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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.

littlecabbage Sun 28-Jul-19 19:49:23

Hi K0714879

Who is your question for?

FuriousR Tue 03-Sep-19 17:33:38

@littlecabbage have you looked at a pessary? Your lifestyle is never likely to be as hard on your body as it is now (kudos on having four children!) and there is emerging evidence that pessaries may be therapeutic in the post natal period. Either way, if you're deciding between nothing and surgery but nothing is uncomfortable, why not try a pessary and use it as you see fit. I have a cube and take it out nightly like a tampon. Just a thought. X

littlecabbage Tue 03-Sep-19 18:05:52

Thanks FuriousR. Funnily enough, I had an assessment with a new urogyn a couple of weeks ago, and was fitted with a ring pessary. I could feel it all the time immediately but kept it in for a few days to see if it became unnoticeable. But it gave me a constant ache in my pelvis and also it felt as though the entrance to my vagina (TMI) was being held open more. It made no difference whatsoever to the feeling of a bulge (cystocoele) in my lower vagina. I ended up removing it (which was kind of scary!).

I know I could try a smaller one, but I have been pondering whether it would be useful. I wonder whether they are more useful for women who have their cervix/uterus descending a bit, rather than having a cystocoele? Do you mind me asking what your situation is?

I have more to update here from the urogyn actually, but need to sort the kids out now, so will update soon. Thanks for suggesting a pessary though - I appreciate it.

littlecabbage Tue 03-Sep-19 18:10:02

Sorry FuriousR, realised you have already explained your prolapses upthread smile

FuriousR Tue 03-Sep-19 19:30:49

Depends on the pessary. Rings are predominantly for cystocele and uterine prolapse but needs to sit above pubic notch on the sling of the levators. If it drops lower, it sits within the muscle and can be an indicator of avulsion. Also, the nhs ones are horrible plastic things - the nicer ones are pink silicon (made by Milex). May also need a ring with support if cystocele not supported by open ring. I have a cube as rings don't work for me with avulsion damage. Size three perforated. Basically sorted it myself as urogynae useless. Ordered it myself online. Rings also don't help with rectocele whereas cube does. Up to you but if you're uncomfortable I'd persevere - it doesn't mean you're stuck with it but it might prevent worsening and help with exercise and long days with children etc. There are disposable ones you could order to try and if they are good, you could get a silicon cube. Impressa or contiform. Expensive to use long term cf cube but could indicate whether it would be helpful. Other option is a gelhorn but many gynae doctors here don't suggest self management. In other countries, self management of gelhorn is common although trickier and can't have sex with it in. Tbh, not sure how many people have sex with pessary in even when it's one that is supposed to be ok for that. They often don't fit quite right for that. Hope that helps. There's a fb group 'pessaries and pelvic organ prolapse' run by a lovely lady called Gaynor who sells and invents pessaries but she's closing her business, sadly.

Verbena87 Tue 24-Sep-19 21:27:21

Just popping back in after a mumsnet break to see how folk are. Furious that’s interesting about the ring/avulsion as mine definitely sits below the notch but really does still seem to help. From what you’ve said though a cube might be even better so may investigate.

littlecabbage sorry to hear you’ve not had a quick win with the pessary, that’s a bummer. Hope you are keeping ok generally.

I’m mostly not noticing my prolapse these days and feel so lucky to be in this boat. Still using pessary/EVB shorts combination for running and still doing daily kegels, but...

* nerve damage is better, vagina is no longer riddled with numb bits, sex feels like sex again, HUZZAH! It took nearly 2 years. It felt like 200.

* anterior wall is still bulgy, cervix is still low, distance from hip to hip internally still wide-as-a-prarie-sky (I think I’ve got avulsion), but dragging/heaviness/tampon-wedge sensations are rare and I generally feel much more normal/at home in my body

* I built my running back up slowly and just did a 20 mile fell race with no discomfort (in my pelvis, anyway. My legs ached and the future of several toenails seems uncertain at best) and no return of the drag/drop feelings.

