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Any Pelvic Organ Prolapse Surgery success stories?

(316 Posts)
littlecabbage Fri 10-Aug-18 21:21:00

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.

Scientistic Fri 10-Aug-18 21:37:57

I have one but no-one ever said what grade so I'm not sure. They didn't say it need surgery at any point but I do worry that I will. I had physio for pelvic floor. It did help and I do try my best to keep it up. I also do exercise I'm not supposed to but I figure my overall health is also extremely important.

It sucks doesn't it. I think a lot more people have them than you realise but it's not spoken about publicly very often. For me it's the humiliation angle that worries me the most and I was worried about dh thinking everything was ruined!? But he's a good guy and couldn't care less!

You can get pelvic floor exercisers now with apps. I can't remember the name of the biggest one - eevie maybe? Also nhs so a squeezy app wkth is helpful.

TightropeWalk Fri 10-Aug-18 21:40:54

I have a grade 3/4 cystocele and have managed it for 13 years to avoid surgery as long as possible (I have also had unexpected children in that time.) it’s as good as it can get without surgery. Still not pleasant but manageable. Both my mum and sister had repair surgery (mum at 45, sister at 27) both repairs lasted between. 8-10 years. My mum had hers redone 2 years ago and the scarring was so bad they were unable to do the planned operation and she has been left with worse issues and advised further surgery which she is adamant she doesn’t want. My sister is now 39 and struggling to find the time off work to have her repair redone.
It’s completely put me off, despite the unpleasantness of having a prolapse. It just seems like a luck based out come. And even my gynaecologist has said the older the better as the repair won’t last forever.

Lwg87 Fri 10-Aug-18 21:43:11

I have a rectocele too and am still to scared to go down surgery route! Following!

littlecabbage Fri 10-Aug-18 22:50:19

Hmmm, so no success stories so far....

(But thanks for posting your stories so far).

littlecabbage Sat 11-Aug-18 13:17:01

Err, bump?

itsbritneybeyatch Sat 11-Aug-18 13:44:51

I had a really bad uterine prolapse and had it repaired two yrs ago (with mesh). Massive improvements but it’s not perfect (I still feel the bulge once every month for about 5 days and it has limited my lifestyle ( I used to run regularly and now I can’t). Glad I had it done though.

Airbiscuits Sat 11-Aug-18 13:57:26

I had rectocele repair 5 years ago. It hurt like hell afterwards, but has been brilliant. I can run again (couldn't with it as it felt like I needed to go, even if I'd just been - was horrible) and poo normally, and no issues at all so far. I am 45.

I also have a cystocele but elected not to have it done as the doc was sceptical it would help much (I don't have bad issues there) and a sling can increase risk of incontinence, he said.

Same as you, damage caused by instrumental birth. What makes me mad is that I had to get it all done privately. My GP was just all "oh yeah, that happens" and didn't even think worth bothering to do anything about until I pushed for it, even though my insurance covered it.

BeyondRadicalisationPortal Sat 11-Aug-18 14:11:04

I had grade 2/3 rectocele and grade 1 cystocele, I have EDS and I'm in my early thirties.

I had transvaginal repair (no mesh) of the rectocele in November 2016, they decided to leave the cystocele until it is worse, and using non-mesh meant the possibility of mesh repairs remained available for the future (I know there have been many problems with mesh repairs, however I have had one with no problems for an inguinal hernia so I'm remaining optimistic if it needs doing in future!). There were problems immediately after surgery - I developed an infection (should really have been on prophylactic ABs as I'm immunosuppressed...) and my stitches ripped - but since then the improvement is immense. It is still not perfect (possibly cause they decided not to restitch the rip...) but I'd definitely say getting it done was positive overall smile

Branleuse Sat 11-Aug-18 14:19:49

im really interested in this. Apparently im prolapsed front and back. I seem to manage it ok if I keep my weight down. Weights crept back up a bit lately and i can feel it all feeling worse down there again.
Surgery was suggested to me a few years back but I bottled out. Im now thinking I need to go back to the doctors as I dread getting coughs or colds as I become incontinent, and also in the run up to my period its worse. I would love to hear some success stories, as the whole thing terrifies me, but If im like this in my early 40s, I dread to think what ill be like in my 60s and 70s

GoatWoman Sat 11-Aug-18 14:28:55

This has happened to me and I'm only 44!
My appointment with the Gynae isn't until October so I'll know what my options are then. The worst thing for me is not being able to exercise properly, its so depressing.

Has anyone tried a pessary?

Also, do we know if this is a problem with women who've had ELCS? There's no way I'd have had 'natural' (bollocks to that) delivery.

I'm so fucking angry and I'm questioning all my feminist principles. As in my body is interior to a mans. I feel disposable and like what was the fucking point? No wonder men are laughing at us. It's just all so shit sad

GoatWoman Sat 11-Aug-18 14:30:16

Sorry for the typos and being so depressing.

BeyondRadicalisationPortal Sat 11-Aug-18 14:37:24

Goat, apparently it is the weight of pregnancy that causes the main problems, the delivery is just an additional risk. I was diagnosed while pregnant with dc2 and told by the consultant that if the damage was already done, a second vaginal delivery would have negligible difference to an ELCS.

BeyondRadicalisationPortal Sat 11-Aug-18 14:40:08

Another thing that may be important, obviously there's an effect on exercise so it could be causing weight gain rather than caused by it, but I was worried going into surgery as I was classed obese: The nurse laughed and said I was definitely on the skinnier end of their usual patients...!

Branleuse Sat 11-Aug-18 14:42:33

thats interesting. I have gained quite a bit of weight in all my pregnancies, and then lost it again (my first pregnancy i went from a size 10 to a size 20+ - no idea how much I weighed as I was scared to look) I just ballooned. With myothers it was less, but it was still probably around 4 or 5 stone.

INeedAnAero Sat 11-Aug-18 14:42:52

I'm 8 weeks post repair.

My wonderful surgeon stitched through my ureter causing my kidney to dilate. Was left in utter agony then had to have an emergency surgery to have the suture removed then a stent put in my ureter for 5 weeks. Pissing blood for 5 weeks and constant pain on top of recovery from repair.

