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Global Pelvic Health Facebook Group Tackles Prolapse Rate!! Plus Amy Dawes’ Story

29 July, 2016

woman talking thru a megaphone

In a few weeks I will be presenting again to the general public on prolapse and every time I do one of these talks and I put that stat in and “50% of women over the age of 50 who have had a vaginal delivery will develop prolapse it still really impacts on me. Because when you think about the population of Australia 24 million- say 50% are female. And from the Bureau of Statistics, in 2011, 297,126 women gave birth to 301,810 babies in Australia. Onset of labour was spontaneous for 54.8% of women giving birth. Most women (67.7%) had a vaginal birth and, of these, 82.1% did not involve the use of instruments.

So it translates to an enormous number of women!

(Some other stats from that year: overall, 32.3% of women gave birth by caesarean section in 2011, a 0.7% rise from 2010. The caesarean section rate among first-time mothers was 33.2% in 2011. Among women who had already given birth at least once, 28.8% had had a previous birth by caesarean section.)1.

Now does this 50% figure have to be an inevitability or is it that we are letting down the women of Australia (and the US, UK Iceland, Africa etc etc) because we health professionals (physios, GPs, Obs and Gynaes, Urogynaecologists) are not educating enough and making a compelling argument about simple lifestyle factors and the preventative role of the pelvic floor in pelvic organ prolapse management?

If we had an orchestrated public health campaign (such as the highly successful ones about smoking and wearing seatbelts) in Australia, about prevention of prolapse such as the points listed below, could these targets be reached?:

  • Pelvic floor muscle strengthening to maximise the potential of the muscles following a vaginal delivery.
  • Matching downward forces of coughing, sneezing, bending, sit to stand etc by engaging the pelvic floor muscles first- known as ‘the knack’
  • Good bowel management such as the correct postures and dynamics for defaecation and appropriate consistency of the stool (yes bowels bring down prolapse!!)
  • Extol the virtues of more routine use of pessaries (to the medical fraternity) to allow women to be able relax to exercise and lift their children when they are toddlers
  • And another big one pelvic floor safe exercising.

On pelvic floor safe exercising– there is a lot of detailed research going on around the world about activities that raise intra-abdominal pressure, with debate as to whether some of the restrictions that physios like me talk about, are over-zealous. Restricting women from doing certain exercises needs to come with a caveat that it would be wise to have your risk assessed by a Continence and Women’s Health Physio depending on the strength of your muscles, the stretch to your ligaments or fascia or the damage to your pelvic floor such as levator avulsion, nerve damage or prolapse as a result of the vaginal delivery. If women were absolutely encouraged to exercise through their lifetime but in a safer way to minimise risk of further prolapse, to be fitted with a pessary to facilitate good support while exercising and to have regular yearly checks to monitor the state of the pelvic floor then I am sure those statistics could be lowered! I can tell you from years of experience that women feel angry when they realise the activities they have undertaken without any warning from their trusted instructor, have worsened their prolapse.

Now recently a number of us Women’s and Men’s Health Physiotherapists – otherwise known as #pelvicmafia – formed a new group called the Global Pelvic Health Facebook Group – driven by a desire to collaborate in a global way to tackle this worldwide phenomena of pelvic floor dysfunction – a silent yet manifestly common problem worldwide.

The goals of the group are to professionally challenge each other to improve outcomes for patients worldwide by:

  • sharing patient case studies;
  • distributing pertinent research articles;
  • highlighting clinical pearls and even
  • adding the odd artistic contribution such as seen in the photos below (yes we are a cultural lot!)

great-wall-of-vagina3-550x365

Great Wall of Vaginas MONA Gallery, Hobart

I think we as a new group could set targets like the scientists do with global warming- what if we set an aim to reduce this prolapse rate through public education by 10% in Australia by 2020; by 20% by 2025 and by 25% by 2030. How cool would that be if we as a new group actually got out there with megaphones (metaphorically) and literally blasted every media outlet with this message that simple manageable things like the knack; good bowel management and safely exercising (if it is warranted by proper assessment by a Women’s Health physiotherapists looking at objective data like is there a Levator Avulsion?, what is the GH+PB (genital hiatus plus perineal body length) measurement – does it fall into the risk dimensions for prolapse?; how much perineal descent is present on a curl up, cough with and without the knack?).

If these things were properly assessed and a judgement made and guidelines given to the women, the inevitable MAY NOT HAVE TO HAPPEN!!!!

