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.

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

@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 . 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!

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

@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.

@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.

Guess we just agree to disagree!

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.

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.

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

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!

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!

@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.

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

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

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

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.

@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! 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.

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.

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 😶

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?!

@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 . 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

@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!

@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

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

Oops * pelvic not pelvis