Hell.

Don't do it unless you absolutely have no other options.

GoatWoman Sat 11-Aug-18 14:47:20

Ok thanks everyone. I'm going to hopefully try the pessary thing.

CornishFairing Sat 11-Aug-18 14:54:25

Following - I went to the gp yesterday about my rectocele. Had a very long labour and back to back delivery with some grade 2/3 tears. Gp examined and said she will refer me for surgery after dc2 (I told her I'm currently trying to conceive).

I'm in 2 minds about surgery and will have to see what the damage is after dc2 (if lucky enough to have dc2)! I may post phone for as late in life as possible , or it might get a lot worse and need repairing ASAP....

Sorry not much help.... I created a long thread about pop recently and there are some success stories there , will link

CornishFairing Sat 11-Aug-18 14:56:01

Is called a cone pessary apparently. But my go did advise that an area of distinct sagging may not be helped much by PFE.

If wanting to do PFE anyway there is a good app called Squeeze

BeyondRadicalisationPortal Sat 11-Aug-18 15:56:08

Another memory popped into my head... relevant to any other EDsers only really... the gynae commented that my pelvic floor itself was ridiculously strong, it was just that the connective tissue surrounding it was buggered. No amount of PF exercise would have helped me.

SchrodingersMeowth Sat 11-Aug-18 16:00:32

I have an external mucosal prolapse that causes bleeds,, intususseption, rectocele, cystocele, enterocele, kink in my urethra, falling bladder/uterus and something up with my cervix (they keep commenting that it’s “huge/massive”. sad blush

27 with a connective tissue disorder that makes surgery difficult but need it so I’m watching with interest sad

SchrodingersMeowth Sat 11-Aug-18 16:00:52

Oh I see there’s other EDSers here already!!

SchrodingersMeowth Sat 11-Aug-18 16:01:51

And also have a ridiculously strong pelvic floor lol.

Also forgot about the neurogenic bladder, currently have suprapubic catheter.

itsbritneybeyatch Sat 11-Aug-18 16:44:17

I’m not exactly sure what issues a colleague had with her prolapse but I know that she had a laser treatment (privately) and she said she felt like a new woman afterwards.

OhBergine Sat 11-Aug-18 17:03:26

Gosh there aren't many positive stories are there?! confused

I'm on the waiting list for surgery. I'm 30 and have a bladder & bowel prolapse after having 2 babies almost back-to-back (apparently it was the pregnancies and not the deliveries which caused the damage). Im not incontinent (hurrah) but it is uncomfortable enough to prevent me from exercising as I used to. Am a size 8 too so not weight related, just unlucky sad.

I'm still going to go ahead as my mother had hers repaired (with a "tape" (TVT)) about 15 years ago and she says it was the best thing she ever did. She was comfortable days afterwards and has had zero problems. Hoping it will be the same for me.

Branleuse Sat 11-Aug-18 17:35:02

BeyondRadical - do you mean ehler danls?

tleaf Sat 11-Aug-18 18:21:08

Some time ago I read a thread about prolapse problems of all types. An electronic pelvic excerciser was recommended, the Kegel 8 and has since helped my condition and will hopefully avoid surgery.

TightropeWalk Sat 11-Aug-18 18:59:01

It’s absolute nonsense that subsequent deliveries do not worsen prolapse, and it angers me they say it’s the pregnancy not the deliveries 🙄 do they think we are morons that do not know our bodies? I argued this out with my obstetrician this time, and she agreed that of course every delivery could worsen the prolapse, the reason they prefer to avoid surgery is a) you are likely to have your prolapse repaired whether it’s grade 2 or worsens to grade 3 with a further delivery, and b) there’s a small risk of scar tissues or needing a repair through the front rather than vaginally and therefore ideally you want as little surgery as possible.
I fully researched my options. Luckily my last baby 2 weeks ago has not made the problem worse, but my delivery before that absolutely made things so much worse. It was horrific. And no it was not the pregnancy as I’m well aware exactly how it looked prior to the delivery... and exactly the function I had also...
I was offered a section in the end, due to the prolapse. But I instead chose to risk the prolapse as surgery is major.

BalloonSlayer Sat 11-Aug-18 19:15:13

The weight of pregnancy that causes the problems, not the delivery?

Oh really?

So putting on a stone and a half round the tummy (which lots of men do) causes untold trouble but heaving a 7lb lump through a tiny hole and being ripped from armpit to arsehole doesn't?

Branleuse Sat 11-Aug-18 19:19:53

i dont think putting on fat can compare to an actual baby displacing and pushing down on your pelvic floor from the inside, plus mens pelvises are smaller and the myscles dont take all the weight

Xmasbaby11 Sat 11-Aug-18 19:25:06

I've had 2 prolapse repair operations with key hole surgery, front and back uterus. It has made a huge difference as my uterus no longer pops out often. It does pop out occasionally but nowhere near as often.

I can no longer do strenuous exercise or lift anything heavy or it will weaken the repair.

No regrets!

I'm 42 now.

edwinbear Sat 11-Aug-18 19:26:15

An instrumental delivery with DC1 left me with a ‘moderate’ anterior and posterior prolapse in 2009. I was advised to wait until our family was complete before having it repaired so I struggled with it (a Kegal 8 helped a lot mind). DC2 was born in 2011, a very straightforward delivery, the prolapse caused no issues during delivery.

I had a repair at the start of 2013 (age 37) which required 7 weeks off work. My surgeon (thankfully) refuses to use mesh as he didn’t feel there was sufficient research into the long term effects. I’ve had no further issues at all, symptoms completely disappeared, however he told me no weight training and no running for life, which I have observed.

littlecabbage Sat 11-Aug-18 21:29:54

Thanks everyone for responding to this. I’m so sorry that you are going through this also. I can’t believe this issue is so common and yet talked about so little in real life. I really think we need to talk about it more to raise awareness and encourage new research into how to prevent/treat it.

