{"id":31844,"date":"2026-07-14T15:02:40","date_gmt":"2026-07-14T15:02:40","guid":{"rendered":"https:\/\/amelie-project.eu\/?page_id=31844"},"modified":"2026-07-14T15:42:23","modified_gmt":"2026-07-14T15:42:23","slug":"temoignages-de-patients","status":"publish","type":"page","link":"https:\/\/amelie-project.eu\/fr\/temoignages-de-patients\/","title":{"rendered":"T\u00e9moignages de patients"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; disabled_on=&#8221;off|off|off&#8221; admin_label=&#8221;Hero section&#8221; _builder_version=&#8221;4.16&#8243; background_image=&#8221;https:\/\/amelie-project.eu\/wp-content\/uploads\/2020\/10\/AMELIEHEADERBACKGOUND-01-scaled.jpg&#8221; background_position=&#8221;center_left&#8221; custom_margin=&#8221;|||&#8221; custom_padding=&#8221;7%||7%||true|false&#8221; custom_padding_tablet=&#8221;15%||15%||true|false&#8221; custom_padding_phone=&#8221;&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; width=&#8221;100%&#8221; module_alignment=&#8221;left&#8221; custom_padding=&#8221;|||4%|false|false&#8221; custom_padding_tablet=&#8221;|||5%|false|false&#8221; custom_padding_phone=&#8221;|||5.5%|false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][dsm_block_reveal_text block_reveal_text=&#8221;PATIENT EXPERIENCES&#8221; heading_html_tag=&#8221;h1&#8243; block_reveal_color=&#8221;#0e94f9&#8243; block_reveal_delay=&#8221;0&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;AMELIE||||||||&#8221; header_text_color=&#8221;#0e94f9&#8243; header_font_size=&#8221;3vw&#8221; custom_padding=&#8221;||||false|false&#8221; custom_padding_tablet=&#8221;||||false|false&#8221; custom_padding_phone=&#8221;||||false|false&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; header_font_size_tablet=&#8221;5vw&#8221; header_font_size_phone=&#8221;6vw&#8221; header_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/dsm_block_reveal_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; min_height=&#8221;165.4px&#8221; custom_padding=&#8221;||0px|||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><span data-olk-copy-source=\"MessageBody\">The stories below have been generously shared by people with lived experience of faecal incontinence. They highlight the challenges many individuals face, as well as the hope that the AMELIE project can help bring meaningful change in the future.<\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; admin_label=&#8221;Collections&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;0px|0px|0px|0px|false|false&#8221; custom_padding_tablet=&#8221;50px||50px||true|false&#8221; custom_padding_phone=&#8221;&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row make_equal=&#8221;on&#8221; custom_padding_last_edited=&#8221;off|tablet&#8221; module_id=&#8221;faecal-incontinence-about-the-condition&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;|auto|19px|auto||&#8221; custom_margin_tablet=&#8221;||||false|false&#8221; custom_margin_phone=&#8221;&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; custom_padding=&#8221;0px||0px|&#8221; box_shadow_style=&#8221;preset3&#8243; box_shadow_vertical=&#8221;40px&#8221; box_shadow_blur=&#8221;50px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.1)&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;35deg&#8221; background_color_gradient_stops=&#8221;#6bc8ff 0%|#99afff 100%&#8221; background_color_gradient_start=&#8221;#6bc8ff&#8221; background_color_gradient_end=&#8221;#99afff&#8221; background_enable_image=&#8221;off&#8221; custom_padding=&#8221;5%|5%|5%|5%|true|false&#8221; custom_padding_tablet=&#8221;15%||15%||true|false&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;AMELIE||||||||&#8221; header_font=&#8221;Gotham kinda bold||||||||&#8221; header_text_color=&#8221;#000000&#8243; header_3_font=&#8221;Gotham kinda bold||||||||&#8221; header_3_text_color=&#8221;#000000&#8243; header_3_font_size=&#8221;28px&#8221; header_3_line_height=&#8221;1.5em&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; custom_margin=&#8221;||10px|&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Anonymous<\/h3>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;Gotham kinda bold||||||||&#8221; text_text_color=&#8221;#000000&#8243; text_font_size=&#8221;16px&#8221; text_line_height=&#8221;1.9em&#8221; header_font=&#8221;||||||||&#8221; header_2_font=&#8221;||||||||&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>I am 78. 