Now another reason this may not have to happen is highlighted in this case presentation by a woman who has been touched in a very personal way by prolapse. Her name is Amy Dawes and she has given permission to give her real name as she is being very brave and ‘coming out’ about her issues. But as she says – “I don’t really feel brave, I feel like it’s my duty to be a voice”. This young women is extremely articulate and in fact is presenting her story at a medical conference soon, which is incredible, because the health professionals attending will be able to see the pain and suffering that happens with birth trauma and prolapse which raises it beyond just the ‘feeling of a bulge’ to how it impacts on all aspects of a women’s life. All too often, after health professionals see patient after patient, they get almost desensitized to the impact of these common occurrences and think women are being dramatic when they cry and stress about the changes to their once uncomplicated lives pre-vaginal birth (regarding exercise, controlling wees and bowel motions) when there is significant damage.

Here is Amy’s story:

In the lead up to the birth of my daughter in December 2013, I had become set on a natural birth, I wanted my daughter to get those important antibodies from the birth canal and after doing my calm birth course I was all set to breathe her out.

Except nothing can really prepare you for the pain. After 9 hours of laboring, vomiting and scratching the paint off our bathroom walls, the midwife on duty at the hospital finally said we could come in. I was desperate for the epidural I said I’d never get and 2 hours later relief was mine. When I was 10cms dilated we went to the next stage, an hour and a half of pushing and still no baby, that’s when we realised our girl wasn’t going to come into the world without help.

It came to an emergency decision between a caesarean section or high forceps, I wasn’t told the potential risks that lie with a forceps delivery and as my pelvic floor muscle was torn off the bone and my perineum cut, then torn (leaving me with a 3rd degree tear), they sent my new baby and partner out the room and ordered 2 units of blood, I lay there shaking and wondering whether I would die. The subsequent days where a morphine-induced blur until the unexpected afterbirth pains that came at night left me in agony, with every cramp I urinated in my bed, with no clue to what was happening- I just lay in a bed of urine. I was tied to a catheter for 5 days, I didn’t change a nappy till my daughter was a week old!

I could barely walk for around 4 weeks, much of that time was spent in bed, crying and wondering what I had done – my body now felt alien to me. However it wasn’t till my daughter was about 16 months old did I really feel the impact of the birth trauma.

Bio-feedback improved my faecal incontinence although without management I still have the odd accident. My biggest question then was ‘when would I be able to exercise like I used to?’ Exercise was a massive part of my life pre-baby – it was a huge part of my identity.

The obstetrician I was seeing said the physio (who had advised pelvic floor safe exercises) was just playing it a safe and that if I did prolapse then I could just get surgery after I’ve finished having kids.

I eased myself gently back into training and one day after a short run, I just knew something wasn’t right, a heavy feeling which I now know was as a prolapse. After examination from my physiotherapist, I was told that a bilateral levator avulsion was the cause and that’s when the bottom (literally) dropped from my world.

Not only would I no longer be doing the sports I loved but every day simple tasks that I once took for granted, like being able to lift up and cuddle my toddler, run, jump, sneeze, cough or perform basic functional movements like squatting and bending, became a constant source of worry – ‘have I made it worse’?

Yet I’m a mother running after a child all day long, how could I possibly avoid these tasks?

I felt completely alone, literally like I’m the only one with this and all at once overwhelmed by my bodies limitations. Here’s the thing with pelvic floor dysfunction, because you can’t see it, no one knows it’s there, so no one really knows how much you are suffering, yet my postpartum physiotherapist likened my injuries to that of being in a car crash- and some people thought I was lucky for not having a caesarean!

When I found out about my avulsion I felt like my quality of life was completely altered I found myself filled with anger, frustration, sadness and anxiety. I would revisit questions that plagued my mind -How can someone do that to my body? – damaging it beyond repair without informing me of the risks involved with forceps deliveries, LONG before I was in the delivery room.

When planning for a baby we certainly didn’t budget for the thousands upon thousands of dollars spent on doctors, physiotherapy, counselling and psychiatry.

A year after my initial diagnosis, I had a 3D/4D Ultrasound and I was able to visually review my bi-lateral avulsion and Stage 2 bladder and bowel prolapse. I have made the decision not to pursue surgery as it’s my understanding that prolapse surgery has a 30% risk of failure, however with a bi-lateral avulsion that risk increases to 80%. At the age of 35 I am not prepared to spend my time in and out of hospital. What concerns me is that surgery was viewed as the answer to my problems, where I feel that doing everything to avoid pelvic organ prolapse is more important than thinking surgery is the solution when it happens.