I’m only 38 but was diagnosed with POP at the age of 31 following the birth of my first DC. I had to be induced, which led to such a sudden and intense labour that I couldn’t cope with the pain. So had epidural and ended up on my back in bed. This slowed labour and there were what seemed like hours of the midwife telling me to push whenever she could see a contraction, and me pushing as hard as I could. Then it ended up with an episiotomy and forceps delivery.

I believe the combination of crap position for delivery, being told to push hard for ages when my body was not necessarily past the transition stage, and the instrumental delivery caused my prolapse. I have had 3 more vaginal births since and don’t think births 2 and 3 worsened things at all. I feel slightly worse after this last birth, maybe as baby came out with arm up by head, but am hoping that I will go back to “normal” as I heal (only 6w post partum) and my hormones settle down. By “normal”, I mean how I was after healing following first birth, as can cope with that level of symptoms.

I’m glad there are now some positive stories on this thread

TightropeWalk that is depressing re your Mum and sister. Has a genetic weakness been looked into as a possibility?

GoatWoman I feel angry too. Not so much with vaginal deliveries in general, but with the way my first birth was handled. And I agree, it’s crap being limited with exercise. I’m thinking that it now has to be Pilates/Swimming/Cross Training type stuff? Some of you are saying they are back to runnng but I don’t think I dare risk that knowing what I know. The lady who did the recent POP webchat advises against it.

INeedAnAero flowers that sounds horrific. Sorry that you have been through that. I gather the outcome of this type of surgery is very surgeon-dependant, but have no idea how you research which are the best ones beforehand?

CornishFairing I tried to find the thread you mentioned, but couldn’t. I know what you mean about being in two minds about surgery. I really want to be “fixed” and feel normal down there, but don’t want the surgery failing and being in a worse position.

itsbritneybeyatch I’ve tried googling that laser treatment but there isn’t much info. Don’t know if that is because it isn’t generally considered effective for POP, or whether it’s just early days.

OhBergine Hooray for your mother’s story! Hope it works out just as well for you.

tleaf I’ve just bought a Kegel8 but have yet to start using it. Glad to hear a positive report of it.

Xmasbaby11 and edwinbear thanks for your positive stories. I understand that no heavy weights and no running are important, and I wonder if continuing PFEs and using an electronic toner would improve long term prognosis. Have you been advised about this?

BlackWatchBelle Sat 11-Aug-18 21:49:56

I had a stage 3 uterine prolapse a year after my son was born, a year after that I had a daughter and when she was 2 (over 4 years ago) I had a hysteropexy (mesh sling on the uterus) at John Radcliffe in Oxford. The surgery went brilliantly and I have had no issues since. The surgeon advised I had stage 1 bowel and bladder prolapse but the hysteropexy hitched them up.

I do not regret it for 1 second. Before I was in pain all the time, I had no relief and couldn't play with my kids properly. I don't know what the future holds but for now its all great.

edwinbear Sat 11-Aug-18 22:03:18

I fully intended to continue with PFE as recommended by my surgeon - I haven’t blush. This thread reminds me they are important, thank you. I’ve not used the Kegal 8 since either, I’ve just not had a need to, but it probably would be sensible.

In terms of exercise, I swim a lot, I also do spin classes, I’ve not done any Pilates as I don’t know enough about it. Sit ups, or anything which involves any degree of bearing down are out and I’d worry a bit about engaging the wrong muscles and pushing things back out.

The cross trainers in the gym are fine, as are the vibrating plate things, and the rowers, but mainly, I’m a swimmer - oh I also have my own scooter for when the DC are on theirs, that’s fine too grin. It took a bit of adjustment as I enjoyed weights but it’s a small price.

littlecabbage Sat 11-Aug-18 22:04:01

BlackWatchBelle thank you, that is good to hear and I hope your repair lasts indefinitely. Were you advised to continue any kind of pelvic physio? And not to run?

littlecabbage Sat 11-Aug-18 22:19:33

edwinbear I can see how it would be easy to lapse out of PFEs once symptoms resolved, but interesting to hear that your surgeon recommended them.

In terms of pilates, I've read on other threads about special Pilates classes run by pelvic physios, who modify anything not "pelvic floor friendly". I fancy trying that if I can find one.

BlackWatchBelle Sat 11-Aug-18 22:33:46

I was advised not to lift heavy weights and nothing else. All things moderately.

I did have a plan of pelvic floor exercises but to my shame I let it slip big time. I did invest in a Kegal 8 though and have stuck with it for about a year and the minor urine leakages I did suffer from have stopped.

Verbena87 Sat 11-Aug-18 23:53:49

goat I’ve got a pessary fitting coming up for stage 2 cystocele and slight uterine prolapse To use for exercise (am managing symptoms day-to-day with PFEs and electric stimulation with w kegel 8 type machine, so could be worth investigating?) - I’ll try and remember to come and report back here.

And yep, it’s shit. brewflowers

Verbena87 Sat 11-Aug-18 23:56:39

I also do exercise I'm not supposed to but I figure my overall health is also extremely important

@scientistic do you run? Prior to prolapse I used running to manage mental health issues and am dying to get back to it. Any tips for managing ‘inappropriate’ exercise with prolapse?

ccmms Sun 12-Aug-18 00:00:41

watching this thread with interest. Im on the waiting list for surgery for bladder prolapse, so hopefully get operated on within next 3/4 months.

SwimmingKaren Sun 12-Aug-18 00:01:55

Really stupid question here and apologies for the detail but how do you know if you have a prolapse? I’m not at the point of incontinence but have sometimes worried things don’t feel quite right etc post dc.

littlecabbage Sun 12-Aug-18 00:24:28

Hi SwimmingKaren, I've copied and pasted this from a Mumsnet webchat with Sherrie Palm, founder of Pelvic Organ Prolapse Support Organisation (APOPS):

The most pronounced symptoms of pelvic organ prolapse (POP) in no particular order are: tissues bulging from the vagina (might feel like you are sitting on a ball), urinary incontinence, urine retention (gotta go, can’t pee, more common in advanced stages of POP), chronic constipation, fecal incontinence, pain with intercourse, lack of sexual sensation, rectal, vaginal, back, or pelvic pain (or any combo of them), rectal or vaginal pressure, and your tampons will push out.

