PATIENT EXPERIENCES

Faecal incontinence is very poorly understood in wider society and often only perceived to be associated with the aging process. I have experienced faecal incontinence for the last 2 decades, due to the aftermath of bowel surgery. in spite of being otherwise physically fit and healthy.

This has caused me severe distress and inconvenience and compromised my sense of self, socialisation and employability. It places a routine burden on me in terms of purchasing and wearing protective underwear and makes intimacy awkward.

The cause of my incontinence was damage during childbirth, I was in hospital being monitored as there was concern about the size of my baby.  I’m only 4ft 11ins tall and have a small pelvis. I went into labour at 37 weeks, I was told they were only Braxton Hicks contractions and I wasn’t in labour,  In fact I was in labour, and only moved from the toilet 10 mins from giving birth. The baby was stuck and they used forceps without pain relief to pull my daughter out. So from then (46 years ago) I had awful pain in my pelvis and back and perineum. one side of my anus has been numb since then. Incontinence has worsened as I have got older (I’m now 75).

Life has been stressful having had episodes of incontinence, in supermarkets, in bed with my husband, twice while driving, in front of friends, grandchildren, out walking, on a train. So many other times I’ve lost count. My confidence about going out has gone, I feel devastated, angry, dirty, embarrassed. I’ve sat and cried. I’ve begged for help. It happens without warning , so can happen anytime at all. Even happens whilst asleep. I had a change of clothes and bucket and wipes always in the car. Never have time to get to a toilet.

Only found out after 43 years that my Pudendal nerves have been affected by the forceps, and severe delay in telling my brain I need the loo.

Before that I was labelled by Drs that I was a rather silly neurotic woman. Last year I had an SNS which has helped a good bit, still not brilliant though.

Amelie could be a game changer, incontinence has ruined my life, I’ve lost so so much, my career, chance of any more children, financially been challenging. It’s eaten into every aspect of my life.

Life could have been so different. I’m struggling to come to terms with this lost life.

My name is Natalia, and I’m 42 years old. In July 2015 I gave birth to my son. Due to a series of errors, I ended up having an assisted delivery with a forced episiotomy and suffered a severe haemorrhage. Due to these events, my post-partum recovery was long and difficult. I suffered with anaemia, and my episiotomy site wasn’t healing as well or as fast as it should. I also suffered significant psychological trauma.

During the first thirteen months after the labour, I was constantly very unwell. I was hospitalised twice, first with myocarditis, then with inflammatory pelvic disease, and between these I had a variety of viral and bacterial infections. My toilet visits were frequent, with some accidents, but I attributed my diarrhoea to an irritable bowel syndrome diagnosis I received in my early twenties. All these adverse life events, combined with taking care of a baby and then a small child, meant that I tried just to survive and hoped that all would get better down the line.

Around 5 months after giving birth, I felt something near my anus, so I was referred to see some type of specialist. He diagnosed me with an external haemorrhoid. Although I mentioned that my site wasn’t healing as well, he didn’t refer me because we were going to move out of the area in the next month or so. I was prescribed some cream and sent away.

Then, in 2017, I went back to work, which luckily was only a 2 minutes’ walk away from home, and as I had no social life at all, I just tried to get on with life despite my worsening symptoms.

At the end of 2018, I saw a GP at my local practice. It was a woman, and after I described my constant loose or watery bowel movements, described my symptoms, and was examined, she didn’t really believe I only had IBS, to the extent that she warned me it was very possible I could have Crohn’s disease. As I always have had serious bowel issues, I also resigned myself to the idea. The GP was in shock when my result came back negative. She then decided to refer me to a specialist clinic helping women following a birth injury. I was initially seen in June/July 2019, examined, and sent for a lot of tests. These examinations and tests confirmed that I not only have a bowel mucosa prolapse that was misdiagnosed as piles, but also that my sphincter muscles are seriously damaged.

I was prescribed loperamide and physio. Then, unfortunately, COVID-19 happened and everything got badly delayed. My prolapse was getting worse and started bleeding, so my other symptoms were getting worse. Finally, after a phone consultation with a surgeon, I had prolapse surgery in September 2021. I continued trying conservative treatments for my incontinence, but it was getting worse. In 2024, I was accepted for a trial of a Medtronic Sacral Nerve neuromodulating implant and had the first surgery in October 2024. Then, following a review of the outcomes, I qualified for a permanent implant and had that surgery in March 2025. It was a life-changing event because I had not only a reduction in leaking and accidents, but it also sort of regulated my bowel, decreasing the amount of daily toilet trips and introducing more consistency over my bowel movement times. It has not treated my problem, and I still have accidents, but it decreased the prevalence.

Before the implant, I planned my life around toilet access, was constantly stressed with simple and even short trips taking my son to school and speaking to friends afterwards. I felt dirty and never shared my issue, as I saw it as a taboo subject. You know women often joke on TV, and sometimes in real life, about peeing when they laugh, but there is never any mention of faecal incontinence. Mentally, I also felt like damaged goods and that I couldn’t share it with my spouse because he would be disgusted by me. Also, only in 2025 was I diagnosed with mental health problems caused by trauma, and I’m now on a lengthy waiting list for in-person therapy. Even longer, I need to have a female counsellor due to the causes of my issues.

Only very late did I recognise that I have a form of hidden disability, and I should be asking for things like reasonable adjustments for stressful events like an interview because anxiety and stress make me run to the toilet there and then, and the SNS isn’t able to stop the diarrhoea.

Also, needing to ask for quick access to a toilet in places like some shops that don’t have a customer toilet is degrading, as you need to ask staff for access to a staff toilet and explain why, or when I’m not a customer of a store or restaurant where toilet access is reserved for customers.

Research like AMELIE means that there’s still hope for those who suffer with faecal incontinence that we can receive adequate and accessible treatment. I was lucky to get my SNS but waited many years until it was even mentioned.

I’m still a relatively young woman. I’m still to go through the perimenopause and the menopause. I know that this, plus age, will only make my incontinence worse.

In the light of recent reports on maternity services negligence, there should be more emphasis on changing the system to allow for comprehensive and quick access to available treatments, including treating the mental health side of things.