47 years ago my first child was born, two weeks overdue. It was a very long, painful labour, back to back. The obstetrician on duty was not experienced and after 36 hours called for a registrar, leaving me in second stage labour with instructions not to push. Eventually my very large son was born by Keillands forceps. I had a huge episiotomy and was in enormous pain for over a year. No-one mentioned birth injury. The experience was very traumatic psychologically.<\/p>\n<p>In the 2010s I first experienced faecal incontinence. I saw a colorectal specialist who thought it was \u2018probably\u2019 caused by a birth injury. I had a proctogram and some general advice from a physiologist about position etc.\u00a0 Some years later, it became much worse.<\/p>\n<p>In 2024, after many investigations, I discovered for the first time I had tears in both sphincter muscles, a rectocele and a prolapsed bladder. I was fortunate to be referred to a specialist physio who gave me external electrical stimulation and many exercises. I understand the preferred treatment in the uk is SNS, which seems like a somewhat similar process, but inserted into the body. This has helped about the 50% amount you referred to in your podcast, for which I\u2019m very grateful.<\/p>\n<p>What upsets me so much is that young women are still, all these years later, suffering from the same injuries. Some of them are unable to go out, to work or have sex. Marriages have broken down, second children never born, careers had to be abandoned and whole lives limited to a huge extent. Hence my plea for more prevention, as well as treatment.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|tablet&#8221; admin_label=&#8221;Collections&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;0px|0px|0px|0px|false|false&#8221; custom_padding_tablet=&#8221;||50px||false|false&#8221; custom_padding_phone=&#8221;&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row make_equal=&#8221;on&#8221; module_id=&#8221;faecal-incontinence-and-regenerative-medicine&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; module_alignment=&#8221;center&#8221; min_height=&#8221;281.6px&#8221; custom_margin=&#8221;|auto|12px|auto||&#8221; custom_padding=&#8221;0px||0px|&#8221; box_shadow_style=&#8221;preset3&#8243; box_shadow_vertical=&#8221;40px&#8221; box_shadow_blur=&#8221;50px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.1)&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; admin_label=&#8221;Column&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;40px|40px|40px|40px&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221; custom_css_main_element_last_edited=&#8221;off|phone&#8221;][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;AMELIE||||||||&#8221; header_font=&#8221;Gotham kinda bold||||||||&#8221; header_text_color=&#8221;#000000&#8243; header_3_font=&#8221;Gotham kinda bold||||||||&#8221; header_3_text_color=&#8221;#000000&#8243; header_3_font_size=&#8221;28px&#8221; header_3_line_height=&#8221;1.5em&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; custom_margin=&#8221;||10px|&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Sarah (41 when first experienced faecal incontinence)<\/h3>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;Gotham kinda bold||||||||&#8221; text_text_color=&#8221;#000000&#8243; text_font_size=&#8221;16px&#8221; text_line_height=&#8221;1.9em&#8221; header_font=&#8221;||||||||&#8221; header_2_font=&#8221;||||||||&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"x_elementToProof\" data-olk-copy-source=\"MessageBody\">\n<p>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.<\/p>\n<p>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.