Katy
Katy has had a surgical procedure, using surgical mesh, to treat urinary incontinence. She has also had a total hysterectomy. Katy has suffered pain and other symptoms since her surgery and has recently had the mesh partially removed. Her pain has continued to get worse since the removal.
Katy lives with her husband and has two grown up children. She describes herself as White British. Her condition causes her substantial difficulty with day-to-day activities.
Condition/symptoms: urinary incontinence, mesh complications
More about me...
Katy works as a firefighter and relies heavily on being physically fit. Some years ago, she went to the doctor with “slight stress incontinence” whilst weightlifting and was recommended a surgical transvaginal tape procedure (TVT). She remembers being told that it would improve her sex and social life and thought that this option sounded “wonderful”. Since her TVT surgery, Katy suffers with persistent painful back spasms and has been diagnosed with Fibromyalgia, a long-term pain condition. Katy was also recommended a total hysterectomy, by a different surgeon, for pain and heavy bleeding, and regrets having her ovaries removed. She does not feel that she was full informed about either surgical procedure.
Katy feels “humiliated” by her experience. She finds it embarrassing to talk about incontinence and pain and is concerned that she will lose her job if her colleagues find out the extent of her difficulties. She describes herself as “wrapped up in this miserable cloak that …shrouds you”. Whereas she used to feel “sociable” and “active”, she now feels that she is “a completely different person” who chooses to “hibernate in the house”. Katy also worries about the impact on her marriage and intimacy. The impact of this is exhausting.
Katy does not feel like she has been believed or listened to by health professionals and describes some of them as being a “bit overpowering”. She feels that some have tried to convince her that the problems are due to a back problem or stress and mental health, rather than listening to her experience. At times, this has made her doubt her own symptoms and made her feel “small and insignificant”. Katy has lost faith in the medical profession and, as a firefighter, finds this particularly difficult because she has always felt that the “medical profession is such an amazing profession”. She realises that it only takes a few to “rock the boat” and make you lose faith. Katy sometimes wonders how many people “sitting right next to you” have the same problem with urinary incontinence. She is hopeful that people have started to be more open about women’s health. She has found great support from a patient advocacy group.
Katy would like health professionals to treat patients as “a whole person and not just this ailment”. She advises other people to “find out everything you need to know before taking that step forward”, to ask questions and challenge medical decisions. She asks health professionals not to “take it personally” if people challenge them.
For Katy, mesh surgery badly affected her sex life. She says she is embarrassed to have sex with her husband and it has completely changed her.
For Katy, mesh surgery badly affected her sex life. She says she is embarrassed to have sex with her husband and it has completely changed her.
I just feel that, you know, every time you go to the doctors, they’re not, they don’t actually listen to what you’re saying to them. You know, when you’re saying, yeah, but I’ve got pain around my pelvis. It’s really hurting. It feels like someone’s kicking me. Sex is, you know, I can’t have sex. I’m embarrassed to have sex with my husband. And I used to have a really high sex drive. The TVT operation was sold to me as in you know, it’ll stop the, I had a tiny amount of stress incontinence and it was sold to me that fact that it would stop that stress incontinence and it would improve your love life, and you know, you’ll never have to worry about things like that again. And it completely did the opposite.
I worry about that quite a lot, especially from having quite a lot of time where my sex life was, even still, my sex life isn’t great because I worry. When I first met him, obviously, oh I don't know, it was just yeah, I worry about him all the time. I sometimes, you know, I have said to him on more than one occasion, you know, I wouldn't blame you to go off and just leave me and be with somebody else. You’d be happier. I don't know, yeah. It’s, he’s a, luckily for me he’s a lovely, lovely guy. But yeah, I would, I’ve tried to sabotage our marriage in ways like, you know, trying to sort of get him to leave. Picking arguments for the sake of arguments. So that, you know, when he’s, when he’s I suppose a bit horny and he comes up and puts his arm round me, I’ll sort of make excuses. But [sighs] I’ve tried now, I try now to be honest with him and open about how I’m feeling, rather than just sort of pushing him away or but even like now, I won’t, it’s weird, ‘cos before I’d’ve just got undressed in front of him and jumped in bed or whatever. And now, I’ll go into the bathroom and get undressed because I don’t want him to sort of think either, oh gosh, look at her or I’m a bit horny because I don’t want him to feel like that from getting into bed because I just wanna get into get into bed. I wanna curl up and go to sleep [laughs]. But the thing is, I feel that if I told the doctor that, the doctor would turn round and say, well it’s because you’re getting older [laughs]. You know, because older women don’t have sex lives, you know, which I don’t feel like I’m 50 by the way, mentally I’m very, very much younger [laughs].
Katy felt like her doctors would just “throw painkillers” at her regardless of the side effects.
Katy felt like her doctors would just “throw painkillers” at her regardless of the side effects.
The trouble is they just throw painkillers at you all the time. Here, have painkillers. But the trouble with a lot of these Pregabalin and other things that morphine and things like that that you get given is they just completely wipe you out. And it’s, you know, I just find that I can’t, I just cannot take them. If I take them that’s the rest of my life gone because I just literally am just lying on the sofa, doing nothing, ‘cos I feel sick all the time. So, I take Zapain I take amitriptyline and every now and again, I’ll have a few glasses of wine just to self-medicate [laughs]. But I try not to take as much, you know. I’ve got a cupboard full of all different prescriptions that I’ve had over the year or so, but, I try really hard not to take them.
