Fran
Fran has experienced longstanding difficulties with everyday activities since surgery for prolapse and incontinence in 2013. Fran feels that her symptoms are caused by the surgical mesh and does not feel that she was fully informed about the procedure.
Fran is married and lives with her husband. She has four grown up children. Fran describes herself as White British. She is no longer in paid employment but is active in community work.
Conditions/symptoms: pelvic organ prolapse, urinary incontinence, mesh complications
More about me...
Fran was referred to a gynaecologist in 2008 about a pelvic organ prolapse and also mentioned that she had stress incontinence when she “had a really good laugh”: “I suppose it came to a point where I realised that I was having some incontinence issues”. The gynaecologist recommended “simple surgery” which would solve the problem. Fran felt an “intrinsic uneasiness” about this surgery and at first, she cancelled. However, she went back to the gynaecologist about some other symptoms, and during the examination, where there were trainee doctors present, the gynaecologist “pressed something inside” her and she “flooded”. Fran felt “degraded” and embarrassed by the examination and concerned that this ‘flooding’ might happen during intimacy, she agreed to go ahead with surgery in 2013. After the surgery, she woke up with severe pain and was unable to pass urine. The surgeon reassured her and said that she was “one of the unlucky ones” that would need “to retrain your bladder”. Fran was taught to self-catheterise and discharged with 300 catheters. Since this surgery, she has had more than 250 appointments for multiple tests and procedures.
Fran describes a life now lived around her bladder problems: “instead of you having a life, it becomes a medical life”. Fran has to take painkillers to “get out of the door” and cannot see a way forward. Her bladder and bowel are damaged: “I can’t walk, I can’t do anything physical”; “the nerve pain is really bad”; “I’ve got a hiatus hernia, …acid reflux, … [and my] teeth are starting to erode”; “I’ve had allergies, hives and things like that”; I’m “looking like I’m six months pregnant”. Fran has not worked since her surgery and is deeply worried about how she will manage financially in the future: “It’s just awful, the whole thing’s awful, it’s a mess”.
Fran feels that there is a stigma about incontinence, and it took her a long time to talk about her experience. She feels that she needs help to deal with the emotional toll of her symptoms and has attended a pain management programme. Although she says that she is “in total denial that that this isn’t going to get better”, she is starting to realise that she needs to “take control back and stop being pushed from pillar to post”. Fran has found support from a patient advocacy group where she has heard other people’s stories. This has helped her to realise that she is not alone, and she finds solace in helping other people through their difficulties. Fran also gets support from her church and finds some peace listening to church music.
Fran feels that her symptoms are caused by surgical mesh and is now waiting to discuss mesh removal. She does not feel that she was fully informed about her surgery and feels dismissed and let down by the medical profession: “the mesh being plastic netting which they never ever explained to me”. At times, Fran feels like the medical profession are blaming her and that they are treating her as if she is an “inconvenience”. Fran feels angry that “nobody is taking responsibility for what they’ve done” and would like health professionals to understand the “massive ripple effect” in people’s lives. As a result of her experience, Fran now feels that it is important to listen to your own intuition, to do your own research, and to not “take what consultants say as gospel”.
Fran tried her best to empty her bladder fully, but continued to get infections. She felt that her doctors assumed she was doing something wrong.
Fran tried her best to empty her bladder fully, but continued to get infections. She felt that her doctors assumed she was doing something wrong.
I had to go home with this pack of self-catheter things, cath, SpeediCaths I think they call them, and I had to start having to do this and I just went from worse to worse. My abdomen was absolutely swollen. The pain didn’t get any better. All the time my bladder started to fill, it got worse. And it’s a bit like a crescendo if you know any music, it’s like the pain increases as the bladder fills and then, you know, I’d have to keep self-catheterising, measuring everything. I went through all this palaver of measuring everything that was going in and measuring everything that was going out to try and help me to make sure that I wasn’t leaving anything in so I would try and minimise infections because they were coming fast and furious and it just went on from there really, it’s just the, then they went through everybody in denial that it’s to do with that. It’s to do with me, it’s my fault that it’s not working. There’s something I am not doing right.
Since her mesh surgery, Fran feels incredibly low that she now has to live a “medical life” instead of “having my own life”, and she is deeply concerned about the future.
