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MN Can we please support/highlight this?

(86 Posts)

MNHQ have commented on this thread.

Shakey15000 Fri 13-Oct-17 19:55:13

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

CarolineMumsnet (MNHQ) Fri 13-Oct-17 21:05:32

Hi Shakey and thanks for this. We'll certainly keep an eye on this thread to see what interest there is for a webchat on this topic. If enough folk are keen, it is something we'd be sure to look into. Thanks again flowers.

KellyBeth Fri 13-Oct-17 21:44:37

I have pelvic organ prolapse, thank you for this post. When I was diagnosed, I had never heard of it and had no idea that my uterus, bladder, or bowel could fall. It affected my ability to go to the bathroom, i am physically active and I had to stop running, I had no libido and when I did have sex it hurt. When I talk about this to my female friends, they don't know about it either. And then I tell them what the symptoms are and I have had a few go to their doctors to discuss symptoms. Thank you for addressing this!

Shakey15000 Fri 13-Oct-17 22:21:36

Thanks @CarolineMumsnet

As you can see here-

www.mumsnet.com/Talk/general_health/3029810-Pt-9-Oct13-Any-old-prolapse-Uterus-womb-prolapse-rectocele-cystocele-enterocele-urethrocele-incontinence-pelvic-floor-anterior-and-posterior-repair-TVT-etc?watched=1&msgid=72606709#72606709

This is the 9th consecutive thread on the topic which obviously highlights that it's a "popular" topic. APOPS aims to (and does!) liase wordwide with clinicians/surgeons/doctors in spreading much needed awareness towards advances in diagnosis and treatment. The founder (a sufferer herself) works tirelessly with organisations yet there's still a way to go!

Would you be able to ask members yourself if they'd like a poll? Only I worry that not many will see "my" post. Perchance it will have more gravitas if it came from HQ etc? wink

Thanks again

Bloodyhellfire Sat 14-Oct-17 11:09:47

This definitely needs to be highlighted. So many women do not know anything about this and it is life changing.

dramaqueen Sat 14-Oct-17 13:22:08

Agree, APOPs is fantastic and I have gained so much from it. This definitely needs talking about.

Mary0963 Sat 14-Oct-17 17:14:41

I definitely agree with the sentiments above, pelvic organ prolapse needs to be discussed and you have a wonderful platform to spread awareness! 50% of women will experience POP (many of them are newly post-partum moms!!), yet MOST women have NEVER heard of it! That is absurd. The condition is shroud in silence because the symptoms are often difficult to talk about…but I can tell you…the symptoms are very difficult to live with. Would be awesome if MN could help raise awareness. Sherrie Palm wrote a book called Pelvic Organ Prolapse: The Silent Epidemic 3rd edition. This is an outstanding, comprehensive book on navigating a personal and complicated condition. I wish I had had this book decades ago when I first had symptoms. My POP progressed (as is the case for many women) to the point where I have had 2 surgeries, still have rectocele. I can no longer run, do triathlons, play tennis, and I had to change positions at work. POP took a lot from me and that may not have been the case if I had just had some knowledge...especially post-partum cautions!! Sherrie is the founder of Association for Pelvic Organ Prolapse Support (APOPS), a 501(c)(3) non-profit and has worked tirelessly to spread awareness, and has presented at many clinician based conferences and women’s event. Would be terrific to see MN invite her to participate in a Webchat! More on Sherrie and POP can be found at the APOPS website: www.pelvicorganprolapsesupport.org

smellsofelderberries Sun 15-Oct-17 09:15:14

Definitely in support of this. I was 5 weeks postpartum with my first baby at the age of 30 when I discovered my prolapse. I had the 'perfect' birth too- easy, call water birth of an average sized baby. Turns out my prolapse is because of something called levator avulsion- my main pelvic floor muscles were torn off my pelvis when my daughter crowned. It's a very common injury to some degree and it is never discussed in childbirth classes. Some research shows that up to 50% of forceps deliveries will inflict some level of this sort of injury on women.
Women need to be informed of the very real risks to their pelvic floor during childbirth. Prolapse is a debilitating condition, both physically and emotionally.

JANKAT Mon 16-Oct-17 07:10:04

Definitely support this. I've just been diagnosed & it's all so confusing & scary !

Oncewaswho Mon 16-Oct-17 07:19:33

Adding my support. The women on the "any old prolapse" threads here got me through a very difficult time several years ago and I joined the APOPS FB group around the same time, it is an amazing organisation.

colouringinagain Mon 16-Oct-17 20:29:41

I found out I had two prolapses a year ago. Things had started to feel different in my vulval area, more bulky esp after having done trampolining for a few weeks.

Went to gp who diagnosed cystocele (bladder prolapse) and rectocele (prolapsed rectum). As I'm premenopausal it's v likely they will worsen post menopause. I can't run any more (which I really enjoyed), can't trampoline, shouldn't jump up and down when I dance. Mustn't get constipated as straining makes them worse.

Read lots of the fab any old prolapse threads and found Apops. So helpful. I got better informed and found that

- some studies estimate as many as 40% of post menopausal women have a prolapse.

- That my dds forceps delivery mean I was hugely likely to experience prolapse - no-one mentioned this to me when encouraging my vaginal delivery.

- in France all women have individual physio post birth which massively reduces prolapse rates.

This diagnosis has had a big impact on me. I can't play football with ds or badminton with my dd any more. I feel disabled, but it's invisible and not talked about.

And the reality is it will almost certainly get worse and I could end up like many women whose prolapses become external causing a lot of pain, discomfort and reduced ability to exercise.

