Janet

Age at interview: 70
Brief Outline:

Janet has been living with uterine prolapse for fifteen years. She underwent a hysterectomy and tried a vaginal pessary, but neither provided a solution. Janet currently manages the condition through lifestyle adaptations.

Background:

Janet lives on her own and has two grown up children. She is a retired local government officer and describes herself as White Scottish.

Condition: pelvic organ prolapse

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Janet first became aware of a bulge in her vagina fifteen years ago. Her GP referred her to a gynaecology consultant who informed her that she had a uterine prolapse (when the uterus slips down into or out of the vagina) and recommended that she undergo surgery. Since she was “really not very keen” on surgery, Janet chose to see an NHS women’s health physiotherapist instead. Janet attended a physiotherapy course, which “really was great”. She appreciated the “holistic approach”: she felt “listened to” and like “we were working together to try and seek the best solution”.

Around two years later, the bulge became “troublesome” again and she was referred back to a consultant. While the consultant encouraged surgery as the next step, Janet decided to hold off until the next year when she underwent a hysterectomy. After the surgery, Janet was informed that the surgeon had also done a “couple of repairs” that had not been previously discussed. Three months later, Janet began experiencing severe pelvic pain. Although she was issued an urgent referral through her GP, it took several months before she was seen, and an internal scan showed that Janet had multiple pelvic organ prolapses. She was advised to get further surgery but was concerned that the success rate was too low, and that she would likely require follow-up operations.

Janet chose to look into things herself, and spent time consulting the internet for potential solutions. She lost a bit of weight, started doing Pilates exercises, and became more careful about lifting things. Janet also began keeping a diary of what made the condition worse, which helped her identify triggers. Through adjustments to her lifestyle, she “kept it relatively under control”.

After having an adverse response to a programme of pelvic floor strength exercises that she had arranged and paid for privately with a personal trainer, Janet decided to book an appointment to have a pessary fitted. Although she felt hesitant, Janet gave into the consultant’s encouragement to have it done that day. After being quickly discharged from the hospital, Janet immediately experienced discomfort and had issues urinating. The next morning, she woke up to find that she’d wet the bed. Janet received an urgent appointment to have the pessary removed. Since this experience, Janet is determined not to have a pessary inserted in the future as she was “hugely traumatised” by this experience.

At the moment, Janet lives with an intermittent “dragging pain” from her prolapse. She has found some relief from a vaginal lubricant and lifestyle adjustments but accepts that there isn’t any “magic bullet”. Janet is determined not to let needing to find a toilet stop her getting out. Her approach of “complete pig-headedness” has allowed her to carry on with activities like walking and cycling. She feels that she has “reached the end” of what the health service can offer, and will only go back if her condition changes.

Reflecting on her experience, Janet wishes that there had been more psychological support for her condition. She feels that “the bit that really got to me” was the psychological aspects. Janet has found that the medical professionals often make prolapses feel “trivial” and like an inevitable consequence of childbirth. Janet thinks that health services could be improved by teaching women about pelvic floor exercises prior to having baby. She advises women to “ask questions” and not agree to a procedure until they’re aware of all of their options. Janet is glad that more people are talking about pelvic prolapse and emphasises the need for hospitals to invest more in support groups and informal spaces for people to share their experiences.

Janet had a negative experience with having a pessary inserted, she felt dismissed when she raised concerns that it had been inserted wrong and is now put off having a pessary in the future.

Janet had a negative experience with having a pessary inserted, she felt dismissed when she raised concerns that it had been inserted wrong and is now put off having a pessary in the future.

