electrical stimulation of my pelvic floor muscles (aka the fanny zapper, though the machine is actually called a ‘neurotrac continence’) every couple of days, estrogen pessaries twice a week to plump up vaginal tissue as I’m still breastfeeding, and use a ring pessary and evb shorts just when running.

It was 12 months of Pilates, zapping and squeezing before I went back to running, then I did couch to 5k to build up gradually and initially did all my run segments on the flat or uphill (downhill running is hard on baggy bits!). I still avoid road running where possible, but have just got back from 9 muddy hilly cross-country miles so would say don’t loose hope.

Still might need surgery at some point, and might reach a pace/distance where my pelvic floor can’t stand up to the demands I’m putting on it even with the pessary/shorts, but for now life is good.

Thanks @Verbena87, that’s a really positive update to hear. I’m so glad that things are going so well for you. I’m impressed at how much running you have been able to achieve, without your symptoms returning.

I haven’t been feeling quite so great recently. I am 6, nearly 7 months postpartum now, and feel that if anything, things worsened slightly over the Christmas period and haven’t really improved again. It’s mostly the dragging/bulging feeling that is bothering me at the moment. I don’t feel like running even a short distance after my children, and don’t like how everything feels if I bend over to pick things up off the floor.

I saw my pelvic physio last week and she said that my squeeze strength has improved a little since a few months ago, from a 2.5 to nearly a 3. I’m not sure if that can be used to equate to how much drag can be felt though? She said things may have worsened slightly over Christmas due to being tired/being on my feet more/being stressed etc.

I am currently trying to do Squeezy 4 times a day, but honestly I often only manage 3. Will try to do better. Am doing the knack every time I lift anything, or cough or sneeze. Incidently, the pelvic physio checked whether my reflex had returned for when I cough or sneeze, and said it hasn't. She wouldn’t be drawn on how likely it was to return, but I had the impression that she didn’t think it likely. Verbena, has yours returned?

I’ve been doing postnatal Pilates for a few months but it is very gentle, and I am planning to upgrade to a local Pilates class which is run by a women’s health physio. Hoping that she will be able to help me get generally stronger and fitter without causing any damage.

Interestingly, a friend who now lives in the US visited briefly over Christmas (just dropped in for a couple of hours) and told me she is booked in for surgery for a hysterectomy and to fix a mild prolapse. We didn’t get to discuss it much further as dealing with kids etc but she said her US surgeon said that she would be able to go running etc afterwards? I am planning to ring her sometime to find out more.

So I’m hoping to reach a situation like you Verbena where I can no longer feel any dragging, and can do more exercise. The physio said that I will be still healing up to 12 months pp, and also that when I stop breastfeeding, that will improve things too. So there is hope.....

Ah sorry to hear you’re struggling, that’s crap. I definitely find mine gets worse if I’m tired.

It was a year before I felt better enough to seriously try running so you’re still early days as well. I do think the estrogen helps a bit with balancing breastfeeding hormones, so it may be worth asking to try that?

And I think I noticed real improvement via the fanny zapper - they gave me it because of my nerve damage but you can buy them online (it’s basically a less-attractively-designed kegel8 machine); I did 8 weeks of using once or twice a day, then gradually cut down.

The ring pessary is also good for the odd draggy day (which I do still get if I’ve overdone lifting/running, or if I’m really sleep deprived), do you have one?

No idea if my sneeze reflex is back, nobody’s checked. I don’t wee when I sneeze if that means anything?

Hope stuff improves a bit for you soon. It’s such a bloody long road!

Also would say I still have a pronounced bulge I can feel with my fingers, and a low cervix, it’s not magically pinged back - but I don’t feel like things are falling out/down anymore in terms of the sensation in my pelvis/vagina, if that makes sense?

Thanks for the reassurance. Guess I need to just hold out till 12m pp then reassess. I might ask about the oestrogen pessaries too. Who prescribes them for you? I haven't seen a urogyn since after my first birth, so no pessary but perhaps I should ask for a referral if things don't improve. I noticed you said you see a prolapse nurse - is that instead of a pelvic physio?

The sneeze reflex thing is just where the physio can feel that my pelvic floor muscles don't contract when she asks me to cough. I don't have issues with leaking any more, it's the dragging sensation that bothers me.

I can feel the bulge (slipped tampon feeling) all the time at the mo. I wouldn't mind if it was just that I could feel it with my fingers.

Anyway, onwards and upwards. I'll try to just keep on working at it and reassess later on.

Urogynae prescribed the estrogen pessaries at the same time as fitting my ring pessary as I was still struggling a bit and he said “as you’re still feeding these might help, let’s give them a go”, but my sister had them from her GP when breastfeeding for uncomfy sex due to hormone related dryness, so GPS can prescribe them. The brand name of the ones I have is vagisil, in case that’s useful to know.