For me, the main symptom is a bulge in my vagina and a feeling that things are lower than they ought to be.

littlecabbage Sun 12-Aug-18 00:25:27

Not a stupid question at all!

cravingcake Sun 12-Aug-18 03:29:36

I have a (so far anyway) positive story.

I was diagnosed with prolapse after my DS was born (forceps, episiotomy, 4th degree tear, shoulder dystocia). I then went on to have my DD just over 2years later, pregnancy with her made it worse, she was born by ELCS.

I had cystocele and rectocele surgery when DD was 10 months old. I don’t know what grade but my gynae told me it was very bad and the sort of thing he would see in his 70yo Ladies, not someone early 30’s. He also said no amount of pelvic floor exercises would fix it and surgery was my option. I was also told first fix is their best chance to sort it, subsequent surgeries can be more painful due to scar tissue. I also had to be prepared for them to perform a hysterectomy if my womb has prolapsed (it hadn’t thankfully). I did not and will never have mesh.

I’m now almost 5 years since surgery, I can still lift & carry my children although try not to. I have also recently taken up running to improve my overall health but I need to be careful - gentle jogging around the block and not training for a marathon.

Recovery was hard and I had to be very strict about lifting, things like online shopping so not having to lift heavy bags was suggested.

So nearly 7 years from first diagnosis and almost 5 years since surgery and I only have a tiny prolapse - I noticed this about a year or so after surrery so put it down to my body just resettling. It is very high up so doesn’t bother me.

littlecabbage Sun 12-Aug-18 05:47:18

Thanks cravingcake, that's the kind of story we like!

Caribbeanyesplease Sun 12-Aug-18 06:02:24

*I can no longer do strenuous exercise or lift anything heavy or it will weaken the repair. *

For 12 weeks afterwards, yes.

After 12 weeks the vast majority can resume full exercise / life routine, including weight lifting, running etc.

ALL are able to after 6 months.

If you are not able to exercise or lift anything heavy for life - then you have been given the wrong information or your operation was not a success.

Caribbeanyesplease Sun 12-Aug-18 06:03:34

The pessary is the choice for women 60 plus.

smellsofelderberries Sun 12-Aug-18 06:08:11

No surgery but might have one day. I have a small bladder prolapse (possible bowel too) but also have levator avulsion. My pelvic floor muscles were torn off my pubic bone during my daughter's delivery. There are wonderful things happening in research right now and in 5-10 years there will be much more options for us than there currently are, including (hopefully) using stem cells to replace mesh. If you had forceps there is a chance you could have an avulsion too, but I've heard in the U.K. it's hard to find a urogynacologist to diagnose. A good women's health physio should be able to tell if you have one through an internal examination.
I use a pessary and it's pretty great. I don't have symptoms for about 90% of the months and I'm really hoping with the pessary use and doing lots of physio I can avoid surgery for the next several years.
And to anyone who suspects they have issues, you need a urogynacologist, NOT a regular gynaecologist. Gynaecologists aren't trained to assess the pelvic floor.

smellsofelderberries Sun 12-Aug-18 06:12:13

@Caribbeanyesplease wrong wrong wrong. Only a women's urogynacologist and physio can tell them of their own personal restrictions post-surgery. For a lot of women, their prolapse will be due to muscle avulsion and therefore they will be at significant risk of surgery failing (bladder repairs have an 80% failure rate if the initial cause of the prolapse is because of avulsion).

And pessaries are for anyone who wants to avoid surgery, and in a lot of cases of newly post-partum woman can aid in prolapse grade reduction or even a mild prolapse resolving completely.

Caribbeanyesplease Sun 12-Aug-18 06:14:38

smellsofelderberries

My consultant - mr Hackett

This is literally word for word from him. I took notes.

None of us are consultant gynaecologists. OP, your best bet is to talk to your consultant

Caribbeanyesplease Sun 12-Aug-18 06:18:57

42 and can no longer do strenuous exercise or lift anything heavy

That’s surely not much better than pre surgery and far far too young to be accepting that kind of quality of life

Scientistic Sun 12-Aug-18 07:31:49

@verbena87 Yes, I do. I was advised it might not be the best idea but the physio said if the benefits outweigh the possible cost then the decision is mine to make. I have been thinking about a pessary for when running but I don't feel heavy or affected at the moment. I am not a huge runner though.

I know some people who run with worse and just put up with it as they enjoy it. I took the stance that I would rather be healthy and stave off any other illness (hopefully) and deal with the prolapse later down the line, if needed, when I'm hopefully older and likely was going to have to deal with it anyway.

Tip wise though, It is better to avoid hard surface and downhill running, and to run with a certain technique where your feet don't leave the floor too much ie less impact. Also do the other things that go hand in hand ie core exercises, pelvic floor, and not sitting on the toilet ages when you've already been and need 5 mins break from the kids grin. Plus no straining, lots of water and fibre etc.

Best of luck with it. I googled away to find the advice above in more detail , I'll try to find the links!

Scientistic Sun 12-Aug-18 07:37:55

www.pelvicexercises.com.au/prolapse-and-running/

smellsofelderberries Sun 12-Aug-18 10:14:12

@Caribbeanyesplease great. Your Mr Hackett is A. Not specialised in any sort of pelvic reconstruction whatsoever, and B. A bog-standard OBGYN to boot. OBGYNs deal with women's reproductive health, they have very little training in the actual structure of the muscles and ligaments of the pelvis and no business giving information on exercise restrictions post prolapse repair surgery.

Mr specialist is Prof Peter Dietz, one of the most recognised urogynacologists in the world. He would say a women should work with her physio to get back to the level of exercise she would like to achieve.

You would never tell an individual who's had any other type of reconstructive surgery that they can just do whatever exercise 6 months post surgery. A woman can be guided back to exercise post-surgery by a specialist women's health physio. Pelvic floor exercises are not enough.

The information your consultant gave you (and you have passed on here) is dangerous.

smellsofelderberries Sun 12-Aug-18 10:15:59

@Caribbeanyesplease sorry for the argumentative tone of my post but there is SO MUCH misinformation surrounding prolapse and womens' pelvic health. Unfortunately consultants like yours are far too common.