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I went to a clinic in a local hospital, emailed consultant and she said, “I see you’re here to have a pessary fitted,” and I said, “Well, actually I’m here to discuss whether you think that would be helpful.” And she said, “Och, we’ll just do it,” and I don’t, I mean I’m an intelligent, bright woman. I’ve no idea why I didn’t, why I just said, “Right that’s fine,” and she popped it in as she described it and said, “That’s fine, we’ll see you in six months.” So I, so I went off and about an hours’ drive from the hospital, half way in the journey I was so uncomfortable and I thought, ‘I don’t really know what to do,’ so I phoned the clinic and I said, ‘I’m having, I’m really having problems. I’m in the car and I don’t how to, you know, and I’m not really dramatic—‘, however they obviously thought I was being and the nurse I spoke to said, “Och, it’ll be fine dear, just go home and you’ll be fine.” So, I drove the rest of the way home and it kind of got it slightly more comfortable but I couldn’t go to the toilet, couldn’t pee. So kind of worked out how to do that, I don’t think I would want to describe on camera what I did but I did manage to work out how I would manage to pee, went to my bed, woke up at 4 o’clock in the morning and I’d wet the bed, which was just indescribable, I can’t describe what that felt like for me.

 

Janet is pleased that she was treated in a “holistic” way which included physiotherapy and pelvic floor exercises amongst other things.

Janet is pleased that she was treated in a “holistic” way which included physiotherapy and pelvic floor exercises amongst other things.

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I mean you go in and it’s not about them telling you what to do. They take a full history, they explain all how it all works, they were we did diary exercises about bladder and bowel and all that kind of stuff and then had a proper discussion about what the various options might be. It was much more of a holistic approach, so it wasn’t just pelvic floor exercises, it was diet, it was exercise, it was the pelvic floor stuff and I felt that I was being listened to. I felt that my views were valued and that we were working together to try and seek the best solution we could so that that for me works really well. I don’t want to be just told what to do. I want somebody who’ll talk me through what the options are and what the implications are of the various things that, that we might try so that for me works really well.

 

Janet had a good experience at a women’s health centre, where she felt listened to and the relationship with healthcare professionals was collaborative. In contrast, she’s had experiences of patronising care.

Janet had a good experience at a women’s health centre, where she felt listened to and the relationship with healthcare professionals was collaborative. In contrast, she’s had experiences of patronising care.

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I mean you go in and it’s not about them telling you what to do. They take a full history, they explain all how it all works, they were, we did diary exercises about bladder and bowel and all that kind of stuff and then had a proper discussion about what the various options might be. It was much more of a holistic approach, so it wasn’t just pelvic floor exercises, it was diet, it was exercise, it was the pelvic floor stuff and I felt that I was being listened to. I felt that my views were valued and that we were working together to try and seek the best solution we could so that that for me works really well. I don’t want to be just told what to do. I want somebody who’ll talk me through what the options are and what the implications are of the various things that, that we might try so that for me works really well.
 
The, the poorer examples are the people who just said to me, almost pat you on the head and say, “This is the best thing for you dear, so we’ll just do it,” and that was, that for me and I know for other people that’s best, that that’s just what they want, they want just to be told and it’ll be fine, that for me really doesn’t work so they were the kind of examples.

 

Janet suggests being cautious about online information and advice, because there’s “a lot of very crazy stuff out there about prolapse”.

Janet suggests being cautious about online information and advice, because there’s “a lot of very crazy stuff out there about prolapse”.

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I mean that’s a huge challenge because there’s a lot of very crazy stuff out there about prolapse. I mean I think there’s a, that some people have realised the, the gap that there is in the market really, the fact that there so many women who are struggling and who are not able to get the kind of help that they think they need. I mean some of the websites, I’m sure you’ll have read some of them, that that really, really crazy kind of stuff and I suppose what I’ve done is I go through it all, I read it, I kind of test it, ‘Oh that looks great’ and then go back to it two days later and say, ‘oh no actually that’s not, not good.’ And I mean some of it people look well as always in this situation, people are looking for money, people are suggesting that they’ve got programmes that will sort you out that and will cost you a fortune so, you know, but I think, I don’t know how you stop that, that’s a whole programme of the internet and the, people’s access to it and again, I’m not a great believer in people being anything unkindly but people kind of suggesting something that’s worked for them that you need to look into much more deeply before you kind of engage in it.