I never thought I would be able to make peace with what happened that December day, but I am thankful to be here now as a voice for so many who choose to suffer in silence. Pelvic floor dysfunction has serious power over everyday life, affecting all areas of your world and the people around you. Whilst I still think natural births are a beautiful thing, my wish is for women to have an opportunity to be provided informed consent about the risks involved with childbirth, especially forceps, so decisions don’t need to be made in emergency situations, without proper information, without informed consent.

Thank you Amy for your wonderful personal account and being brave enough to come out about it. With stories like these perhaps our global health target will be achievable as we spread the word about prevention to the next generation of mums and health professionals.

In response to Amy’s articles I have had a wonderful comment which deserves to be included in the article. It is from Liz Skinner a researcher and midwife who works with Professor Peter Dietz who has published around 200 articles on Levator Avulsion and is leading the conversation about birth choices for women.

Thank you so much Sue and Amy for this invaluable information and personal experience. I am at present working tirelessly with Prof Hans Peter Dietz and his team in Sydney to change clinical outcomes for women.
More women are bravely coming forward after forceps deliveries with these terrible injuries and despite the embarrassment they are realizing that change is imperative.

Childbirth is universally seen as a predictable and positive life experience despite women’s claims of pelvic organ prolapse, dyspareunia (pain having sex) and faecal and urinary incontinence after vaginal birth. Major pelvic floor dysfunction, often due to forceps use in labour, can affect 20-30% of primiparae. Such damage is rarely considered as compromising postnatal psychological health.

Traumatic vaginal birth, followed by the embarrassment and isolation that results from pelvic floor and anal injury, requires investigation as a major contributor to psychological problems post-partum. Such injuries are commonly dismissed as ‘trivial women’s issues’ and subsequent psychological symptoms confused with tiredness, pre-existing marital disharmony, postnatal depression (PND) or other psychosocial factors and treatment becomes inadequate. Unfortunately the literature on this topic is sparse and almost entirely ignores obstetric history.

Maternity services worldwide do not recognize pelvic floor dysfunction as a cause of mental health dysfunction regarding morbidities that impact women’s sexuality or lifestyle.

Findings in a study that examined the effects of vaginal birth trauma, mostly after forceps deliveries, noted postnatal mothers were not informed by clinicians that their genital area would be so damaged and many stated that ‘down there’ felt totally foreign, disgusting and changed beyond recognition. These women suffered from dissociation, avoidance, numbness, flashbacks, severe anxiety, panic attacks and nightmares from a traumatic delivery, sometimes years later, and often during sexual relations. Furthermore, decreased libido, dyspareunia, lack of intimacy and marital problems exacerbated women’s psychological consequences.

A great need exists to learn how to prevent women from sustaining somatic and psychological injuries by acknowledging their concerns and providing accurate diagnostic and therapeutic services.

Great words Liz and let’s keep these conversations building so outcomes can be changed!

#Globalpelvichealth #pelvicmafia #reduceprolapseincidence #spreadtheword #breakthesilence #pessariesarentjustforoldwomen

  1. http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Chapter3202008
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6 Comments
  1. Belinda permalink

    Thank you so much for this article.
    I am in my sixties and was damaged by a forceps delivery when I was twenty four. I have had many surgeries and am in constant pain. People find it too embarrassing to acknowledge and refer to my back pain even when I correct them. As far as my medical insurance are concerned this doesn’t feature in their codes so is an exclusion.

  2. Jane permalink

    Thank you for this article – very informative. Sue where and when are you presenting to the general public??

    • It is Thursday 18/8 at Robinson Gardens
      I will try and get the details- it’s on my Facebook page but if you look on the CFA site it has all the education forums around Australia that are free sponsored by CFA

  3. Clare permalink

    My life changed too at the age of 36 delivering my son via Keilands forceps.
    I had faecal incontinence and a haematomma ( the size of an apple) on my perineum and couldn’t sit down for many weeks. The pain of standing with this throbbing weight was at times unbearable.
    I too,have not had repair surgery as the odds of success are too poor and so have a pessary ring fitted every 3 months. This isn’t an ideal solution but the only option available to carry out a regular existence and any of my sporting past is a memory.
    I’m happy,smiling on the outside and grateful for my son who bears no ill effect from that day but mourn the loss of me,9 years ago. No one told me about the forceps secret :((((

  4. Very informative article you have shared. This is a life changes article for so many people. Can you please share Facebook group link?

    Thanks
    Ray

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