Caribbeanyesplease Sun 12-Aug-18 11:37:20

Guess we just agree to disagree! grin

smellsofelderberries Sun 12-Aug-18 11:47:58

Sure, if you like listening to and following bad medical advice 🤷🏻‍♀️

To anyone else reading @Caribbeanyesplease 's posts, please ignore all advice she's given.

Airbiscuits Sun 12-Aug-18 12:15:55

My consultant knew full well I ran and wanted to continue, and never told me to stop. Just to keep my weight down to lessen chances of failure. I'm not a major runner anyway: about 20 miles a week, slow pace.

Told me not to do weight training, or lift anything heavy (over 25kgs) ever again. Which included the children sadly.

I also have an abdominal hernia repair (with mesh) which is nothing to do with the POP but same rules apply.

Caribbeanyesplease Sun 12-Aug-18 12:18:00

Gosh, I’ve been told (and Mr Hackett)!! wink

itsbritneybeyatch Sun 12-Aug-18 12:46:15

I think this is such an emotive topic as women feel cheated that they weren’t fully informed - or even educated at a younger age. I have seen a LOT of consultants over the last 15 years about my issues (I’m not in the UK) and have had mixed signals about how much exercise is ‘safe’. I have to be honest- the ‘arrogant’ ones have been the ones saying that you can carry on as you like - run/jump/lift etc but the ones who have taken more time to listen and chat with me are the ones who have said no to these types of things. I’m not saying I’m right but I felt it was an interesting observation and I do get why ladies feel so strongly about mixed signals. The Facebook group that has been mentioned (APOPs) has been a fantastic page to refer to when I have had questions - and I’ve had many!

Holycrappamoly Sun 12-Aug-18 12:47:18

42 and can no longer do strenuous exercise or lift anything heavy

That’s surely not much better than pre surgery and far far too young to be accepting that kind of quality of life

This sounds like me tbh, only I am much better off than before my surgery, because my uterus was hanging out which wasn't good! (Plus periods from hell, so the whole lot was removed with muscle repair). I've recently just had quite a scare in the "overdoing it" dept and so relieved I haven't - all symptoms of prolapse/surgery breakdown experienced, but temporary thank goodness. But my warning signs are there - do too much of the wrong kinds of things (heavy lifting in my case, and running/jumping just does not feel right, even a few steps) and it causes discomfort (bulging) and painful sex for a few weeks. I can only imagine that if I had pushed myself even further than I did - doing things I used to be able to do pre-DC, I would be back in hospital.

We're basically talking muscle repair here, not just organ damage/removal - the extent/nature of each repair is going to be very individual. So I second the notion that not all pelvic organ surgery will discount every type of strenuous exercise forever more, but certainly in some cases I can fully believe it can, and the more specialist info you can get regarding your own case, the better.

Thanks littlecabbage - saw your link on the other thread - good idea to post here for traffic, so no, YANBU!

smellsofelderberries Sun 12-Aug-18 15:02:04

@Caribbeanyesplease I'm glad you find this so amusing, considering the distress initial prolapse diagnosis causes, and the distress which surgery failure is highly likely to cause 🤷🏻‍♀️

I personally think women's pelvic health should be pulled kicking and screaming out of the dark ages, and women be given the latest information about how to support their pelvic health (and health in general). The advice you were given is wrong. That is a fact. How about acknowledging that and not continue spreading misinformation that contributes to further damaging women's health? The help for women's pelvic health issues is archaic and until attitudes like this change we will never be offered the healthcare we so rightly deserve. If I seem angry it's because I bloody well think for too long woman have been told this is a natural consequence of childbirth, and women should put up and shut up. I won't, and neither should you, and people like your specialist have no business giving the information he did when his specialism does not lie in the area of urogynacology. We deserve more than that.

NOT all women will be able to continue to run/lift/exercise as desired post-surgery.
If women should so desire, a pessary can be an excellent way of helping a women support her prolapse/s, no matter her age. It's a personal choice and consultants should suggest a pessary as a option (alongside PT) which is equally as viable to surgery.

Sorry to derail the thread OP. My specialist is absolutely amazing, and fighting tooth and nail to come up with low risk, long lasting surgical options for prolapse repairs. He is an amazing man who keeps his knowledge to up to date, works with women's physios, and is fighting for women's health.

I hope whatever decision you make regarding surgery is one you are comfortable (and should you go ahead) successful with. Please exhaust your non-surgical options such as a pessary and women's health physio first.

Caribbeanyesplease Sun 12-Aug-18 15:05:45

Why would I acknowledge my consultant is wrong when I don’t think he is.

You seem profoundly worked up and very defensive. That’s not going to be good for your health. I wish you all the best. I’ll lewve the thread now so you can co tike to be as dogmatic as you have demonstrated yourself to be

Verbena87 Sun 12-Aug-18 20:17:46

@scientistic thanks, that’s good to hear (and yep, I’ve read the Michelle kenway stuff too!)

Scientistic Sun 12-Aug-18 21:42:56

No probs @verbena87. I found better advice than that before but can't track it down now.

Verbena87 Sun 12-Aug-18 22:10:59

No worries @scientistic - I think a lot of it boils down to ‘listen to your body’ really and I’ve got good support from specialist nurse and gynae, but it’s nice to hear from other women about their actual lives experience too.

littlecabbage Sun 12-Aug-18 22:33:01

@ccmms Please keep us posted how you get on with your surgery (if you are happy to that is).

@smellsofelderberries Thanks for all the info. That is really interesting about levator ani avulsion. I am wondering if I have that. I have googled your Prof Dietz and read about his work in this area, and am quite envious he is your consultant. He sounds really dedicated to improving this awful issue, and I hope to find someone similar in the UK (if they exist!). Is it through him that you know about the encouraging research?

Like you, I hope to be able to manage my prolapses until outcomes have improved. My plan for now is: PFEs and start Kegel8 until get referral to pelvic physio. Consider pessary if recommended. Avoid heavy lifting and running. Hopefully have surgery in 5-10 years time when techniques have improved, and recovery will be simpler (as children older).

