Carole
Carole had a surgical mesh procedure for a prolapse and incontinence. Since the surgery, Carole has developed symptoms that have had a major impact on her quality of life.
Carole is a retired personnel officer. She lives with her partner and has one grown up child. She describes herself as White British.
Conditions/symptoms: pelvic organ prolapse, urinary incontinence, mesh complications
More about me...
Some years ago, Carole went to see a consultant for a pelvic organ prolapse and “minor leakage” when coughing or sneezing. The consultant “basically said” that Carole “needed to have a tape, a very small piece of tape that, to lift up the bladder and stop the leakage”, and she agreed to this. After the surgery, Carole woke up in the middle of the night “in absolute agony” and things have ‘not been the same since’.
Carole continues to have bladder and bowel problems, her lower back, her hips, and her legs “don’t work properly” and she cannot stand for any length of time. Carole also has a skin condition that has been exacerbated by surgery. Her symptoms have had a major impact on the things that she used to enjoy, including dancing, singing, and walking. She feels “stuck indoors”, she can’t sleep, and sometimes feels “useless” because she cannot do ordinary things around the house. At times she feels “as if you’re letting your family down” or that other people think she is being “lazy”. Carole tries to hold onto her sense of humour when describing her swollen abdomen as “a badge of dishonour”, but adds “I’m laughing about it but I’m really not laughing inside”. She has “more or less resigned [myself] to the fact that things to do with gynaecological are never going to be the same again”, and plans to concentrate on other health issues.
Carole has found a patient advocacy group where she has gained knowledge and made friends who support each other. She feels “very lucky” to have a supportive and loving partner who has stood by her. Carole remembers being told that her sex life would return to normal within weeks, and yet this did not happen. She describes a “sense of bereavement” due to the impact that the surgery has had on her sexual relationship with her partner: “we have lots of fun together but basically we are just like brother and sister and that’s not how we were before the operation”. She was referred to a psychiatrist with the implication that her problems were “all in your head, you’re imagining things”. She feels that she has been “lied” to and “dismissed” by some health professionals.
Carole acknowledges the pressures on the NHS but has felt as if she is being treated like “a time waster” or a “hypochondriac”. She feels that more listening and greater empathy would make healthcare “a better experience for both the patient and the doctor”. Carole has lost her faith in doctors and feels that her experiences have made her more assertive. She would advise other people to “research, research, research”: “doctors are human too and they can make mistakes”. She feels that her symptoms are related to surgical mesh, although further surgery to remove a section of the mesh has not helped. She does not feel that she was fully informed about the procedure and its potential complications. Carole would like health professionals to ask themselves, “are you there to heal or are you there ... [to] get to the top of the ladder?” and emphasises the need to “first do no harm”.
Carole feels a “sense of bereavement” for her sex life which ended after mesh surgery. She feels “lucky” that her husband stayed by her side.
Carole feels a “sense of bereavement” for her sex life which ended after mesh surgery. She feels “lucky” that her husband stayed by her side.
As far as any sexual contact that ended more or less, very shortly after I had the operation in 2007. I’m very lucky that I’ve got a partner who is the most patient man and very kind man that I’d ever wish to meet. And he’s stayed by my side, whereas a lot of people that’s their relationships ruined and their, their partners have gone. I still feel a sense of bereavement if you like, if I let myself think too deeply about it I get very, very upset. And of course, you know I know it, I’m, I can’t get back what I had, so you know I more or less have to give myself a poke and say, “You know, get, take control of yourself. Crying about it is not going to bring it back.” You know you can’t replace something like that really. But we, I’m lucky, I’m lucky that we’ve got a very, very good relationship, my partner and I, and we have lots of fun together, but basically we are just like brother and sister, and that’s not how we were before the operation.
Carole says that doctors are dismissive of women’s symptoms, and feels that men’s complaints are taken more seriously.
Carole says that doctors are dismissive of women’s symptoms, and feels that men’s complaints are taken more seriously.
You try to offer a little bit of information about your condition, and they really don’t want to know. And I, I feel half the time that because we’re women we’re dismissed. And of course, if you’re a man and you’re suffering, it’s a well-known fact men don’t like complaining, so they probably won’t tell the doctor a lot of the conditions that they get. Whereas I think women probably are a little more open if they’re suffering from something, they’re gonna say something. So I really don’t feel that we are being listened to.