Surgical treatment using mesh is now triggering lawsuits as the rates and severity of complications starts to emerge. More effective, less invasive treatment is needed.

I've suffered with depression in the past, which running helped. Prolapse means I can't any more which affects both my mental health and my physical health - like cardiovascular health, I've gained some weight which also makes prolapse worse.

I'm not now fearful that any sudden jump or run will make everything fall out, but it took me six months to get to that point.

Specialist physio does help. I swim and walk.

Mumsnet I would love you campaign on this.

Prolapse is sooooooo common, and has significant negative impact on many sufferers' mental and physical health.

In my opinion a regular prolapse assessment should be standard for women with children.

Individual physio after vaginal delivery as good practice, mandatory after instrumental delivery.

More public awareness, less embarrassment and more support please.

Thank you.

Sofabitch Tue 17-Oct-17 06:51:57

It seems to be a hidden risk to childbirth that just isnt discussed enough.

I have a problems that I am too scared to get treated. As the mesh scandle is petrifying.

TheMasterBaker Tue 17-Oct-17 15:11:13

Yes please, another vote here, I have a friend who is dealing with this. It's something that should be discussed more.

ItsAllGoingToBeFine Tue 17-Oct-17 15:15:21

Another vote here.

It happens to so many women, but yet so many are blissfully unaware of existence until it happens to them. Plus there is a vast amount of conflicting information out there.

DenPerry Tue 17-Oct-17 15:24:03

This is one of the reasons I had sections. Women need to be informed of ALL risks of childbirth and them be able to choose their method of delivery.

BowTiesAreCool1 Tue 17-Oct-17 16:03:12

I think this a great idea!

Toadling Tue 17-Oct-17 16:17:08

I was blissfully unaware of POP until a friend was diagnosed. In my view, awareness and information can only be a good thing.

hingedspeculum Tue 17-Oct-17 16:47:21

In full support of a webchat.

I first started getting continence issues when I was 18, it was misdiagnosed as Crohn's disease and later IBS, but for ten years I went backwards and forwards to specialists, never really being take seriously ("Oh women's bodies can be a bit like this, especially when you are young", "Oh you're vegetarian, well that's the reason then!").

Eventually, I was taken seriously and investigated again, to find I had multi-compartment prolapses and had no other option but repair surgeries that I had performed earlier this year. I was told that they would eventually fail, that they'll need to be done again and will only have a finite amount of times that they can be repeated. I was told that I will never be discharged from my colorectal and uro-gynaecological surgeons.

Whilst of course the vast majority of women that suffer this way do so after traumatic deliveries, I have never been pregnant and now as a result of the extent of surgery I required, I never will. It's a misnomer that this doesn't happen to young, nulliparous women (I'm 28), but I am certainly not the only woman that has suffered like this.

brickiemum2 Tue 17-Oct-17 18:01:54

In support too as a young family member has suffered post childbirth.

SomewhereOver Tue 17-Oct-17 19:14:47

I would also fully support a webchat and think that this cause is absolutely something that MN should get behind. It is so, so common but underdiagnosed and hard to get the right support.

I suffered for 4 years after a forceps delivery, despite seeing my GP and being examined after saying something wasn’t right. She reassured me that all was fine, and it’s only after having another baby that my fab new GP also examined me and referred me to a specialist physio.

My case is mild, and I dread to think what it must be like to live with a more severe case.

I’m a HV so in an ideal position to discuss this with women postnatally but have never (neither have my colleagues) had any training in it.

BeyondNoone Tue 17-Oct-17 19:19:38

Another supporter. If it wasn't for mn I might never have known that my problems weren't "normal" following childbirth (as I was helpfully told by one gynae registrar hmm - I got a second opinion and then a referral for a repair op).

Dabitdontrubit Tue 17-Oct-17 20:54:36

Another supporter here, I feel woefully ignorant of the subject & awareness is very much needed in the general MN population.

I'd never heard of it, or how utterly awful it is until a friend spoke about it honestly and openly, and I felt woefully inadequate in my knowledge.

Shakey15000 Tue 17-Oct-17 21:28:19

Thank you so much for support on this ladies. I'm so sorry for those of you who are suffering and, especially those who have been misinformed sad angry

I wasn't kidding when I said I'd never heard of it. I had (unwittingly) felt a "bulginess" with mine and it wasn't until I completely (TMI) wet myself on holiday and had to wrap DH's shirt (!) around my waist to walk back to the hotel, that I went to the GP. Cue lots of to-ing and fro-ing until (after doing a LOT of digging) I was referred to the correct person.

Lots of people aren't aware that it's a urogynaecologist as opposed to a gynaecologist, that they need to see. You could have knocked me down with a feather when, after an MRI, he showed how (at that time) my walls had collapsed and both bladder and bowel had prolapsed. Then followed research into the many treatment options.

I think also, it's completely underestimated just how much of a game changer this is.

The tiredness and uncomfortableness.
The impact on sex
The sheer panic of having to find a toilet, and quick.
The secondary symptoms like unbelievable backache shock
The constant dragging/bulging feeling in the nethers.
The big decisions to be made ref surgery? Physio? Pessary? All of them?

Etc, etc.

Thanks again to those who have supported the idea of a webchat smile

colouringinagain Tue 17-Oct-17 21:39:24

It's also another classic example of the gender bias. Many women have been told by GPs that it's just what happens after a certain age, you have to get on with it.

In my mind the fictional male equivalent would be if a man walked into a GP and said that his penis is hanging by a thread -
Somehow I'd suspect he'd get urgent treatment. confusedangry

DancingLedge Tue 17-Oct-17 21:41:21

Currently huge " unspoken" area - more publicity and info the better.

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