Kerry
Kerry has a grade 2 rectocele (prolapse of the rectum into the vagina). Her GP referred her to urogynaecology but she is still waiting for an appointment 11 months later. Kerry has paid for private physiotherapy and this has helped her get “back to a point where it’s quite liveable”.
Kerry is a school improvement consultant. She is married and has two adult children. Her ethnicity is White British.
Condition: pelvic organ prolapse
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Kerry has a grade 2 rectocele (prolapse of the rectum into the vagina). She first noticed the prolapse when she was out for a walk and had a feeling of heaviness. The next day, she felt a bulge into her vagina during a bowel movement, which made her “really panicked”. She thinks that she had had quite a mild prolapse for some time, but then it “suddenly made this jump to the next stage”. Kerry went to see her GP who examined her and confirmed it was a rectocele. The GP “went straight to surgery” in their suggestion of treatment, which Kerry was uncomfortable with, and referred her to urogynaecology. She has been waiting 11 months for the urogynaecology appointment. She would like to discuss pessaries at the appointment, and expects surgery will be talked about too, although she adds that this is “still not necessarily something I want for my body”.
In the meantime, Kerry has been back to her GP to ask about physiotherapy, pessaries and oestrogen cream, but these requests have always been refused or dismissed. Eventually Kerry bought some oestrogen cream herself from a pharmacy, which helped, and her GP agreed to prescribe it after the third time of Kerry asking: “I shouldn’t have to fight like that”. She has also paid for private physiotherapy and, in combination with other exercise and being careful about diet, this has allowed her to get “myself back to a point where it’s quite liveable”. Kerry and the physiotherapist have worked through a six week program on hypertensive pelvic floor, and she has learnt about internal massage to locate trigger points. Kerry has also bought some different types of vaginal pessaries and she has had to insert them herself; she wasn’t able to find one that works for her and stopped trying new types because of the expense.
Although Kerry knew prolapses were quite common in women of her age, it was a “bit of a shock” when she developed hers. She is physically active and was “quite aware” of her pelvic floor health. It left her feeling a “bit of a failure”, and that it was unfair that she was doing all the “right stuff” and practicing yoga. Kerry has some ideas about the causes of her rectocele, including having had two “very big babies”, an episiotomy (a cut in the area between the vagina and anus, called the perineum, during childbirth) in one birth, and “no physical check-up” afterwards. She also has coeliac disease and thinks that the symptoms (“you cycle between chronic constipation and massive diarrhoea”) contributed to developing the prolapse over the years before diagnosis.
Kerry has looked online for information, but considers this a “mixed blessing”, and she is part of several online support groups. The groups are “sympathetic and supportive”, and people try to share positive news too, but Kerry has noticed it becomes “so repetitive” as new people join the group and ask the same types of questions.
Kerry would like to see some changes to services for prolapse, including the option for patients to self-refer to physiotherapy, which isn’t available in her local area. She would also like for GPs to give more advice on lifestyle and exercise when they see someone with prolapse, especially if the person is likely to be waiting many months to meet with a specialist. Kerry’s message to other women with prolapse is that things can improve so that you can manage and live well, and that “it’s not the end of the world”.
Kerry has stopped some types of exercise activities, but she continues with others and has found using Nordic walking sticks helpful at times.
Kerry has stopped some types of exercise activities, but she continues with others and has found using Nordic walking sticks helpful at times.
I did, I was using a rebounder, I don’t know if you know what a rebounder is, so like a little trampoline that you exercise on because that’s very joint friendly and it’s very good for the lymph system and I’ve had to stop that completely which I’m sad about but again I can’t risk making things worse so yeah. But everything else, we walk a lot, it hasn’t stopped me walking. I think very early on I was I used the Nordic walking sticks sometimes and they, they provided quite a lot of support because they lift you through the core when you walk that push with sticks and again I’ve pretty well stopped that but I know they’re there if I have a bad day and I want to go for a walk, I can use the sticks. We cycle a lot; the cycling seems to help. Swimming is fine. So, there’s plenty of exercise that I can do.
Kerry describes the process of attending the first appointment with her GP and finding out what her symptoms meant.
Kerry describes the process of attending the first appointment with her GP and finding out what her symptoms meant.
I really didn’t know what it was and when you go on the internet, you go on the NHS website it says, you know, sometimes these symptoms can be caused by vaginal atrophy, can be caused by vaginal dryness, can be, bl-, bl-, there’s a whole long list of things it can be so then I want, I want somebody to actually knows about stuff to tell me which one of those things it is.
Because we’re in the pandemic, so the first-, what they do first of all is they give you a telephone call and that was with a man, a male doctor and I found that quite difficult to talk to a man about it. And but he said, he was lovely, and he said, “Oh yes, come down to the surgery and we’ll get you booked in,” and they had booked me in with the female GP which was much better and she was lovely, she was just very matter of fact about it. She, you know, as soon as I lay down and you get into that sort of smear position, you know, with your legs apart and your ankles together and she said, “Oh yes I can see it.” Well, that’s not what you want to hear [laughs]. But yeah. And she did an internal examination and she said, “Yes” and she said, what sort of prolapse it was because at that point I had no idea and what stage it was so I think both of those things were helpful. But once you’ve got some information then you can go away and you can read things and you can look at things.