The nurse is who the urogynae referred me to when I asked about physio (I think maybe she’s cheaper for the NHS than a women’s health physio? Dunno, but she’s been really brilliant, has years of experience and also has a cystocele which she managed conservatively for 24 years and has just last year had repaired, so she gets it on a personal as well as professional level)

That's useful about the pessaries, thanks.

My pelvic physio has prolapses too so hopefully that means she is fairly on the ball about it all.

Hello

Verbena87 and littlecabbage I really hope you are still here.

I came across this thread whilst desperate googling prolapse.

I had my 3rd child 12 months ago and have had a smear since with no problems noted however it was after my 2nd child that I noticed a few small problems such as needing the loo soon after having been. But this only ever really happened occasionally so I did not think much of it. Then once when I was on the loo I thought everything seemed “lower down” I mentioned at my next smear but was told everything was fine and put it down to my menstrual cycle/life after kids.

Now I am certain there is a problem. I am still breastfeeding but last week started to have occasional spotting down below but not in the way that comes with periods. This feels different. I feel heavier down below and I feel uncomfortable but am not in pain, it’s like a tampon is falling out of me. I looked using a mirror and I can see something partially protruding (TMI sorry!) but I’m not sure what it is.

I feel very frightened and embarrassed. I have just turned 40 and lead an very active life and sex life and am really scared about what this means for me going forward.

I know I need to see a urogynaecologist but am finding it really difficult to find a recommended one as there’s such little out there in the way of direct experience and I don’t know anyone else who has gone through this.

I am training to run the Marathon. It’s been an absolute lifetime ambition of mine. I have worked hard since mid January to increase my fitness but now realise that this has probably contributed to my problem. The run is in 10 weeks time and the thought of having to drop out is making me feel utterly devastated. I have raised money for charity and feel so upset as running is the one sport I have been good at and enjoyed, at risk of sounding melodramatic the thought of not being able to run really makes me feel depressed.

I ran long yesterday and do not feel any worse down below but am very concerned about causing more damage.

I am terrified of being told I can’t do this and genuinely feel it’s effecting my mental health already.

I purchased an Elvie pelvic floor trainer today but am too worried to use in case I cause more damage. Do either of you use this or something similar? I wasn’t sure what the zapper actually was!

I realise I need to to see someone as quickly as I can so they might help me find a solution to enable me to train and run the marathon as planned without the fear that I’m currently experiencing so I’m planning to go private.

Do you think it will be possible for me to push through to participate? Perhaps using a pessary?

I know that after this I will have to make some changes but I really need some help to get through this so any recommendations you can give me would be appreciated.

Thank you for taking the time to read this.

@verbena87 & @littlecabbage - sorry clearly new! Hope I’ve tagged you now..

I'm currently 37 and I've been told that I will need a ring pessary for the rest of my life. When I asked about the possibility of ever "fixing" the problem (through surgery) as I am particularly specifically horrified by the idea of ending up as an old woman with dementia and a brittle pelvis having someone trying to pull a ring out of me to change it every six months, the consultant breezily said "oh don't worry, that won't happen" and changed the subject. I can only assume that this means that "for life" actually means "until you get old, then we don't even give you a ring anymore, you just have to keep your organs in your knickers and wee on them". Does anyone have any data one way or the other on this?

Hi Zoraboo and BestZebbie,

Sorry to hear you are both experiencing problems. My email has only just flagged up that there have been new posts here, hence the delay in replying. I have a bit of a manic day ahead today, so will write you both a fuller reply tonight/tomorrow if that is okay, but just wanted to let you know that I have seen your posts and will write more later.

Zoraboo, I think Verbena87 is probably better qualified to answer your running questions, so hopefully she will be along soon, but I’ll help if I can.

BestZebbie there are some really encouraging developments going on with stem cell research at the moment, with the likelihood that in ten years time, surgical options will be far superior to those available currently. So try not to despair! I will find a link later.

Hi Zoraboo

Just re-reading your thread, I understand/recognise the feelings of devastation at discovering you may have a prolapse. I have felt like that at times - it's a club that nobody wants to be part of.

But first things first, you need a proper assessment. Some of the things you describe are common with a prolapse such as frequent urination (due to incomplete bladder emptying) and the "slipped tampon" feeling (as though a tampon has slipped down into your lower vagina, where you can feel it).

I'm not sure what the bleeding would be related to, so hopefully your GP can advise further. And presumably you need a GP referral to see a urogyn, whether it's a private one or not?

If you are diagnosed with a prolapse, there is much that can be done to manage it. Seeing a pelvic physio is important. For most women, the advice is to manage conservatively for as long as possible, as current surgical techniques are not as perfect as we would like, and can break down in the future. But as I said above, hope is on the horizon for new treatments.

For now, download the NHS app called Squuezy, and start doing pelvic floor exercises 4 times a day, perform "the knack" to lift things or when coughing/sneezing, and limit/avoid lifting heavy things. I can't advise about running really. It is generally not advised with POP, but as with Verbena87, many feel that benefits outweigh risks, and there is advice to increase the safety of it regarding prolapse.