That is interesting that you quote 80% failure rate for bladder prolapse surgery if levator ani avulsion present. I assume there isn’t currently a decent method of restoring this muscle?

itsbritneybeyatch I agree with your theory on the attitude of medical staff. If they can’t be bothered to listen properly, then they can’t be bothered to effectively research factors related to poor outcomes.

The consultant who assessed me back in 2011 and diagnosed cystocoele and rectocoele, did so with me lying down, which I now know is not ideal. He was also dismissive of some of the symptoms I explained (e.g. that I had wider stools and a wider urine stream since giving birth - the young female medical student with him also commented how it was just something that happened after giving birth, like it is normal). He told me I would need surgery after completing my family but gave no information as to outcomes, did not suggest referral to a pelvic physio and did not advise me not to run of lift heavy items. Mind you, he worked at the same hospital that I feel mishandled my first birth (confirmed by the head midwife there a few years later, when I returned to the birth afterthoughts service).

I have since moved house and live near a specialist women’s hospital, so hope I will get better care.

I see you have found the APOPS FB group helpful. I went on it briefly recently and found it rather scary/depressing, but I guess it is skewed because the success stories get on with their lives and forget about the support groups!

@Holycrappamoly Thanks! grin I knew it wasn’t unreasonable to bring up such an important topic, and hoped to hear more success stories in AIBU, as again, they tend not to hang around boards specifically for those still suffering.

Starlings27 Wed 15-Aug-18 19:08:57

I had a grade 2 rectocele after a forceps delivery. I didn't have any symptoms as such from the rectocele but I was having trouble with my stitches so was referred to a consultant gynocologist who identified the rectocele too. I had surgery to repair both issues about 6 months after DS was born. The surgery went well - it was painful afterwards and I wasn't allowed to drive or lift things for 6 weeks afterwards. I would have been signed off but I was still on maternity leave - what was difficult was that I couldn't lift my son during that time but family helped out. I wasn't supposed to vacuum either during those 6 weeks and in fact I've extended that to a permanent ban on hoovering! The surgery fixed the stitches issue straight away (I'd been having pain and tightness during sex and that got better pretty much immediately after I'd healed. But I had nerve pain from the rectocele repair during sex for roughly 3 years. Luckily I have a very patient and understanding DP.

grabbinglife1123 Wed 15-Aug-18 19:28:48

I am 26 and have a bladder prolapse and possibly bowel since forceps delivery this year. My main issues are incontinence when sneezing or jumping, and can feel things in the 'wrong place' when sitting or laying. The biggest issue is the hit to my self confidence and sexuality- it just makes me feel gross, unattractive and anything but wanting to DTD!

Have actually found Kegals make my symptoms worse?! Anyone else noticed this?

Need to go and see the GP soon, but there's no great solution so 😶

Verbena87 Wed 15-Aug-18 21:31:08

grabbinglife it’s worth getting a referral to a women’s health physio, especially if kegels are making it worse as you could either be recruiting the wrong muscles/tensing in the wrong way (in which case physio can check and correct), or you could have an overly tight pelvic floor and need exercises to relax the muscles (again, pelvic floor physio will be able to check and help).

It’s true that there’s no perfect fix, but I’ve seen big improvements in my symptoms using kegels, Pilates and electrical stimulation of the muscles. I have a pessary fitting coming up as well so will try and report back here on how that goes.

The sex thing is rubbish though. It’s not even the feeling broken thing here, but because of nerve damage and the seemingly permanent flipping massive gap between the side walls of my vagina (@smellsofelderberries does that sound like avulsion? I’d already sort of self-diagnosed with that after some googling) it’s just numb and disappointing. Anyone got any magic tips for sorting out fulfilling sex with a knackered up fanny?!

littlecabbage Wed 15-Aug-18 21:45:36

@starlings27 That sounds rough re the nerve pain, but glad things are sorted now. Well done on the hoovering boycott!

@grabbinglife1123 No, I just find kegals make no difference at all.

Had my 6w postnatal check today and asked for referral to a pelvic physio, which my GP agreed to, so I'm hoping things can be improved a little. Currently, a half hour walk around our village makes me feel a bit sore by the end sad. Whereas prior to the recent birth, I still had a cystocoele and rectocoele but it didn't stop me walking any distance, or exercising in other ways.

I'm going to ask to be assessed for levator ani avulsion as mentioned by @smellsofelderberries as I've been reading more about it on Prof Dietz's website. Here is some info:

All we can say right now is that pelvic floor muscle trauma (‘avulsion’)

-weakens the muscle by about 1/3 on average
-makes the muscle more stretchy by about 50%
-enlarges the opening of the pelvic floor (the ‘hiatus’) by about 1/4
-more than doubles the risk of bladder prolapse
-triples the risk of prolapse of the uterus (the womb).
-triples the risk of a prolapse returning after pelvic floor surgery.

Apparently, risk of this injury increases as you get older, and a forceps delivery triples the risk of having it. Surgical repair of the muscle has traditionally been fairly unsuccessful but Prof Dietz is trialling a new method of repair, with promising results.

Here is a link to the website. The "general info" page is helpful for those who don't have much medical knowledge.

sydney.edu.au/medicine/nepean/research/obstetrics/pelvic-floor-assessment/Pelvic_Floor_Assessment/Welcome.html

Starlings27 Wed 22-Aug-18 11:42:03

@littlecabbages, OMG your thread cursed me. Actually cursed me. The bloody thing has relapsed, literally the day after I posted. I can't believe it. I went to the GP and Monday and she confirmed the rectocele has occurred again, though she was very unsympathetic and basically shrugged and asked what I wanted to do about it? She seemed to think I just should get on with it. Last time I had no discomfort, but now I can feel it all the time (though GP said it was small). I pushed for a referral to a consultant gynaecologist, and luckily I have health insurance now which will cover me, so I'm seeing someone within the next two weeks, and they'll go from there. I'm extremely lucky they aren't treating it as an existing condition too - I didn't have the insurance when I had the repair done but I've held it for long enough now that it's ok.