Kerry worries that some exercises could make her prolapse worse, so she has sought out different ways to stay active.
Kerry worries that some exercises could make her prolapse worse, so she has sought out different ways to stay active.
I’ve always been quite active. I know that if I’ve very physically active, like we do a lot of gardening, if I’m very, I do a lot of lifting and shifting of sort of digging ground that I feel it the next day in terms of the prolapse, that’s not always the best thing for me. I did, I was using a rebounder, I don’t know if you know what a rebounder is, so like a little trampoline that you exercise on because that’s very joint friendly and it’s very good for the lymph system and I’ve had to stop that completely which I’m sad about but again I can’t risk making things worse so yeah. But everything else, we walk a lot, it hasn’t stopped me walking. I think very early on I was I used the Nordic walking sticks sometimes and they, they provided quite a lot of support because they lift you through the core when you walk that push with sticks and again I’ve pretty well stopped that but I know they’re there if I have a bad day and I want to go for a walk, I can use the sticks. We cycle a lot; the cycling seems to help. Swimming is fine. So, there’s plenty of exercise that I can do, yeah and everything else, yeah, it’s not impacted.
Kerry has pelvic organ prolapse and coeliac disease (an auto-immune condition where the gut is damaged from eating gluten). She manages her diet to avoid constipation worsening her prolapse symptoms.
Kerry has pelvic organ prolapse and coeliac disease (an auto-immune condition where the gut is damaged from eating gluten). She manages her diet to avoid constipation worsening her prolapse symptoms.
I’m vegetarian anyway so I eat, my diet is very, very vegetable-based but I find that if I don’t, if I don’t get at least my five portions of fruit and veg every day and we’ve really both of us have cut back massively on processed food and I guess I haven’t eaten white bread in a very, very long time, not even the gluten free white bread. We don’t eat a lot of carbs. We do eat a very high fibre diet which keeps the bowels very, very open. I eat quite a lot of fermented food so yoghurts, I make my own sauerkraut those sort of things. They all seem to be quite important in my gut health. If I have and I can do it, you know, I can have a day where I eat pizza and, you know, those sorts of things but I have to make sure that I really probably eat a handful of prunes before I go to bed. I take my magnesium citrate every night anyway so you know, just to make sure that the stools stay soft and that it keeps me very regular. I don’t, what I don’t want is to get constipated.
Kerry would like for it to be an option to self-refer to physiotherapy for prolapse and for there to be more emphasis on non-surgical treatments.
Kerry would like for it to be an option to self-refer to physiotherapy for prolapse and for there to be more emphasis on non-surgical treatments.
I think some sort of self-referral to physio. I don’t need to see a surgeon at this point. I’m happy to wait for surgery. I don’t even know if I want surgery but self-referral to a specialist women’s physio who’s got the expertise to help me with the pessaries, to tell me whether or not I need the oestrogen cream, you know, just - and they’re such low level things. Surgery’s a huge expensive thing. I don’t understand why the NHS isn’t prioritising first level care really, I really can’t get my head round it and I think I should have had access to that within six weeks really as a minimum and it shouldn’t be, I can self-refer if I have a knee for a foot problem, for a wrist problem, for a hand problem, I can go and I can be seen within two weeks. Why can’t I self-refer for a prolapse? It just doesn’t make sense to me, but they won’t take the referral.
Kerry says she is fortunate to have been able to afford private physiotherapy, but knows that this isn’t an option for others.
Kerry says she is fortunate to have been able to afford private physiotherapy, but knows that this isn’t an option for others.
I think we’re fortunate in that we’re well off and that I am able to go out and do these things. I think if we’d been, if I was [sigh]…if I was on a much lower income, if I was on the minimum wage, if I was on Universal Credit, if I was on any of those things, there would be no spare money and I would be sitting here with this thing going on in my body that I might be able to, I might have a phone that lets me access the internet, I might have enough data to get on, on the internet and have a look at stuff but actually I probably wouldn’t, I would be dependent on my absolutely rubbish GP giving me support and advice and waiting, still waiting for that referral to the hospital. 11 months and in that time because I don’t know what I’m doing, things would have got much worse and I would be a lot more miserable than I am, you know, it’s, it’s not right really.
Kerry would like to be given thorough information about exercise so she can make an informed choice.
Kerry would like to be given thorough information about exercise so she can make an informed choice.
We’re very willing to do exercises, you know, what I hear from friends who are GPs is that they don’t bother prescribing or recommending exercise or diet because people don’t do it but that isn’t my experience and at least offer me the opportunity. So yeah, you know, give me the information, let me make informed decisions, give me simple stuff that I can do for myself to help myself while I’m waiting, particularly when the waiting times are going to be, you know, 11 months plus.