Susan
Susan had mesh surgery for urinary incontinence and has been living in pain since then. She has had the mesh partially removed.
Susan has a long standing disability and is no longer employed. She lives with her husband and 12 year old daughter. She has two children. Susan describes herself as white Northern Irish.
Conditions/symptoms: urinary incontinence, mesh complications
More about me...
Susan went for a routine smear test and was diagnosed with a pelvic organ prolapse: she says, “I didn’t know I had a prolapse it wasn’t bothering me”. She was referred to a urogynaecologist who offered to ‘fix’ both her prolapse and mild urinary leakage in one procedure. Few other details about the surgery were given, but she remembers being told about one patient who had leg pain following the surgery but, “within a week, everything was back to normal”. Susan describes how she “woke up in agonising pain” after the surgery and could not move her leg. She was reassured that this was “normal”, and that there was “nothing to worry about”. Susan left hospital in pain and describes an occasion at home where the pain was so “horrendous” that she could not get out of bed to go to the toilet. At this point, she was admitted to hospital where she felt like she was being ‘treated like I just wanted drugs’. Susan still feels “disgusted”, “angry” and “shell-shocked” because of this experience.
Susan told the surgeon that something was still not right and was assured that it was “nothing to do with the mesh”. It was only at this point that Susan found out that mesh had been used: it was the first time that the surgeon had “used the word mesh”. The surgeon offered to cut the mesh in order to relieve pressure, which Susan declined: “I don’t want you to cut anything”. By this stage, Susan was taking a cocktail of pain medications that made her feel very unwell and exacerbated her hiatus hernia. This went on for about a year, and clinicians continued to assure her that “everything felt anatomically right and they couldn’t find any mesh erosion”. Eventually, Susan was referred to a surgeon with expertise in mesh removal. She described the surgeon as “compassionate” and “understanding” but further surgery made her symptoms worse. Susan kept asking if they had managed to remove all of the mesh and was assured several times that it had all been removed. However, whilst waiting for a further investigation to explore this, Susan decided to seek a second opinion and discovered, from a different surgeon, that not all the mesh had been removed. Susan describes the disappointment after this consultation: “I’m sitting at home in tears, in absolute bits, saying I have been lied to yet again”. She says that she has still not heard “a dicky bird” about what will happen next.
Susan describes some of the symptoms that she lives with on a daily basis: “it nearly kills me” to hoover; “I can’t stand and cook a meal”; “I can’t take a pot of boiling water of potatoes off the stove”; “I can’t get into a shower”; “on my bad days, I’ll just have to lie in bed”; “my leg gives way”; “I have a numb toe”; “the soft tissue around my vagina will split every time I take an antibiotic or if I happened to wash too hard”. Susan feels like she is living “in limbo” and it is extremely hard for her to think that she might “always be left in pain”. Susan really wants to move on with her life. She found an online support group for women injured by mesh surgery, and this has helped her to know that, “I wasn’t on my own” and that “it wasn’t all in my head”. Susan now supports other women and plays an active role in highlighting their stories of mesh surgery in order to improve healthcare; she is proud of this role.
Susan has had to advocate for herself throughout this experience. She feels like she has been “passed from pillar to post” and “lied to” by healthcare professionals. As a result, Susan no longer trusts doctors and highlights that, without the facts, she did not give informed consent for her surgery. Susan feels that her experiences will continue to have repercussions on future healthcare: “my name’s mud within the health service ...anything that happens to me now and with a gynae nature is going to be stressful for me and probably stressful for the clinician too”. Susan also describes some positive experiences of healthcare throughout her life and does not have “a bad word” to say about clinicians who ‘care’ and who go “over and beyond to help”. For example, “I have never met a paramedic that has been rude or doesn’t want to be there”. She describes some health professionals who have been kind, who have listened, who have given her options, and who have been open and honest about problems. Susan feels that patients should not be frightened to speak out if they do not agree with the doctor. Similarly, she strongly feels that clinicians should listen so that they can understand what people are going through, and that they should “admit” when they make a mistake. Susan feels that women know their own bodies better than anyone else and her advice is, “don’t be frightened to speak out ... question, question, question”.
Susan felt ill after being prescribed a “cocktail” of multiple painkillers at once.
Susan felt ill after being prescribed a “cocktail” of multiple painkillers at once.
She was seeing me every two weeks, every fortnight, which was fine. Keeping an eye on, changing drugs because the drugs were making me so ill because I was on such a cocktail of them. I, I mean I, altogether I was on gabapentin, tramadol, amitriptyline, and codeine. So I was on all of those drugs at once. And they made me so ill, so ill that I mean I was just green, I was vomiting, diarrhoea, I, the pain from the back was horrendous, so I was trying to cope with everything and every time that I wanted to be sick or think I had to get up to go to the toilet.
The physical and psychological impacts of mesh complications have deeply impacted Susan’s life.
The physical and psychological impacts of mesh complications have deeply impacted Susan’s life.
The psychological issues that, that come with anything, any health and, and we all know that when you go in for surgery there’s always risks, right. But most of those risks are told to you, none of the risks were ever mentioned to us. But yet they knew what the risks were, it’s on the packaging, I mean it even says, “May cause death.” You know I mean, I don’t know in the future if this is, if they don’t get it out what harm it’s going to do to me, is it going to cause me to have sepsis, is it going to, to cause me the, the, I mean, I know and my family know and they can see it on a daily basis how I’ve gone downhill. How I can’t stand and cook a meal. How I can’t, take a pot of boiling water of potatoes off the stove and go and drain it. How I can’t get into a shower. How my husband has to help me. I mean I’m only 55 years of age, you know, so they, I mean there’s, they the Hippocratic oath you know first do no harm, don’t do any harm.