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AIBU?

To ask for successful prolapse repair surgery stories? Really struggling.

55 replies

Inghean2 · 03/10/2022 16:39

I'm 35 and have been diagnosed with a large rectocele and also uterine descent.

Exhausted physio and pessaries and now I've been given a date for surgery soon.

When I look it up, all I seem to find are cases where other prolapses appear after, or where surgery only lasts at most a few years then the repair fails and it comes back Sad

I'm in so much discomfort, and have such issues with bowels because of it, sex is a big problem. My quality of life is bad and looking up the stats and surgery stories is getting me down so much.

Sorry for the AIBU traffic-posting, I am just so scared and could really do with hearing some success stories where repairs (non mesh) lasted more than a few years.

Can't help but think if men had these issues there would be a cure by now..

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Am I being unreasonable?

AIBU

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Bridget944 · 10/10/2022 21:49

I am in the same situation but only 28 and want another baby. Hope we hear back from this post I am watching. How long did it take for them to refer you for surgery? I hope the road ahead of me isn’t really long

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Bridget944 · 19/10/2022 18:40

You sound like me I’m 28 :( have you got any children? What op have you been offered for the womb? I’ve got a large rectocele and my cervix is only about 2cm in also. Sex is poor and I’m so depressed. Can I ask how long it took and what it took for you to be offered surgery? I feel your pain your not along :( I want an operation so bad but been waiting nearly 3 months already just to see a gyno. Can I ask what your wait times were like and advice they have given? I think we tend to hear bad stories more than the good as when it goes well people just get on with life. Sending hugs please keep me updated

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W0tnow · 19/10/2022 19:02

Bumping for you.

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Ithinkimightbebroken · 19/10/2022 19:10

I haven’t had surgery but I’m in the same position (although pregnant again so I’ll be even more knackered now)

I hope your surgery goes really well and this nightmare is over for you soon!

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Ridingthegravytrain · 19/10/2022 19:19

I had mine about 7 years ago. Rectocele repair which was extensive and perineoplasty.

Unfortunately some of the repair failed and I have developed a cystocele and uretheocele BUT I have since been diagnosed with a degenerative tissue disorder which meant it needed specialist surgery that I obviously didn't get. I will eventually get round to having it all done again.

However, don't let this get you down as even with new prolapse and partly failed op it is still so so so much better than pre op it was totally worth it for me.

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Inghean2 · 20/10/2022 13:32

Sorry I thought this thread didn't get any replies.

@Bridget944 Thanks and sorry you are in similar position. I have 2 children, both born by c-section with no labour so I never thought prolapse would happen to me. My daughter has just been diagnosed as mildly hypermobile so I really hope that it's not me she got the hypermobility from, cause I've read that can lessen chances of surgery being a success.
I've been offered hysterectomy with back wall repair. I am really not sure about the hysterectomy though. I don't want to get early menopause because I have other issues that would make worse. I have been reading about Vaginal sacrospinous hysteropexy with sutures operation. Have you heard of it? I am going to ask for that instead. Although I wonder would it make it more complex if you need a hysterectomy later on.
As for advice, I was just told do pelvic floors. I waited ages to see gynae, the wait times are ridiculous.

@Ithinkimightbebroken Thanks and sorry you are also in this position. Let me know how you get on please, I will update too.

@Ridingthegravytrain Thanks so much for giving your experience. Can I ask did you also have a hysterectomy? and how did you know / get diagnosed with the tissue disorder? My 16 year old daughter just got diagnosed with mild hypermobility. I've read that makes chances of surgery failure higher so I'd like to know if I also have it. It is reassuring to know that things are still better than they were pre surgery even with it part failing. I'm just scared of surgery making things worse, you know xx

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PunishmentRoundupWithJoon · 20/10/2022 13:36

Sorry to hear what you're going through, OP, nothing to add but am just bumping for you. Really hope you get some useful replies 💐

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Bridget944 · 24/10/2022 19:50

Hey guys do you know if surgeons can still refuse if you offer to pay? So worried they will say no as it’s mentally and physically affecting my day to day life so defo worth the risks to me

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hulahooper2 · 24/10/2022 20:03

I had surgery 21 years ago , best thing ever and no problems since, good luck

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Bridget944 · 24/10/2022 20:19

@hulahooper2 can I ask your story and your age and if it was nhs? I’m only 28 so worried nhs won’t help me. I’m trying my hardest to get info and go private. I have rectocele and my cervix is very low. Only have 1 child

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stayathomegardener · 24/10/2022 20:21

My Mum, requested a prolapse repair against the consultants desire for a full hysterectomy C1987
Apparently he was most unpleasant Dr Valentine.
I think the recovery took a bit longer and she had to be very cautious initially but she was thrilled and still all in place/continent at 88.

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Bridget944 · 24/10/2022 20:25

@stayathomegardener thankyou for your story! That’s the thing I do want another baby in the future but currently single so won’t be for years yet. So don’t want my womb removed but defo needs to be put in place for sure. Feel like everything’s just fallen I can’t have a bowel movement and sex is rubbish :(

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HotCoffee22 · 24/10/2022 20:26

Ithinkimightbebroken · 19/10/2022 19:10

I haven’t had surgery but I’m in the same position (although pregnant again so I’ll be even more knackered now)

I hope your surgery goes really well and this nightmare is over for you soon!

Just hear to say I got a uterine prolapse with the first and my second pregnancy, with c section delivery didn’t make it any worse. Fingers crossed it’s the same for you.