<\/p>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|tablet&#8221; admin_label=&#8221;Collections&#8221; _builder_version=&#8221;4.16&#8243; min_height=&#8221;2224.9px&#8221; custom_padding=&#8221;0px|0px|0px|0px|false|false&#8221; custom_padding_tablet=&#8221;||100px||false|false&#8221; custom_padding_phone=&#8221;&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row make_equal=&#8221;on&#8221; module_id=&#8221;why-are-conventional-methods-not-working&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; module_alignment=&#8221;center&#8221; min_height=&#8221;675.9px&#8221; custom_margin=&#8221;19px|auto|18px|auto||&#8221; custom_padding=&#8221;0px||0px|||&#8221; box_shadow_style=&#8221;preset3&#8243; box_shadow_vertical=&#8221;40px&#8221; box_shadow_blur=&#8221;50px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.1)&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;35deg&#8221; background_color_gradient_stops=&#8221;#6bc8ff 0%|#99afff 100%&#8221; background_color_gradient_start=&#8221;#6bc8ff&#8221; background_color_gradient_end=&#8221;#99afff&#8221; background_enable_image=&#8221;off&#8221; custom_padding=&#8221;5%|5%|5%|5%|true|false&#8221; custom_padding_tablet=&#8221;15%||15%||true|false&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;AMELIE||||||||&#8221; header_font=&#8221;Gotham kinda bold||||||||&#8221; header_text_color=&#8221;#000000&#8243; header_3_font=&#8221;Gotham kinda bold||||||||&#8221; header_3_text_color=&#8221;#000000&#8243; header_3_font_size=&#8221;28px&#8221; header_3_line_height=&#8221;1.5em&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; custom_margin=&#8221;||10px|&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Heather (29 when first experienced faecal incontinence)<\/h3>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;Gotham kinda bold||||||||&#8221; text_text_color=&#8221;#000000&#8243; text_font_size=&#8221;16px&#8221; text_line_height=&#8221;1.9em&#8221; header_font=&#8221;||||||||&#8221; header_2_font=&#8221;||||||||&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"x_elementToProof\" data-olk-copy-source=\"MessageBody\">\n<p>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. \u00a0I\u2019m 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\u2019t in labour,\u00a0 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\u2019m now 75).<\/p>\n<p>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\u2019ve lost count. My confidence about going out has gone, I feel devastated, angry, dirty, embarrassed. I\u2019ve sat and cried. I\u2019ve 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.<\/p>\n<p>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.<\/p>\n<p>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.<\/p>\n<p>Amelie could be a game changer, incontinence has ruined my life, I\u2019ve lost so so much, my career, chance of any more children, financially been challenging. It\u2019s eaten into every aspect of my life.<\/p>\n<p>Life could have been so different. I\u2019m struggling to come to terms with this lost life.<\/p>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row make_equal=&#8221;on&#8221; module_id=&#8221;faecal-incontinence-and-regenerative-medicine&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; module_alignment=&#8221;center&#8221; min_height=&#8221;1454px&#8221; custom_margin=&#8221;-22px|auto|25px|auto||&#8221; custom_padding=&#8221;0px||0px|||&#8221; box_shadow_style=&#8221;preset3&#8243; box_shadow_vertical=&#8221;40px&#8221; box_shadow_blur=&#8221;50px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.1)&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; admin_label=&#8221;Column&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;40px|40px|40px|40px&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221; custom_css_main_element_last_edited=&#8221;off|phone&#8221;][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;AMELIE||||||||&#8221; header_font=&#8221;Gotham kinda bold||||||||&#8221; header_text_color=&#8221;#000000&#8243; header_3_font=&#8221;Gotham kinda bold||||||||&#8221; header_3_text_color=&#8221;#000000&#8243; header_3_font_size=&#8221;28px&#8221; header_3_line_height=&#8221;1.5em&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; custom_margin=&#8221;||10px|&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Natalia<\/h3>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.16&#8243; text_font=&#8221;Gotham kinda bold||||||||&#8221; text_text_color=&#8221;#000000&#8243; text_font_size=&#8221;16px&#8221; text_line_height=&#8221;1.9em&#8221; header_font=&#8221;||||||||&#8221; header_2_font=&#8221;||||||||&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"x_elementToProof\" data-olk-copy-source=\"MessageBody\">\n<p><span style=\"font-family: inherit; color: black;\">My name is Natalia, and I\u2019m 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\u2019t healing as well or as fast as it should. I also suffered significant psychological trauma.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">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.