I'm so gutted. It took 2.5 years to have pain free sex after the last repair, and now I'll have to make the choice between another repair (which I guess they may not even want to do) or this constant nagging discomfort. We were considering ttc but I've said that there's no way I'm having another child now. I'm not seeing the same consultant as he's not on my insurance company's list, and I'm not too bothered by that - maybe he wasn't very good!

littlecabbage Wed 22-Aug-18 13:14:28

@Starlings27 oh my goodness, I am so sorry - it appears I have scary witchy powers I knew nothing about!

But seriously, sorry to hear that. Can you link it to any strenuous activity, or did it just happen? Your GP's attitude is disgraceful. Bet she is covering up her crap knowledge about this problem. Glad you've got referral though. Good luck, let us know how you get on. Bloody prolapses angry

devuskums Wed 22-Aug-18 13:29:16

There are some really good, supportive private groups on Facebook and a wealth of information from women all over the world like the Association for Pelvis Organ Prolapse support. That group have almost 10 thousand members and they seem a friendly bunch

devuskums Wed 22-Aug-18 13:29:55

Oops * pelvic not pelvis blush

itbemay Wed 22-Aug-18 13:35:25

12 years ago i had a rectocele repair and a trans vaginal mesh insertion for incontinence, post 9lb baby with no proper repairs after tears and a 2nd 8lb baby. even though the mesh i had is on the 'hot list' i can honestly say i have had no issues whatsoever with both, my rectocele repair went well, quite painful after but wasn't horrific.

GoatWoman Wed 22-Aug-18 13:56:45

My appointment with the urogynaecologist isn't until October but I'll update then.

My situation has worsened as I stupidly started exercising quite frantically, I think at the thought of 12 weeks recuperation and no exercise.
I now have trouble weeing in the evenings and have to kind of push something up and out of the way sad

I went to the GP who basically gave me an 'oh just fuck off' look as I was crying and offered me anti-depressants!

I'm so gutted, I never thought this would happen to me, I've worked so hard to be fit and healthy.

Verbena87 Wed 22-Aug-18 15:50:17

goat it is shit when because you’re upset about a physical symptom GPs do the ‘well, you’re probably being a bit hysterical dear’ thing. Too many friends with serious gynae issues (endometriosis, polycystic ovaries, issues with cervix) who were told for years it was in their heads. And we’re only late 20s/early 30s so cant imagine it’s going to get any better as aging continues to happen. Grrr! And depression doesn’t normally present as crying/being weepy anyway. Even more grrr!! But also a big hug and a large gin, if either of those are any use to you?

I’ve got my pessary fitting tomorrow and remember you asking about that earlier in the thread, so will come and report back.

And (TMI/pissy unpleasantness warning!) weeing on all 4s in the bath/shower has helped me before when stuff felt especially bad. Lock the door if poss though!

Hope your appointment helps. A friend who is a retired GP suggested I could try wearing a superplus tampon to see if it wedged the bulge up, but I felt a bit anxious about tss and when I did try it, was really drying. But it did help a bit if you need a break from the uncomfy.

Starlings27 Wed 22-Aug-18 16:31:55

I will update as soon as I see my consultant. It's very demoralising when GPs etc don't treat it seriously.

I think maybe I have been lifting and carrying my pre-schooler too much. DP was away last week and DS always wants to be carried to bed, so I was doing it.

@GoatWoman, if it's any consolation, I don't think it has much to do with fitness tbh - if you ended up with a huge baby or a damage from an instrumental delivery, no amount of healthy eating and exercise is going to help.

Starlings27 Wed 22-Aug-18 16:41:49

I was thinking how badly we designed we are. Prolapses and slipped discs etc really are evidence that we should have stuck on all fours instead of evolving to walk on our hind legs (so to speak). All this weight shouldn't be on our pelvic floors!

BlueBerryBiscuit Wed 22-Aug-18 17:33:07

I'd be interested to see how your pessary fitting goes verbena as I've been recommended one by my consultant. I have a mild prolapse and after lots of urodynamic testing etc I've been referred for physio and recommended to try a pessary.
I saw the consultant gynaecologist earlier this year after finally deciding I'm fed up of the pain and incontinence (and putting on loads of weight thanks to giving up running!) and at my most recent appointment this month have been told my nhs trust are suspending all mesh surgery so I can have physio and live with it.
Sadly the physio I am seeing is absolutely rubbish and has given no support, no idea of how to do kegels or anything! I've seen a private physio and she's helped but the advice is so conflicting and vague.

Verbena87 Wed 22-Aug-18 17:58:35

blueberry the people behind the nhs Squeezy app are in the process of compiling a U.K. directory of pelvic floor physios so maybe keep an eye out for that? They’re on Instagram which is how I know (there’s quite a lot of good knackered fanny info on there in amongst the smugness/narcissism/food/adverts!!)

littlecabbage Wed 22-Aug-18 21:33:14

@devuskums Thanks, I must look again at the APOPS FB group. When I looked previously, it seemed v depressing but loads of MNers have recommended it, so perhaps I visited on a bad day@

@itbemay thanks for your very positive story. 12 years is the best I've heard. Long may your fanjo remain symptom-free!

@GoatWoman I know what you mean, never thought it would happen to me either. I knew my body was becoming unfit and untoned as a result of pregnancy and then having no time to exercise with a young baby/children, and I knew certain parts woukd always be a bit saggier than previously, but never expected that something would actually permanently restrict my ability to exercise or lift stuff for the rest of my life sad.

@Verbena87 Good luck for tomorrow. Hope you see an immediate improvement.

@Starlings27 I lift my preschooler a lot too. And yes, I do think animals are better off on their 4 legs, although I feel that my pelvic floor was only damaged by births, not by pregnancy.

@BlueBerryBiscuit I'm surprised to hear you've been told physio is your only option. I thought there were other surgeries available that don't involve mesh?

Verbena87 Wed 22-Aug-18 21:51:38

Hmm, my sister has cows and they don’t all escape the dreaded prolapse either! I think female reproductive systems in general are a bit of an evolutionary work in progress.