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Bridget944 · 24/10/2022 20:37

@HotCoffee22 have you been offered any surgery for your prolapse ? What are your symptoms. Sending hugs

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edwinbear · 24/10/2022 20:51

Hi OP, God I remember the feeling of absolute helplessness well. DS was a difficult, long labour, culminating in forceps, birth. I tore up to my cervix, retained placenta, an hour being stitched up, it was awful.

6 weeks later things still felt really odd, that ‘falling out’ sensation. I was diagnosed with a rectocele and cystocele, but as DS was my first, I was advised to wait until our family was complete. There is a 2.5yr age gap between DS and DD (easy birth, presumably because I no longer had a pelvic floor), but those 2.5yrs were hell. I’d get annoyed with DH if he didn’t park close enough to the supermarket entrance, because he didn’t seem to get every single extra step I had to take was uncomfortable and just reminded me I was ‘broken’. I was envious of my NCT mates who didn’t suffer pushing their prams around on days out and could lift their car seats out of the car without pain.

I had my non mesh repair in March 2013 and all is well so far! It’s been life changing. I do look after it, I don’t run or lift weights anymore, but still swim (I did a cross channel swim in 2017), walk for miles and spin classes. I keep my weight down (that made quite a big difference when waiting for surgery) and I’m so pleased I had it done. It’s a long recovery, I was in hospital for a week, in bed at home for another 2-3 weeks and off work for 7, but well, well worth it.

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edwinbear · 24/10/2022 20:52

Oh and I was 32 when diagnosed.

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mauvish · 24/10/2022 20:53

Bridget944 · 24/10/2022 19:50

Hey guys do you know if surgeons can still refuse if you offer to pay? So worried they will say no as it’s mentally and physically affecting my day to day life so defo worth the risks to me

Yes, the surgeon can (and indeed SHOULD) refuse to do a procedure that isn't right for you, payment or no payment. In fact they can get struck off for doing unnecessary or inappropriate surgery.

I used to work in O+G and I don't clearly understand all the different surgery options for prolapse. By all means ask your surgeon direct questions about different sorts of surgery and why s/he might recommend one but not another. But remember too that it takes many, many years to become a consultant and they don't get all their info off the internet!!

Just in case the following is useful for anyone else - I had a small cystocoele after giving birth but it's never got any worse, even after menopause. I've also got a posterior wall prolapse which has worsened since I had a hysterectomy (done for a different reason). What helps for the prolapse are these things: keeping my weight down; trying to avoid constipation; and oestrogen cream occasionally (as I'm postmenopause).

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Bridget944 · 24/10/2022 20:57

Thank you so much for taking time to reply I’m so happy it’s all stayed in place ! What surgery did you have I want my womb lifted back up and pretty sure I have a rectocele :( really feels horrid. How did the surgery go I’m so scarred but I know I can’t live like this any more

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Bridget944 · 24/10/2022 20:59

@mauvish tha you. I mean I get it if they don’t think it’s bad but I can’t live like this any longer. I defo need something doing hopefully they won’t refuse

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edwinbear · 24/10/2022 21:03

I’m honestly not sure what the official name of the type of surgery I had is called, but fortunately, my consultant was adamant he wouldn’t use mesh as he felt it hadn’t been used for long enough to know the long term outcome - he was very wise. I think he used an old fashioned method of cutting and stitching up a bit tighter! I had mine done privately via insurance, but did see an NHS consultant as well for a second opinion as I wanted to be absolutely sure I was doing the right thing. Surgery was fine, I was obviously sore for a while, but the pain was well controlled with meds. I was very tired for a few weeks afterwards, but think that’s typical after any sort of surgery - and it’s not a minor operation.

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illbeinthegarden · 24/10/2022 21:05

Can I ask when you noticed something was wrong? Was it obvious? I'm having some issues and am building up to making a gp appointment. I have wondered about prolapse but thought that it would be obvious if it was that.

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edwinbear · 24/10/2022 21:06

I would add though, that he would not have operated if he’d thought I wanted more DC. The pregnancy itself can destroy a repair regardless of the delivery method, and then trying to operate again on scar tissue would be unlikely to be a success.

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Monkeytrousers04 · 24/10/2022 21:11

Are you allowed to recommend things on mumsnet? There is a fantastic online programme for all things prolapse/ pelvic floor/ core issues. I’ve done it myself with great results and there is an online community on fb (which you can be part of without having to buy the programme) with access to some amazingly knowledgeable people and a really supportive community. Imagine mumsnet but all the threads are related to prolapse/ diastasis recti/ pre-postnatal pelvic floor issues.

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edwinbear · 24/10/2022 21:14

For me, it was obvious something was wrong by about 6 weeks. I was too squeamish to look or have a feel, though. It was a sensation of something ‘falling out’ or a bulge coming out and that my cervix felt ‘low’. I was only 6 weeks PP at that stage and had a traumatic birth, so when I was checked over they could see immediately there was a prolapse, but said it might improve as I recovered from the birth - once I stopped breastfeeding and with some pelvic floor exercises/losing the baby weight. Those things did help, but I saw a gynae again after about 6 months, who confirmed it would need surgery.

Book the GP appointment - the not knowing/stress can be worse than knowing what’s wrong and having a plan. They will hopefully refer you to a gynae and there might be a bit of a wait, so the sooner you’re in the system the sooner you’ll have some answers. It doesn’t commit you to anything but you might feel reassured knowing you’re taking some action.

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hulahooper2 · 24/10/2022 21:26

@Bridget944 I was 39 , after my second child , and on NHS

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