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">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\u2019t healing as well, he didn\u2019t 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.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">Then, in 2017, I went back to work, which luckily was only a 2 minutes\u2019 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.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">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\u2019t really believe I only had IBS, to the extent that she warned me it was very possible I could have Crohn\u2019s 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.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">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.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">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\u2019t 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\u2019m 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.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">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\u2019t able to stop the diarrhoea.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">Also, needing to ask for quick access to a toilet in places like some shops that don\u2019t have a customer toilet is degrading, as you need to ask staff for access to a staff toilet and explain why, or when I\u2019m not a customer of a store or restaurant where toilet access is reserved for customers.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">Research like AMELIE means that there\u2019s 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.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">I\u2019m still a relatively young woman. I\u2019m still to go through the perimenopause and the menopause. I know that this, plus age, will only make my incontinence worse.<o:p><\/o:p><\/span><\/p>\n<p><span style=\"font-family: inherit; color: black;\">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.<o:p><\/o:p><\/span><\/p>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;29px|||||&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p><div class=\"et_pb_module dsm_block_reveal_text dsm_block_reveal_text_0\">\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t<div class=\"et_pb_module_inner\">\n\t\t\t\t\t<div class=\"dsm_block_reveal_text_wrapper\" data-dsm-block-reveal-animation=\"lr\" data-dsm-block-reveal-color=\"#0e94f9\" data-dsm-block-reveal-delay=\"0\" data-dsm-block-reveal-viewport=\"80%\"><h1 class=\"dsm_block_reveal_text_header et_pb_module_header\">PATIENT EXPERIENCES<\/h1><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>The stories below have been generously shared by people with lived experience of faecal incontinence. They highlight the challenges many individuals face, as well as the hope that the AMELIE project can help bring meaningful change in the future.AnonymousI am 78. 47 years ago my first child was born, two weeks overdue. It was a very long, painful labour, back to back. The obstetrician on duty was not experienced and after 36 hours called for a registrar, leaving me in second stage labour with instructions not to push. Eventually my very large son was born by Keillands forceps. I had a huge episiotomy and was in enormous pain for over a year. No-one mentioned birth injury. The experience was very traumatic psychologically. In the 2010s I first experienced faecal incontinence. I saw a colorectal specialist who thought it was \u2018probably\u2019 caused by a birth injury. I had a proctogram and some general advice from a physiologist about position etc.\u00a0 Some years later, it became much worse. In 2024, after many investigations, I discovered for the first time I had tears in both [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":31846,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"[et_pb_section fb_built=\"1\" custom_padding_last_edited=\"on|phone\" disabled_on=\"off|off|off\" admin_label=\"Hero section\" _builder_version=\"4.16\" background_image=\"https:\/\/amelie-project.eu\/wp-content\/uploads\/2020\/10\/AMELIEHEADERBACKGOUND-01-scaled.jpg\" background_position=\"center_left\" custom_margin=\"|||\" custom_padding=\"7%||7%||true|false\" custom_padding_tablet=\"15%||15%||true|false\" custom_padding_phone=\"\" global_colors_info=\"{}\"][et_pb_row