Jan

Age at interview: 66

Brief Outline:

Jan has been diagnosed with prolapses: a stage one rectocele (prolapse of the rectum into the vagina), and a stage one cystocele (prolapse of the bladder into the vagina). She also suffers with urinary urgency and leakage. She feels that her symptoms are related to menopause.

Background:

Jan is a retired primary school teacher. She lives with her husband and has two grown up children aged 27 and 31. She describes herself as White British.

Conditions: pelvic organ prolapse, urinary urgency, urinary incontinence

More about me...

Jan has developed bladder problems in the last few years which are having an impact on her life. She started to notice that she was leaking whilst playing tennis, coughing, or sneezing, and found this extremely embarrassing. Her GP had previously mentioned a possible prolapse, and Jan convinced herself that this was severe and would need surgical repair. After developing a urinary tract infection, Jan made the decision to go to see a private urogynaecologist who gave her hope for effective non-surgical options. Jan is now waiting to see a private physiotherapist who specialises in pelvic floor problems and feels more hopeful that things can improve.

Jan described the emotional impact of her bladder symptoms. She had started to get anxious about travelling anywhere without easy access to a toilet. At times she has had to “nip behind a bush” when walking with friends. This problem has stopped Jan continuing to be a supply teacher, a job that is integral to her identity and keeps her feeling “young and happy” and “useful”. Jan feels angry with health professionals for not giving her the knowledge that might have empowered her to keep in control. She also feels angry with her own body for letting her down, particularly as she has always tried to look after herself.

Jan has found a lot of her information from a social media platform. She has been shocked to find out that many younger women suffer with prolapse and incontinence. She feels that incontinence is a silent epidemic that is not seen as a priority in healthcare. She would like healthcare professionals to take time to listen, and for the public to be more open about urogynaecological issues.

Jan talks about stress urinary incontinence and the shock she felt when she began to have accidental urine leaks.

It was really four years ago, I started to play a lot of table tennis again, having not played for many years and it was really only table tennis when I was batting and suddenly realising actually the embarrassment of, I had lost some urine and I hadn’t, I wasn’t wearing pads and the total anxiety about trying to get to the loo very, very quickly but actually not particularly needing the loo. I’d been to the loo before I went to the activity and the shock of it really. ‘Oh my gosh what’s going on?’ and similarly perhaps I used to go for walks with my husband about and suddenly I needed to have a quick cough or a sneeze and the same thing beginning to happen and realising without any control over it at all, you’d, you’d lost some urine and had to rush home and change your clothes and the reality of going out to the supermarket for the first time and buying some pads as a way of coping with that. That was a big a big feeling of, ‘Oh my gosh, I’m getting old. Is this what life is going to be about now from now on?’ and not really knowing so I don’t, I think I managed to keep going for about six months and thinking, ‘Well perhaps I’ll just not drink any water before I go’ but it didn’t make any difference. It wasn’t about the water intake at all. It was all about just not being able to hang onto to the, the urine.

Jan loved being a teacher. She’s retired now and wants to go back as a supply teacher, but worry about toilet access is holding her back.

I’m still a primary school teacher that, although I’ve retired, I have gone back into primary teaching as a supply and I actually registered last a year ago and I’ve still not started to teach in a primary school because of my anxiety over the toilet issue and so they ring me up regularly, “Are you ready to work yet?” and I’m just in a dilemma. The time I drove to a school, and I didn’t know where the toilet was, and I’ve got to sit in the classroom with lots of children and then I’m not sure how long before I can get a break. It has totally stopped me from continuing work as a teacher.

Jan encourages uptake of pelvic examinations to get answers.

I would much sooner have somebody check down below and help me with the conditions. It only lasts for five or ten minutes. They’re so kind, they’re so thoughtful. I would, I like to be informed so for me it’s all about, please yes check me as much as you need because if that can help me have a better quality of life, it’s well worth that embarrassment for five or ten minutes.

Jan feels that she is able to “go forward” and learn to live well with prolapse and incontinence.

It has for me having the knowledge just gives me, gives me back control. It helps me believe that I can go forward with this now and that it is, I’m not a lost cause and my body’s is not just failing on me and that’s it and I’m going to have to just put up with this for the rest of my life. I mean it’s, you know, I know it’s not a quick fix, but I just feel this is it I’m going to do as much as I can now to really try and get myself, so I will be playing tennis and table tennis again and shortly and I’m going to go on holidays again. In fact, for the first time yesterday I went on a bus into our local city and thought, I’ve had a, I’ve had two months where I have not even gone into the city because of worrying about toilets.

Jan finds it challenging to get appointments with the same GP every time.

Going through the normal doctor’s appointment, I think one of the big problems with at the moment I moved up to a new city four years ago and I have never once seen the same doctor twice in my local doctors. They’ve got probably, I don’t know, six doctors, three women, three men and just trying to get an appointment nowadays is hard enough so then trying to find somebody that you get some sort of rapport with it just doesn’t happen because you just don’t get to see the same doctor more than sort of once at a time.

Jan chose to go privately for help with prolapse and urinary incontinence because she “wasn’t really getting anywhere” with the NHS route.

Well I’ve not, I’ve not had any, this is the reality that in the four years, I didn’t get offered by my doctor to be referred to any hospital. They said it wasn’t severe enough and another friend has said the waiting list to get in is over a year to get any sort of test for the referral for stress and urge incontinence, it’s so common with women and the NHS has offered me to go back to the pelvic floor lady but she says it’s an over six month waiting list to get to see that nurse again and so it’s only through the private health now that they’ve phoned me and I’m having urodynamic tests done in three weeks’ time. I’m seeing the private pelvic floor lady in two weeks’ time and this is what I’ve been waiting for somebody actually to do some tests to see how severe it is, what they can do. The consultant mentioned a whole list of lots of things they can do apart from major surgery includes, including Botox injections at the neck of the bladder and so it’s, it’s given me lots of sort of positive feeling that ‘Yes, I’m gonna, I’m gonna try and do my best to sort this out without major surgery and try all these different avenues first and hopefully I won’t need surgery.’

Jan’s healthcare professional put her “at ease” and gave her enough time to hear and understand.

I think the best one was literally this week seeing this particular lady. From the moment I was invited into her room she put me at ease. She wasn’t dissimilar age to me actually, probably only about eight years younger, so she talked in many ways all about she’s struggling with some symptoms that I’m struggling with. Listened to me, actually gave me longer than the time allotted, explained so many things to me and helped to write things down for me so I could take them home. Really listened to everything I had to say to her, was very well informed. Was very positive about the outcomes for me. When she did the internal, she sort of said, “There’s lots we can do there.” Was very caring in her approach and has followed it up very quickly since I was with her with three phone calls to get things going. So it was a combination of somebody that just had the time to listen. I didn’t feel I was rushed. I felt I could, I had a long list of questions that she was very keen to just answer very thoughtfully each one and she, I felt confident, and I’d done a bit of research, she was somebody that really knew the information.