Since her mesh surgery, Fran feels incredibly low that she now has to live a “medical life” instead of “having my own life”, and she is deeply concerned about the future.
It’s too much, it’s like you’ve got your pain aspect that you’re constantly in pain and that never goes away and you’re, you’re just taking medication all the time. The bladder uh, constantly living around your bladder problem, like going to the toilet, how long you’re on the toilet. It’s just all of it, the hernia. I don’t know it’s all of it. It’s all of it [interruption] just cannot, there’s a whole mess of medical things that your life is around, becomes medical, like instead of you having a life, it becomes a ‘medical life’, a medical problem, you are a ‘medical problem’ instead of having your own life anymore. They’ve just taken it away; it’s gone because of just the one procedure. But I can’t, I just don’t, you know, just I think the mental health, you know, its psychologically having to deal with the fact that you’re going to get worse. It’s scary, you know, as I say it’s frightening. That’s me, I’m frightened for the future, I’m frightened for if they take it out. I’m frightened if they don’t take it out so, you know, you don’t know which way to go and there isn’t any help in it, you know, they don’t, I think they’re trying to cut their lists in the mesh centres by trying to put off patients from having it removed now so they’re saying, you know, you’ll be better off learning to live with pain which is why they’re offering the psychological help in the pain management side because they want patients to learn to mentally live with it but I don’t see that as a long term solution to be honest.
Fran finds it frightening to think about her mesh damage getting worse in the future.
Fran finds it frightening to think about her mesh damage getting worse in the future.
But, It’s just so depressing, the whole thing is so depressing, and I’m frightened. You know, you think of the future, if they take the rest of this out, will I walk again. That’s scary, scary stuff. If I don’t get it taken out and I just let it get worse and worse and I keep popping the pills to try and do anything, am I making it worse by doing that because its false security isn’t it? It’s like you take pills to block the pain. A bit like people do psychologically with drugs I suppose, you know, I’m doing it physically to block the pain, ‘Am I making that spine damage worse? Am I making my nerve damage worse?’ Nobody tells you, I have no idea the answer to these questions. It’s just awful, the whole thing’s awful, it’s a mess.
Fran found it so difficult to talk about her complications after vaginal mesh surgery and tried to cover it up because she didn’t want to be judged.
Fran found it so difficult to talk about her complications after vaginal mesh surgery and tried to cover it up because she didn’t want to be judged.
Yeah, they, one of the things that I found was that it took me a long time to openly talk about actually even having a urinary incontinence problem to begin with anybody outside of the medical profession I suppose to begin with, and even with my husband to a certain degree, to how bad it was, something like that. So that when there was a complication and I was in a lot of problems, I actually tried to cover it up that I had actually had transvaginal tape, I suppose, because I didn’t want people to know that you know maybe I, maybe I could wet myself or something like that, and so it took me a long time to be able to talk about it and, because it is a personal area, you know, it is your vagina, so you don’t normally talk about it. Well I never did put it that way in public conversations, in friendship even. You know, it wasn’t, it was only when I felt confident and built a relationship with one particular person which is my friend that had it done as well, had the TVT fitted as well, that--and I didn’t know, it was just that I just opened up one day that I had a complication from the surgery in the past and then I said that it was something that they had done, with, I just used the word mesh then, and then she opened up and told me about herself. But I didn’t talk about that for a long time, a really long time, because it’s a personal area, you know, you don’t talk about this, you know, you don’t talk about it, and to talk about, even with my husband, you know, difficulties with, being in a lot of pain in a sexual intimate situation that was very difficult too, it wasn’t easy, you know, trying to cope with not being able to, you know deal with pain, especially after pain in an orgasm say, because damage that has been done down there, increases the pain after an orgasm because that whole area is inflamed, and so it is not pleasurable anymore. You are not comfortable. And you are in a lot of real discomfort afterwards. And, trying to talk about that. And even things to do with, you know, I told you about my hands and the nerves and things like that. I, kind of like really hurts, you know, really hurts, but then it all stems from this one thing that started in your vagina. Really hard, you know. How do you start conversations like that? It limits your ability to converse with anybody about where is your pain, where did it stem from. You know, everybody wants to know, “Well how did it happen?”, you know.