use_custom_gutter=\"on\" gutter_width=\"1\" custom_padding_last_edited=\"on|phone\" _builder_version=\"4.16\" _module_preset=\"default\" width=\"100%\" module_alignment=\"left\" custom_padding=\"|||4%|false|false\" custom_padding_tablet=\"|||5%|false|false\" custom_padding_phone=\"|||5.5%|false|false\" global_colors_info=\"{}\"][et_pb_column type=\"4_4\" _builder_version=\"4.16\" _module_preset=\"default\" global_colors_info=\"{}\"][dsm_block_reveal_text block_reveal_text=\"OUR RESEARCH\" heading_html_tag=\"h1\" block_reveal_color=\"#0e94f9\" block_reveal_delay=\"0\" _builder_version=\"4.16\" _module_preset=\"default\" header_font=\"AMELIE||||||||\" header_text_color=\"#0e94f9\" header_font_size=\"3vw\" custom_padding=\"||||false|false\" custom_padding_tablet=\"||||false|false\" custom_padding_phone=\"||||false|false\" custom_padding_last_edited=\"on|phone\" header_font_size_tablet=\"5vw\" header_font_size_phone=\"6vw\" header_font_size_last_edited=\"on|phone\" global_colors_info=\"{}\"][\/dsm_block_reveal_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\"1\" custom_padding_last_edited=\"on|phone\" admin_label=\"Collections\" _builder_version=\"4.16\" custom_padding=\"100px|0px|100px|0px|false|false\" custom_padding_tablet=\"50px||50px||true|false\" custom_padding_phone=\"\" global_colors_info=\"{}\"][et_pb_row column_structure=\"2_5,3_5\" make_equal=\"on\" custom_padding_last_edited=\"off|tablet\" module_id=\"faecal-incontinence-about-the-condition\" _builder_version=\"4.16\" background_size=\"initial\" background_position=\"top_left\" background_repeat=\"repeat\" module_alignment=\"center\" custom_margin=\"|||\" custom_margin_tablet=\"||||false|false\" custom_margin_phone=\"\" custom_margin_last_edited=\"on|tablet\" custom_padding=\"0px||0px|\" box_shadow_style=\"preset3\" box_shadow_vertical=\"40px\" box_shadow_blur=\"50px\" box_shadow_color=\"rgba(0,0,0,0.1)\" global_colors_info=\"{}\"][et_pb_column type=\"2_5\" _builder_version=\"4.16\" use_background_color_gradient=\"on\" background_color_gradient_direction=\"35deg\" background_color_gradient_stops=\"#6bc8ff 0%|#99afff 100%\" background_color_gradient_start=\"#6bc8ff\" background_color_gradient_end=\"#99afff\" background_image=\"https:\/\/amelie-project.eu\/wp-content\/uploads\/2020\/12\/Asset-1.png\" custom_padding=\"5%|5%|5%|5%|true|false\" custom_padding_tablet=\"15%||15%||true|false\" custom_padding_phone=\"\" custom_padding_last_edited=\"on|phone\" global_colors_info=\"{}\" custom_padding__hover=\"|||\"][\/et_pb_column][et_pb_column type=\"3_5\" admin_label=\"Column\" _builder_version=\"4.16\" custom_padding=\"40px|40px|40px|40px\" global_colors_info=\"{}\" custom_padding__hover=\"|||\"][et_pb_text _builder_version=\"4.16\" text_font=\"AMELIE||||||||\" header_font=\"Gotham kinda bold||||||||\" header_text_color=\"#000000\" header_3_font=\"Gotham kinda bold||||||||\" header_3_text_color=\"#000000\" header_3_font_size=\"28px\" header_3_line_height=\"1.5em\" background_size=\"initial\" background_position=\"top_left\" background_repeat=\"repeat\" custom_margin=\"||10px|\" global_colors_info=\"{}\"]<h3>Faecal Incontinence: Impact on Patients<\/h3>[\/et_pb_text][et_pb_text _builder_version=\"4.16\" text_font=\"Gotham kinda bold||||||||\" text_text_color=\"#000000\" text_font_size=\"16px\" text_line_height=\"1.9em\" header_font=\"||||||||\" header_2_font=\"||||||||\" module_alignment=\"center\" custom_margin=\"||||false|false\" custom_padding=\"||||false|false\" global_colors_info=\"{}\"]<p><span style=\"font-weight: 400;\">Faecal incontinence is a substantial public health problem. <\/span>The condition can severely affect everyday life, including:<\/p>\n<ul>\n<li>dignity and confidence<\/li>\n<li>wellbeing and mental health<\/li>\n<li>independence<\/li>\n<\/ul>\n<div class=\"x_elementToProof\">Many individuals experience:<\/div>\n<ul>\n<li>anxiety<\/li>\n<li>social isolation<\/li>\n<li>reduced participation in work and travel<\/li>\n<li>limitations in daily activities<\/li>\n<\/ul>\n<div class=\"x_elementToProof\">The AMELIE project focuses specifically on faecal incontinence resulting from injury to the anal sphincter, most commonly following:<\/div>\n<ul>\n<li>childbirth<\/li>\n<li>surgery<\/li>\n<li>trauma<\/li>\n<\/ul>\n<div class=\"x_elementToProof\">Women who have given birth represent a large proportion of affected individuals, with around 5.5% experiencing direct injury during childbirth due to perineal tearing.