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What They Don’t Tell You!: A Patient’s Story

16 January, 2014

The box of tissues is always close by in my treatment room.

There’s often tears of sadness- a loss of a favourite exercise that’s not ‘pelvic floor safe’ and therefore has to be dropped from the daily routine.

There’s often tears due to high anxiety when the diagnosis of prolapse is made – damage to my vagina? Can it recover to pre-pregnancy state? What will my husband think?

But this patient story is where there are tears of sadness, anxiety, but mostly anger – read the story Robyn has written for me and share the pain she still suffers so many years down the track.

 “ Pelvic floor problems are an ‘old’ woman’s problem, right?

How wrong was I to think this? I am a 37 year old mother of two beautiful girls (eight and five). I have cystocoele (anterior or front wall prolapse) and bilateral levator avulsion. I never thought that I would be dealing with this at my age. It was something that I would be dealing with in my sixties. No one talks about this. It is very much taboo. I will definitely be discussing this with my girls not to scare them, but to make them aware that this can happen.

Finding out that I had this was just shattering.

I had no idea that your muscles can be ripped off the bone in the pelvis and that it is more common than you think.

I feel very angry that I wasn’t told of this throughout my ante-natal care. If only I was told that this was a risk, then maybe I would have chosen to have my babies via a caesarean.

I would have been able to weigh up the risk and maybe I would have still had them naturally, but that would have been my decision. It would have been an educated decision and it’s cruel that we are lead to believe natural is best, but they never discuss the negative impact on your body. If they did, maybe we would be able to keep a better eye on our bodies and watch for signs and seek help earlier or better prepare our bodies for what is ahead.

I constantly worry whether I am doing enough to keep my prolapse stable.

I constantly worry about the impact on sexual function, urinary function and what does the future install for me.

I live in hope that stem cell research will be able to make me whole again. But will I be lucky enough… for now I have to work very hard to not let this take over my life.

I am very thankful that I have found health professionals who listen to my concerns, understand how I feel and educate about the correct exercises and strategies I can continue to self-manage this distressing condition. I can go back home with confidence that I’m doing everything I can, although I wish I didn’t have this problem.

Robyn lives deep in rural Queensland. I am sure this adds to the isolation (due to distance from her health professionals she is now seeing in Brisbane) that she may experience at times. Robyn sought lots of advice from quite a few health practitioners over the last five years since the birth of her second child. She has been diligent with following their instructions. And yet the comprehension about what Levator Avulsion means was something that she only realized after her first consultation in Brisbane. As Robyn has now realized, prolapse and other pelvic floor issues are not age related. They are very related to pregnancy and childbirth and so you could be only twenty, have had a baby and have incontinence and/or prolapse.

Anger is an emotion which many women experience on hearing about the severity of their birth damage. They all wish they had known such a thing could happen. And as Robyn said, they still may choose a vaginal delivery but it would be an informed decision based on knowledge of risk, it would be their decision.

What is important however, is to move on from the draining effects of anger, sadness and anxiety and use that energy in living life in a positive and happy way whilst still managing your condition well. Treatment strategies include: pelvic floor muscle training; bracing with increased intra-abdominal pressure; changing activities and movements to being pelvic floor safe; plus important things such as mindfulness, relaxation strategies and if necessary, seeing a psychologist to come to terms with overpowering feelings such as anger and anxiety. Robyn works very hard with living a normal life back at home- but it’s always good to know it’s safe to have a good cry in my office. It’s cathartic, it relieves the pressure (that builds as you are confronted daily with these changes) – as long as the sadness doesn’t overwhelm you.

Robyn is continuing on her journey. She has been fitted with a pessary (rigid as opposed to the flexible ones that can be managed by the woman) to help hold her prolapse up but it is early days. She also works on focusing on her girls, her husband and on trying to enjoy life while she continues with her management plan.