* I am still breastfeeding. I think maybe longer term feeding affects things a bit less/your body adapts (based totally on gut feelings as I can’t find any actual science to back me up). If anyone knows how to get a strapping 2 year old to leave boobs alone with a minimum of distress, let me know.

Sending cake and flowers to all who might need them.

littlecabbage Sat 28-Sep-19 22:11:46

Hi All, especially FuriousR and Verbena87.

Sorry FuriousR for not responding sooner to your last post. I did read all your pessary advice when you posted it (you are an absolute fountain of knowledge on the subject!), and meant to reply sooner, but life got in the way for a while. I haven’t tried another pessary yet, but mainly because things feel a bit better again at the moment. I’m not sure why, but things felt really rubbish about the time I saw the urogyn, but have randomly improved since. I still find I’m more symptomatic when I’ve had a poor night’s sleep, but otherwise things are okay. I still think I’d like surgery in the long term though.

When I saw the urogyn, he dispelled a few myths about surgery and relapse rates. For example, the “relapse” rates include women who have had a cystocoele repaired, and then develop a rectocoele some years later. It is recorded as a relapse but doesn’t mean that the first surgery has failed, just that there is another area that has become weak. And that area may have become weak anyway over time.

Anyway, we definitely agreed that now isn’t the best time for surgery with having to lift kids all the time etc, hence trying the pessary. I mentioned that I hate the way the entrance to my vagina feels now - like it doesn’t hold itself closed any more, and he said that some of my perineal muscle is missing, and that could be repaired on its own, or as part of prolapse surgery. Something to think about.

Also, the hospital is just starting to use a special ultrasound scanner to assess women with prolapses, so I’ve been booked in for that in Jan. I’ll mention the pessary issue then but don’t feel particularly inclined to try another, as things are okay at present. Although if he says it may prevent worsening, then perhaps I should consider it? Good to know about the Milex ones FuriousR and the different types, thank you.

Verbena87, I’m so glad to hear how well things are going for you. Especially the numbness disappearing, yay! Are you thinking of having any more children? I think it is great that you have put such a positive update on here. I think sometimes on “prolapse forums”, there is a very negative skew, as the success stories just get on with their lives without a backward glance (can’t blame them really). Looking at some of the American forums where some women can’t afford treatment, I am so grateful for our NHS.

littlecabbage Sat 28-Sep-19 22:16:03

Btw, here is a video I found really interesting and positive. It’s a talk by a POP surgeon, Dr Gerry Agnew:

Unfortunately, I fear that I may have the “church door” mentioned in this video grin

FuriousR Sun 13-Oct-19 09:14:15

Have just tried a sponge pessary and feels brilliant- little cabbage, maybe worth a go? Have the pink jade and pearl one and, embarrassingly, managed to get it in rolled without trimming as my vagina is so wide. However, feels so comfy and supportive. Can use them for periods too if get a few spares. Might not be as good at the end of the day but for now I am so excited!

littlecabbage Sun 13-Oct-19 18:19:32

I've never heard of sponge pessaries. Thanks, I'll look into them.

SIstawoman Thu 07-Nov-19 13:43:34

Hi I am looking for a good urogynaecologist in the london area. Does anyone know if Michelle Fynes (used to be at ST Georges) still works privately in London as she now appears to work exclusively for the NHS in Cambridge.
Also any recommendations for a multidisclinary nhs pelvic floor centre in London ( urogyn, colorectal and pysio/iofeedback) would be very gratefully received.

littlecabbage Fri 08-Nov-19 11:57:57

Sorry, I can't help I'm afraid.

FuriousR Fri 08-Nov-19 12:39:17

I think Professo Khullar is supposed to be very good.

littlecabbage Fri 08-Nov-19 13:09:11

FuriousR, how are you getting on with the sponges?

Sistawoman Sat 09-Nov-19 12:05:42

Going to do some research and not thrilled at the idea of surgery so reading this thread with interest.

FuriousR Sat 09-Nov-19 12:55:30

@Sistawoman - what issues do you have? Recently post partum or not?. I know someone who did what has to be described as 'exhaustive' research into London urogynae docs and ended up confident with Prof khullar. Three of my friends have said their mums have had pessaries fitted recently (all in their late sixties) so there are options. X

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