Re the vaginal toner (fanny zapper), my physio said they are not proven to give any further benefit over bog standard pelvic floor exercises, but I believe Verbena thinks hers has benefited her a lot because she had postnatal nerve damage (I don't have nerve damage as far as I know).

Good luck with getting assessed, let us know how you get on.

BestZebbie - here is the link with hope for the future:

hudson.org.au/latest-news/bioengineering-new-approach-treating-pelvic-organ-prolapse/

Clinical trials are now 2-4 years away (link is a year old now).

It doesn't sound to me as though you've seen a brilliant urogyn if they are just breezily brushing off your very valid concerns. Have you seen a pelvic physio yet to see what you can do to improve management of your prolapse? As I understand it, we are generally advised to try to manage prolapses conservatively until they get worse (commonly at menopause), and then have surgery. I'm hoping to be able to have stem cell therapy by this point (I'm 39).

Have you had children?

hudson.org.au/latest-news/bioengineering-new-approach-treating-pelvic-organ-prolapse/

Hopefully a clicky link.

@Zoraboo and @BestZebbie - not sure if you realise I've replied to you.

Anyone else reading this thread - I don't mind being @ed in future (I know some MNers don't like it!).

I’ve been told I have a large rectocele,large cystocele, grade 2 intussception, perianal fistula and puborectalis dysfunction. Initially was referred to colorectal because of abdominal and rectal pain which was excruciating but not constant a year ago. It now gotten to the stage that everyday I’m in pain often feeling like someone has shoved a red hot poker up my bottom.the surgeon I was referred to has told me it’s not his area of expertise so referred me to another colorectal surgeon who did my syphncter repair following total tear in childbirth 12 years ago. Unfortunately both cystocele and rectocele are protruding now and I can’t help thinking i should be referred to a gynaecologist. I’m so depressed about it. I’ve always done my pelvic floor exercises but not really helped. I have to wear incontinent pads and I’m 38. I don’t think I have any option but surgery but would appreciate any support or advise you could offer as feel very alone in this. Tia

Hi Lindy1380

Goodness, I really feel for you. That's quite a collection of symptoms you have, and it doesn't sound as though you're getting the right help

How long ago did you see the colorectal surgeon who did the sphincter repair? What advice have you been given re the prolapses? I am NOT a human medical expert but just from what I have read around the subject, I suspect that you do need surgery.

Usually, women who post on MN seem to be referred to a urogynaecologist. I would insist on being referred to one as soon as possible, and if your GP won't agree, try a different GP. You should not have to put up with this.

It may also be worth seeing a pelvic (aka "women's health" physio to check you are performing your PFEs correctly and for other practical advice. There are private ones if paying is an option for you, and if your GP won't refer you (or there is a long waiting list). I guess seeing a urogyn privately (via GP referral) may also speed things up for you.

Are you familiar with the APOPS facebook page? Supportive group with posters from all over the world, who are affected by pelvic organ prolapse. You may find it useful:

m.facebook.com/profile.php?id=184143085606&ref=content_filter

I'm so glad I found this thread, ive got a grade 4 rectolce. I'm only 25 and it's agony, embarassing and massively affecting me. A nurse specialist couldn't fit me for a pessary because it's rectolce and the gp told her it was my bladder. She's highly suggesting I get the surgery because I'm so young and shouldn't have to live with a pessary for years. I agree with her, I've had children and can't bare to live like this any longer.

Sorry to hear that multiplemum3. How do you find it affects your every day life? Have you asked for referral to a surgeon yet?

I'm 13 weeks post surgery for cystocele and rectocele (stage 2 for both). Best thing I ever did. Please, if your GP is suggesting surgery, do not be afraid to at least take up the gynae referral to see what he/she says. I had 6 weeks off work and my husband arranged to work from home for the first 3 weeks so I didn't have to drive on the school run then. I also trained the children to lift the laundry and hoover :-)

I'm now having physio to strengthen pelvic floor properly and had the Mirena coil fitted to deal with very heavy periods - I'm 46 and in perimenopause.

I'm back at the gym and doing more activity than I've been able to do in the 8 years since I had my 3rd child as the surgery was a success. I don't have any stress incontinence, although the physio did give me a good bladder emptying trick that really helps! I'm sleeping through the night for the first time in YEARS!

Bladder emptying trick for prolapses: a prolapsed bladder is shaped like a beanie hat, so there's always a bit of wee left in the end of the hat bit (wish I could draw, might make more sense!) Wee as normal, then when you think you're finished, stand up and bend forward, then shake your hips from side to side to encourage any leftovers to go towards your urethra (the tube you wee out of), then sit down and more should come out. It works!

It affects my sex life, loss of feeling and pure embarrassment, I struggle to run after my toddlers, I work in a hospital and all the walking leaves me in pain. The whole things making me depressed. I'm seeing a gynae consultant on Friday but I feel as I'm young they may not listen to me and I could have to insist on the surgery.