So in this year, 2014, when the Continence Foundation of Australia has designated it the Year of Pregnancy and Maternal Welfare, let’s spread the word about optimal maternal outcomes, preventative strategies for pelvic floor dysfunction and let’s get this conversation going!

From → Childbirth

2 Comments
  1. Jenni permalink

    Robyn, your story brought tears to my eyes as I know your pain all too well… I have levator avulsion as well – the damage is partial unilateral and a mild prolapse. I have two children, 4 years old and 18 months.

    My first birth was failed vacuum then forceps delivery and I am very certain the avulsion occurred during this birth. At first, upon reflecting on my birth, I was furious and thinking why wasn’t I told about the risks to ME (as I remember the discussion about risks to baby) when my obstetrician pulled out the GIANT TONGS and thinking perhaps I would have been better off having a c-section at that point. However after speaking with both my obstetrician and a midwife about my birth, I have a clearer understanding of the challenges at play, risks associated with c-sections and that my obstetrician did indeed make the best call in the situation. I’m still quite bitter that I wasn’t referred to a Pelvic Floor Physiotherapist after the birth of my first son though – forceps are pretty brutal! Sue’s advice at that point would have helped a lot!

    I understand the anger, the bitterness, the blame, the denial, the weirdness when you tell others about the condition, the worry that things will get worse, the loss of freedom, the disconnect from your kids because your head is in a different space, the isolation of not knowing anyone else with this condition and the search for a better emotion through food (namely hazelnut chocolate). None of this helps….

    I know what it is like to feel perched on the edge of a hole with the sides caving in, thinking can I make it to the other side?… Thankfully some wonderful people in my life sent me some lifelines from the other side – it’s NOT your fault and it doesn’t matter how long it takes to accept the ‘new normal’.

    I would love to have my prebaby intact pelvic floor back, but it’s not going to happen (well not in the near future anyways – but we do have HOPE ladies with stem cell technology).

    I know no lady would write YES PLEASE for forceps on their birth plan – it’s an emergency situation, the doctor has to get baby out. It is the unpredictable nature of childbirth.

    I know ultimately however you get baby out has risks – vaginal delivery has risks and as does c-sections. And in our modern world we tend to forget that without good medical care many many women die in childbirth. So we are so fortunate that many women live on to see their babies grow into young adults.

    As a mum I know I have sacrificed a lot for my children – my freedom, elements of my social life, the ability to have an unbroken adult conversation, a nice long sleep in, a slow paced calm day and some ways my career. So what’s another one to the list… Robyn, another way of thinking about it is that we sacrificed our pelvic floors to allow our beautiful children to enter the world.

    I’m thankful to have survived childbirth, I’m thankful to have a wonderful supportive husband, I’m so thankful that I have an inspirational boss that always finds the light even when all seems dark, I’m incredibly grateful that I have an energetic 4 year old and cheeky 18 month old to keep me on my toes, even though they didn’t come without sacrifice.

    I know its hard and takes courage, but Robyn I encourage you to try to see the light and find gratitude for the wonderful things you do have in your life. It just takes time and that’s ok.

    I would love to see all women checked for levator avulsion after a vaginal delivery and maybe the Year of Pregnancy and Maternal Welfare may help to bring more awareness to levator avulsion but I know these changes just take time 🙂

    Jenni

  2. I really relate to Robyn’s story. I too fell for the idea, presented in my birth classes, that birth is natural and that my body would “know what to do”. Unfortunately it didn’t, and at the age of 28 I am dealing with a level 2 cystocele, the effects of a bad 3rd degree tear, and urge incontinence. I too overwhelmingly feel that I was denied the opportunity to give informed consent, as I was told only about the negative impacts of C-section, and not of vaginal birth. I went to two birth classes, read three of the most popular birth books, and the first time I heard about prolapse was when my GP was telling me I had one.

    To try and make something positive out of my experience, I have started a website to raise awareness of prolapse, and to support women like me with the condition. It’s called Prolapse Support, and can be found here: http://prolapse-support.blogspot.com.au/

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