<\/div>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\"1\" custom_padding_last_edited=\"on|tablet\" admin_label=\"Collections\" _builder_version=\"4.16\" custom_padding=\"0px|0px|100px|0px|false|false\" custom_padding_tablet=\"||50px||false|false\" custom_padding_phone=\"\" global_colors_info=\"{}\"][et_pb_row column_structure=\"3_5,2_5\" make_equal=\"on\" module_id=\"faecal-incontinence-and-regenerative-medicine\" _builder_version=\"4.27.4\" background_size=\"initial\" background_position=\"top_left\" background_repeat=\"repeat\" module_alignment=\"center\" custom_margin=\"|||\" custom_padding=\"0px||0px|\" hover_enabled=\"0\" box_shadow_style=\"preset3\" box_shadow_vertical=\"40px\" box_shadow_blur=\"50px\" box_shadow_color=\"rgba(0,0,0,0.1)\" global_colors_info=\"{}\" sticky_enabled=\"0\"][et_pb_column type=\"3_5\" admin_label=\"Column\" _builder_version=\"4.16\" custom_padding=\"40px|40px|40px|40px\" global_colors_info=\"{}\" custom_padding__hover=\"|||\" custom_css_main_element_last_edited=\"off|phone\"][et_pb_text _builder_version=\"4.16\" text_font=\"AMELIE||||||||\" header_font=\"Gotham kinda bold||||||||\" header_text_color=\"#000000\" header_3_font=\"Gotham kinda bold||||||||\" header_3_text_color=\"#000000\" header_3_font_size=\"28px\" header_3_line_height=\"1.5em\" background_size=\"initial\" background_position=\"top_left\" background_repeat=\"repeat\" custom_margin=\"||10px|\" global_colors_info=\"{}\"]<h3>Faecal Incontinence and Regenerative Medicine<\/h3>[\/et_pb_text][et_pb_text _builder_version=\"4.16\" text_font=\"Gotham kinda bold||||||||\" text_text_color=\"#000000\" text_font_size=\"16px\" text_line_height=\"1.9em\" header_font=\"||||||||\" header_2_font=\"||||||||\" module_alignment=\"center\" custom_margin=\"||||false|false\" custom_padding=\"||||false|false\" global_colors_info=\"{}\"]<div class=\"x_elementToProof\" data-olk-copy-source=\"MessageBody\">\n<p>Regenerative medicine seeks to repair or replace tissue that has been damaged by ageing, disease or injury, offering new possibilities for treating faecal incontinence caused by injury to the anal sphincter. Among regenerative approaches, cell therapy using autologous skeletal muscle-derived cells (ASMDCs) to regenerate the damaged external anal sphincter has been the most extensively investigated.<br \/><br \/><\/p>\n<\/div>\n<div class=\"x_elementToProof\" data-olk-copy-source=\"MessageBody\"><\/div>\n<div class=\"x_elementToProof\">Europe has played a leading role in translating this approach into clinical practice. Of the five published clinical studies of cell therapy for faecal incontinence, three were conducted by European research groups and used ASMDCs delivered as a cell suspension. In the Phase II randomised placebo-controlled trial, only 58% of patients receiving ASMDC therapy responded after 12 months, while open-label pilot studies reported similar levels of subjective improvement. Overall, these studies have demonstrated only modest clinical benefit, suggesting that current cell delivery methods do not consistently achieve the desired therapeutic effect.<\/div>[\/et_pb_text][\/et_pb_column][et_pb_column type=\"2_5\" _builder_version=\"4.16\" use_background_color_gradient=\"on\" background_color_gradient_direction=\"35deg\" background_color_gradient_stops=\"#6bc8ff 0%|#99afff 100%\" background_color_gradient_start=\"#6bc8ff\" background_color_gradient_end=\"#99afff\" background_image=\"https:\/\/amelie-project.eu\/wp-content\/uploads\/2020\/12\/Asset-3.png\" custom_padding=\"5%|5%|5%|5%|true|false\" custom_padding_tablet=\"15%||15%||true|false\" custom_padding_phone=\"\" custom_padding_last_edited=\"on|phone\" global_colors_info=\"{}\" custom_padding__hover=\"|||\" custom_css_main_element_last_edited=\"off|desktop\"][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\"1\" custom_padding_last_edited=\"on|tablet\" admin_label=\"Collections\" _builder_version=\"4.16\" custom_padding=\"0px|0px|100px|0px|false|false\" custom_padding_tablet=\"||100px||false|false\" custom_padding_phone=\"\" global_colors_info=\"{}\"][et_pb_row