Katy says that she would not have had her ovaries removed if she had known the effects of sudden menopause.
Katy says that she would not have had her ovaries removed if she had known the effects of sudden menopause.
Looking back now, if I had you know, the information I’d needed I’d have never had my ovaries taken away. So, yeah, had the hysterectomy, ovaries went. I was never given any information about what it meant for my body or myself after hysterectomy. Had the hysterectomy, got an infection afterwards and so I ended up back in hospital with IV intravenous drip antibiotics. And then that was it, really. In all, I think it was six weeks or six months check when I saw her again and then that was when she referred me to urogynae and the ball rolled, really for me to have the TVT taken out. So, you know, yeah. Yeah, but I’m always shocked at how little information we get when, you know, something so massive as a hyst—makes you want to cry, actually. Something so massive as a hysterectomy and no information, nothing. My mum’s not had a hysterectomy and so I had nobody around me who’d had a hysterectomy to even ask and it was, to me it was just an operation. Didn't really think of the consequences of it. You know, it was going to stop the pain. That was all that was in my head. If they stopped the pain and, and got rid of the bits that you know, were causing the pain then that was all good. But no, it’s the worst thing I’ve ever done, I think, bar from the TVT. It’s the second worst thing I’ve ever done.
Katy used to have the utmost faith in the medical profession before her mesh surgery. Her lost trust has had a big effect on all future dealings with healthcare as she no longer knows who to believe.
Katy used to have the utmost faith in the medical profession before her mesh surgery. Her lost trust has had a big effect on all future dealings with healthcare as she no longer knows who to believe.
Well, I used to believe doctors. Doctors were obviously, you know, like I most probably imagine the majority of the public you sort of, your doctor as quite held in high esteem, you know. They’re very intelligent people. You know, they do a lot to get to where they are. I’ve got so much respect for anybody in the medical field. But, I also now know there are people in the medical field that actually don’t really care about people. And that is an awful way to live because you know, I, like I say, I have so much respect for anybody working in medicine. And it’s given me a clouded view of that, which I, I don’t like that I’ve got a clouded view. When I hear people sort of talking about oh, you know, this operation that operation, straight away, I’m thinking about what could go wrong. Do I believe what the doctors say? No. And that’s a horrible thing to believe. You go to your GP hoping that they’re gonna help you with whatever, you know, mental ailments or physical ailments, you’re hoping that they’re gonna help you and give you the best and sound advice. And now, I go in and come out and I don’t believe what they’ve told me.
And that’s, that’s debilitating because I come away more worried about what they’ve told me, ‘cos then I think well, you know, what if they’re just saying that or [inhales] yeah, it, it’s whereas before I would’ve believed everything they said. They are the GP, they know you know, you know, [laughs]. You used to go to the GP to get your passports and things like that signed because they’re such an honourable person. And you know, across the board and it’s just a horrible to then know you’ve got to go and see somebody because you’ve got an ailment and go without having that confidence that’s person has got your best interests and that’s, I don't know, that’s just how I feel now. I worry about every little bit. If it’s medical and I need medical advice, I worry so much before going that is this person actually going to be you know, worried about how I react to something rather than, you know, not having my best interests at heart and seeing me just as a number rather than an actual person.
Katy says “knowledge is power”, and she encourages others to find out as much as they can before making a healthcare decision.
Katy says “knowledge is power”, and she encourages others to find out as much as they can before making a healthcare decision.
My key message to any woman now going through a journey or not is knowledge, knowledge is power. Find out everything you need to know before taking that step forward and you know, I just think you’ve got to learn about everything that’s being done and said to you, don’t take everything for a pinch of salt. You know, just find out everything you can before you make a decision, it’s, it’s got to be. It’s really got to be. And there are great people out there. There are really kind, loving people that work within the health service. But you need to be knowledgeable about what you’re saying yes to because I was blind and just walked in and put my trust into people that you know, for one reason or another, I don’t think anything was intentional. I don’t think people intentionally go out and do, well, I hope to not think that. I wouldn't want anyone to think that anybody in the care service would behave like that. But, yeah, knowledge.
Katy would like healthcare professionals to listen to their patients and not dismiss them, as this can have a real impact on future appointments.
Katy would like healthcare professionals to listen to their patients and not dismiss them, as this can have a real impact on future appointments.
My key message would always be, listen to the person, take them as a whole. It’s just don’t undervalue them. You know, because by dismissing somebody or not listening to them, you’re completely put them on edge for the next time they have to have, you know, they have to go and see a professional because my trust is gone. And it doesn't matter how lovely and how nice the next professional person is, I have now got doubts in my head before I even walk in. And the trust isn’t there, you know. So, it’s [sighs] I don't know. It’s but I’ve said it haven't I. I’ve said, you know, about communication and body language and just, you know, you have to be honest. Not everybody wants to hear what you’re saying to them and some people, I’m sure there’s people out there that want to go in and get a sick note and they’re not going to get it because they’re really not that sick and they don’t want to hear that. So, I know there’s going to be times where you have to be blatantly, you know, you have to be dismissive of somebody. “No, you’re not dying today. You can go to work” sort of thing [laughs].