There’s definitely non-mesh surgical options as the consultant I see has never used mesh - still definitely putting off surgery as long as possible though, and certainly until I’ve ‘completed my family’, as they say.

vivariumvivariumsvivaria Wed 22-Aug-18 22:02:08

There's an off-the-shelf pessary called incostress and another called coniform that my physio showed me.

I got an incostress, it's like a silicone tampon and is great. If it stops working I'll be going for a bespoke pessary from a gynaecologist.

Lets me run without worrying about wetting myself or my fanny bouncing about.

Verbena87 Wed 22-Aug-18 22:04:53

viv sounds good. Do you know the type and grade of your prolapse? Am trying to not get too excited about the possibility of a run which currently I think might make me actually cry with relief (running is Prozac for my soul)

vivariumvivariumsvivaria Wed 22-Aug-18 22:07:56

G2 cystocele - after birth. Its' actually ok with having had physio

I did see a physio again before going back running, and I'm not very good at running - which probably helps! Im happy with a half hour to n hour run on soft ground. Sometimes it's worse than others, like before my period - so, I swim then instead.

I agree, running is good therapy.

Verbena87 Wed 22-Aug-18 22:31:53

30-60 minutes off road 3x a week would make me a very happy woman. Grade 2 cystocele here as well but with slight uterine prolapse as well and not tons of improvement despite physio so will see how it goes.

I do swim a bit but unless it’s outdoors/the sea it doesn’t give me the same mood boost.

GoatWoman Thu 23-Aug-18 11:42:00

Verbena and everyone, thank you so much for all to our loveliness.

It's great too have the support so thanks to the OP for starting the thread.

Cutesbabasmummy Thu 23-Aug-18 12:21:07

My pelvic floor physio was bloody shit. The hospital were so overwhelmed they suspended the service and then tried to get rid of most patients by saying "Just do you PF exercises" . Err, what do you think I've been doing for 3 years?? My PF is on and off in spasm so very painful. I'm now paying £66 per session for a private physio who gets the issues and I feel I'm improving slowly.

Verbena87 Thu 23-Aug-18 17:26:31

Ok, urogynae update: my prolapse has improved since he saw me in February (hooray for the fanny zapper! Also hooray for soldiering on through boring kegels every damn day.)

He doesn’t think I have levator avulsion, rather that the levator muscles are badly stretched, but said it’s tricky to confidently diagnose until surgery (ie you need to actually open someone up to be 100% sure about whether the muscle is still attached to the pelvis).

As it’s still bothering me and I’m still breastfeeding he’s given me some topical oestrogen pessaries to try, as they can sometimes help tighten/plump up vagina tissue, so will report back on those as well (my mum said “oh yeah, I’ve had those for menopause dryness. Don’t play around with the applicator: I catapulted the first one across the room”)

And I have a slightly terrifying rubber ring with which to jam stuff up out of the way. Haven’t tried to run in it yet but will try and get out soonish.

Verbena87 Thu 23-Aug-18 17:48:18

Bit of tentative jumping up and down with pessary in place is encouraging.

Getting pessary in place is farcical and hilarious. It is huge. It it slippery. It pings unfolded at innoportune and indeed labia-pinching moments. Practise makes perfect, right?! blush

GoatWoman Thu 23-Aug-18 21:00:45

Brilliant news Verbena, keep soldiering on!

I'm so proud of you and your upbeat attitude, even though I don't know you!

Terrific work!

littlecabbage Thu 23-Aug-18 22:09:29

Hey *@Verbena87*, that all sounds very positive. Your hard work has paid off! And it sounds as though thjngs may improve further once breastfeeding stops?

The pessary sounds scary indeed but worth it I guess if it gives significant improvement.

Verbena87 Fri 24-Aug-18 08:27:26

Ah thanks goatwoman (I definitely cope better when I can hang onto my sense of humour.)

littlecabbage definitely glad I’ve got the pessary; when I initially removed it after wearing for a bit to check it didn’t slip out/hurt my anterior wall felt almost normal (no bulge) for 5 minutes or so, so I think it really is shoving stuff back where it belongs when it’s in. Happy days.

Verbena87 Fri 24-Aug-18 15:52:15

Ok, fanny-appointments-update part 2: saw the continence nurse at the hospital today because I have to give them back their fanny zapper sad BUT she’s given me a VAT exemption form and programming info so I can get my own for £67 - was thinking I’d need to spend £150 on the snazzy kegel8 prolapse one so that’s fab news. Thought I’d share as I can’t be under the only hospital to offer this, so could be well worth an ask.

Good luck all.

timeisnotaline Fri 24-Aug-18 16:18:57

Thanks for the update. I’m another one who hopes to run again. I’m currently hoping post natal Pilates will get me back there (g2 cystocele , discomfort and loose sagging sensation but no other issues, eg no incontinence)

Verbena87 Fri 24-Aug-18 16:40:28

time it sounds like we’re symptom twins (except my wretched cervix is pretty saggy as well). I’ve done Pilates from 8 weeks postpartum and all the clinicians I’ve spoken to have said it will definitely be helping so that’s definitely a good shout.

The nurse today said really running isn’t good for prolapse, but it’s not as bad as trampolining and the benefits to my physical and mental health will outweigh the harm. I said “do you think it’s really irresponsible to run?” And she said “definitely not, you have to look at your health as a whole”

Will let you know how I get on once I get out - keep me updated on how you get on too?

I also bought some ebv running shorts which are meant to be great, but for me they made no difference to my prolapse, chafed, and were expensive.

timeisnotaline Fri 24-Aug-18 21:42:19

Yes please do keep updating! I will google those shorts although the mind boggles at shorts that can reach up my vagina and hold things in place grin.
I’m on holiday and not doing Pilates and doing too much walking and lifting my monster toddler and I can really tell the difference sad . I am having pt sessions for Pilates to nail the technique and starting group classes shortly (post natal Pilates classes - byo baby). I’d rather get back to running without a pessary given I want more babies and prolapse risk is higher with menopause etc - id really like to know there are non surgical steps I could still take to help keep running and general activity up for a couple of decades. I would settle for fast active walking right now though angry

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