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Original poster

MN Can we please support/highlight this? Pelvic Organ Prolapse

89 replies

Shakey15000 · 13/10/2017 19:55

PELVIC ORGAN PROLAPSE

There. In big letters. Affects so many of us (there are some really supportive threads on MN) but it needs awareness raising.

I belong to APOPS-

www.pelvicorganprolapsesupport.org/pelvic-organ-prolapse-the-silent-epidemic-3

A really informative and helpful site. There is also a FB site that again, is extremely informative and supportive.

The founder has recently embarked on a large campaign to highlight awareness. I enquired if she had approached Mumsnet (as it seems obvious) and she informs me that yes, she had approached MN but sadly had no response?

Is this something that can be rectified revisited? It's such a huge, invisible and relatively unknown condition that I'm sure MN would be a great advocate. Perhaps MN could invite the founder to a Webchat?

I, for one, have suffered, am still suffering in fact. I considered myself to be quite well informed and I'd never heard of it! I actually though it was predominantly a "male" thing, then realised I was muddling it up with prostate Blush

Anyhow, would anyone like to badger suggest a Webchat about it? The founder has said she is more than happy to send the book and I'm quite sure she's also jump at the chance to use MN's worldwide platform to raise awareness.

Thanks in advance

OP posts:
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Original poster
Shakey15000 · 19/01/2018 22:01

@FlissMumsnet

No problem Smile Any chance of it being pinned on the "active" board? in for a penny...

OP posts:
MNHQ
FlissMumsnet · 19/01/2018 21:34

Hi Shakey15000 - Thanks so much for re-posting the link for Q's, it seems there's huge support for this issue amongst MNers all women

We're grateful for your persistence in leading the charge Gin

Original poster
Shakey15000 · 19/01/2018 19:50

Hi all Smile

Here's the link to the webchat on Jan 23rd for anyone to post any questions in advance

www.mumsnet.com/Talk/mumsnet_live_events/3144287-Webchat-with-Sherrie-Palm-of-Pelvic-organ-prolapse-support-organisation-Tuesday-23-January-9-10pm

OP posts:
Original poster
Shakey15000 · 05/01/2018 14:02

@RachelMumsnet

Hi Rachel, do you know when members can post questions on the webchat in advance type thing?

Thanks! Thanks

Update (for anyone interested) I'm back at work following sphincter repair, on a phased return so not too bad. Awaiting next appointment with urogynae around Easter to discuss next steps ref prolapses. Bladder leakage has definitely worsened sadly, as has the need to "splint", perhaps the most depressing, degrading aspect of this bloody condition SadAngry

OP posts:
Terrylene · 30/11/2017 17:29

Thanks - I will put the date on my new calendar Smile

Original poster
Shakey15000 · 28/11/2017 13:44

Thank you so much! A worthy topic indeed

OP posts:
MNHQ
RachelMumsnet · 28/11/2017 10:21

Hi all, we've been in touch with Sherrie Palm at Pelvic Organ Prolapse Support.org who has agreed to join us for a webchat on Tuesday 23 January between 9 and 10pm. We'll start a new discussion thread for this approx one week before-hand where you can post up advance questions. As soon as this is up we'll link to the new thread from here and also promote across the site.

Many thanks to you all for suggesting this.

Traffig · 14/11/2017 19:40

Thank you@ HQ Flowers

Terrylene · 14/11/2017 16:27

Please do. It is a big deal for a lot of women, after childbirth and for years after.

Original poster
Shakey15000 · 14/11/2017 13:05

FANTASTIC!! Thanks so much Flowers

OP posts:
MNHQ
LornaMumsnet · 14/11/2017 10:53

Hi all,

We've discussed this in office and we'll definitely be doing a webchat on pelvic organ prolapse in the future. We don't have a specific time and date for this yet (and it might take us a while to find one) but it's definitely going ahead.

Many thanks to all who contributed. Flowers

Hidingtonothing · 14/11/2017 06:16

Fully support a webchat, no personal experience but have realised how lucky I have been (so far) not to have had issues following DD's traumatic forceps delivery. Raising awareness and allowing women to make informed choices is vitally important and MN could play a big part in promoting that.

SantasLittleMonkeyButler · 14/11/2017 06:15

I also have/had a prolapse. My symptoms have improved greatly since upping my exercise (I am able to run, thankfully) and losing weight.

However, it still is there - I constantly have the awful low back ache & exhaustion that it brings.

margaritasbythesea · 14/11/2017 06:03

I am completely ignorant about this. By the sound of it i shouldn't be. Thanks OP.