column_structure=\"2_5,3_5\" make_equal=\"on\" module_id=\"why-are-conventional-methods-not-working\" _builder_version=\"4.16\" background_size=\"initial\" background_position=\"top_left\" background_repeat=\"repeat\" module_alignment=\"center\" custom_margin=\"|||\" custom_padding=\"0px||0px|\" box_shadow_style=\"preset3\" box_shadow_vertical=\"40px\" box_shadow_blur=\"50px\" box_shadow_color=\"rgba(0,0,0,0.1)\" global_colors_info=\"{}\"][et_pb_column type=\"2_5\" _builder_version=\"4.16\" use_background_color_gradient=\"on\" background_color_gradient_direction=\"35deg\" background_color_gradient_stops=\"#6bc8ff 0%|#99afff 100%\" background_color_gradient_start=\"#6bc8ff\" background_color_gradient_end=\"#99afff\" background_image=\"https:\/\/amelie-project.eu\/wp-content\/uploads\/2020\/12\/Asset-2.png\" custom_padding=\"5%|5%|5%|5%|true|false\" custom_padding_tablet=\"15%||15%||true|false\" custom_padding_phone=\"\" custom_padding_last_edited=\"on|phone\" global_colors_info=\"{}\" custom_padding__hover=\"|||\"][\/et_pb_column][et_pb_column type=\"3_5\" admin_label=\"Column\" _builder_version=\"4.16\" custom_padding=\"40px|40px|40px|40px\" global_colors_info=\"{}\" custom_padding__hover=\"|||\"][et_pb_text _builder_version=\"4.16\" text_font=\"AMELIE||||||||\" header_font=\"Gotham kinda bold||||||||\" header_text_color=\"#000000\" header_3_font=\"Gotham kinda bold||||||||\" header_3_text_color=\"#000000\" header_3_font_size=\"28px\" header_3_line_height=\"1.5em\" background_size=\"initial\" background_position=\"top_left\" background_repeat=\"repeat\" custom_margin=\"||10px|\" global_colors_info=\"{}\"]<h3>Why Are Conventional Methods Not Delivering Better Results?<\/h3>[\/et_pb_text][et_pb_text _builder_version=\"4.16\" text_font=\"Gotham kinda bold||||||||\" text_text_color=\"#000000\" text_font_size=\"16px\" text_line_height=\"1.9em\" header_font=\"||||||||\" header_2_font=\"||||||||\" module_alignment=\"center\" custom_margin=\"||||false|false\" custom_padding=\"||0px||false|false\" global_colors_info=\"{}\"]<div class=\"x_elementToProof\" data-olk-copy-source=\"MessageBody\">Many of the cells used in regenerative medicine, including autologous skeletal muscle-derived cells (ASMDCs), are<span>\u00a0<\/span><b>anchorage-dependent<\/b>, meaning they must remain attached to a surface in order to grow and function normally. In conventional manufacturing, these cells are isolated from the patient, expanded in the laboratory while attached to a culture surface, and then detached before being administered as a cell suspension.<\/div>\n<div class=\"x_elementToProof\">To date, all published clinical studies of cell therapy for faecal incontinence have used this conventional manufacturing approach. However, detaching cells from their culture surface before transplantation can damage them, reducing their viability and regenerative potential. This process can also trigger anoikis - a form of cell death that occurs when anchorage-dependent cells lose contact with their supporting surface.<\/div>\n<div class=\"x_elementToProof\">Poor cell survival after transplantation is one of the major challenges facing regenerative medicine. For therapies that rely on cells integrating into damaged muscle, such as treatments for faecal incontinence, low cell survival can limit effectiveness and contribute to inconsistent clinical outcomes.<\/div>\n<div class=\"x_elementToProof\">Addressing this challenge is at the heart of the AMELIE project. By developing an implantable cell\u2013microcarrier therapy that allows cells to remain attached to a supportive scaffold during transplantation, the consortium aims to improve cell survival, enhance tissue repair and deliver better outcomes for patients.<\/div>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\"1\" _builder_version=\"4.16\" _module_preset=\"default\" custom_padding=\"0px|||||\" global_colors_info=\"{}\"][\/et_pb_section]","_et_gb_content_width":"","_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-31844","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/pages\/31844","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/comments?post=31844"}],"version-history":[{"count":14,"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/pages\/31844\/revisions"}],"predecessor-version":[{"id":31866,"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/pages\/31844\/revisions\/31866"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/media\/31846"}],"wp:attachment":[{"href":"https:\/\/amelie-project.eu\/fr\/wp-json\/wp\/v2\/media?parent=31844"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}