Sound like a gold idea to promote this HQ

NotNowBernard1 · 14/11/2017 05:57

Adding my support as a post-menopausal MNetter.

MNHQ - many of your loyal users are getting older now and don't want to shuffle off to Gransnet so please address this!

Traffig · 13/11/2017 19:45

Adding support also Thanks for raising the issue OP.

Whatcanido13 · 13/11/2017 19:35

I can’t express how important it is to raise this issue. I’m over a year from having my first child and I’m suffering badly physically but also psychologically. I had a proctogram today and just cried the whole way through it thinking ‘how did I get here? Why did no one tell’ it’s hoffific to get this at any age but newly post partum on top of everything else really has pushed me to my limits. It needs to be discussed more openly. Thanks for starting this thread.

BonjourMinou · 09/11/2017 17:57

Adding my support Smile

AuntyElle · 07/11/2017 18:24

I'd really like to see a web chat on prolapse. This is exactly the sort of thing I think Mumsnet should highlight: ie it has a big impact, but most of us known nothing about it.
Not glamorous, but essential.

Terrylene · 01/11/2017 19:13

What everyone said. Finding out if you have a prolapse or not is like a mysterious walk in the dark. I'm sure I still have some sort of urethra one Hmm

Original poster
Shakey15000 · 26/10/2017 00:07

Again, thank you all so much Flowers

It's just awful, the whole bloody lot isn't it? The sheer lack of information, guidance.

If I'd even known about perineum massage pre labour, I could have gone a long way to perhaps prevent my 4th degree tear (I know it's not a given but still...) As it is, due to the birth trauma, my pelvic floor is shot to pieces. And I still shake my head about my ignorance of prolapses.

One (of the many!) symptoms that hurt the most for me was backache. Ye Gads, it used to take me ages to get to sleep, then I'd sleep poorly, then couldn't lie in because it hurt to Hmm Never gave it a thought that nerves etc were squished. When I had surgery in 2015 the backache went, Just like that. I'd suffered for a good..ooh... 5/6 years. The relief was immense. Now, even though my surgery failed (more to do with an undiagnosed ruptured sphincter which meant my pelvic floor was severely compromised. That's just been fixed so hopefully, more support for next round), my backache is still absent. Possibly due to different nerves being squished but it's still great to be without it, despite various other difficulties.

Waffling now Smile Thanks again and Flowers for anyone suffering.

OP posts:
DancingLedge · 25/10/2017 22:20

Thank you so much Amongthewildflowers33

colouringinagain · 25/10/2017 21:48

What she said ^^^

Amongthewildflowers33 · 25/10/2017 14:53

Cannot support this enough.....

Aged 31 with 2 toddlers & been suffering in silence.

Noone can tell me exactly what prolapse I have or the degree .... only 2 options seem to be surgery or kegels with physio with the NHS.
Incredibly disappointed in the NHS & the lack of knowledge. To get a referral to the right person (!) is like pulling teeth & even when you are on a list you are waiting for weeks/months! Meanwhile, we live with pain & discomfort. We can't lift, we can't help others, we are raising kids, we can't exercise or move like we used to, we are struggling with shopping trolleys & lifting our kids into swings! We struggling to go to the bathroom in a 'normal' way - it's horrific!

And yet....
It's SILENT. Completely silent. Noone understands or knows what you are talking about or thinks you must just be weak.

I am not overweight, I don't drink or smoke, I worked out & looked after myself & ate healthily & it can happen to ANYONE.

When I was pregnant, the pelvic floor advice seemed to just encourage you to have a tighter vagina.... & to stop this happening LATER in life. Noone mentioned that suddenly, one day at 30 this could actually happen to YOU!

The Australian government have been fantastic at helping & encouraging ladies with this condition (which is complex & different for every lady as they may have one or a combination or prolapses).
These are EXCELLENT websites:
www.pelvicfloorfirst.org.au

www.pelvicexercises.com.au/pelvic-prolapse-information/

Mumsnet, please help us to find one another, to encourage one another & not to have to suffer this lonely emotional journey alone. You have the power to do it!

SpaghettiAndMeatballs · 23/10/2017 17:36

I'll never forget an embarrassing bodies I watched years ago where the doctor was horrified to find a poor woman had been dealing with an enormous prolapse for years - she was one of the ones they showed the follow up for and the surgery was clearly life-changing for her (as it would be).

I think women spend so much time just coping that they don't realise that they deserve to be fixed too.