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.

I remember the one thing that my physio and it really-, my second physio said was, “Never underestimate the power of walking,” and it’s so true. So because I couldn’t run, I was just walking every, so I was on my, when I was on my maternity leave, was I still on my maternity, even my maternity leave I was walking, it was just nice just to get out the house. And obviously my maternity leave was through the summer, so I was able to do that. But, you know, it’s like, certainly it certainly helped me, and I tell people that a lot as well particularly if they’re in the same situation. It’s like, yeah, you know, there is a light at the end of the tunnel but you’ve gotta be, it is a slow process and you are gonna have rubbish days but you just kind of got to take it kind of steady and slowly and I think that’s the thing is when you don’t realise that your body can take up to a year to go until you’ve actually get, recover from pregnancy because you can’t see it, it’s not like a broken leg where you know you’d had like the plaster and then you have physio, then you’re kind of good to go. You kind of think you’re good to go and then you do something because obviously you’ve got the pro, hormones still in your body and they can react very differently with like less elasticity within the joints and things like that and people, you know, and I’m one of them, I put my hands up, you wanna go back to how you were pre-baby but you forget that you’ve kind of had a baby if that makes sense and obviously things, your body had changed, you’ve got bigger boobs, your hips are now wider. It’s, it’s getting used to that side of the change in your body as well as well as everything, and if you’re breastfeeding, again you’re gonna have the milk still there as well and that can affect, you know, not the, affect the exercise but obviously you’d need more of the supportive bra. You might not be willing to do high impact exercise. Again, if you’ve got the prolapse and you’re incontinent, you might not want to do and again it’s those kind of things that I think we need to be more aware of I think.

I’ve had more patients be concerned or, or worried about discussing their weight, and you know again we do that in a very sensitive way to say that this isn’t about the way you look, it’s about the impact it has on your, your medical, you know your, medically what this has an impact on as opposed to you know worrying about that. But often that can go hand in hand if somebody is particularly overweight, or they’re struggling to lose weight, and then that causes problems with intimacy, and, and they are, or they’re avoiding these sorts of things, and then that on top of any problems that they have with for instance incontinence during intercourse, you know that, that, that, that is also, it kind of spirals on for a lot of our patients who have one problem that they’re really worried, really concerned about, but actually then that has a knock-on effect. Or, being incontinent then isn’t allowing them to do certain exercises for them to lose the weight, and then that becomes a really, really difficult cycle that we recognise and acknowledge that it’s not easy to fix. It’s easy to have a discussion about, but it’s not easy to address.

But cystitis is a hard one to kind of like explain and to deal with, because sometimes people think like cystitis you can help it with cranberry juice and stuff, and drink lots of water, but they tell you with the chronic UTI not to drink cranberry juice, cos that can make it worse. And when you’re on long-term antibiotics they tell you not to drink loads of water because it can flush the antibiotics out, so it’s like they’re not actually doing their job in the bladder. So it is quite different, like things that people tell you to do when you’ve got a UTI that you can’t do when you’ve got like a chronic UTI. So, and like certain foods I can’t eat, spicy foods and chocolate, I can’t have and carbonated drinks, alcohol, I don’t think I’ve had an alcoholic drink for nearly two years.
 
Or chocolate, that’s hard when it’s Christmas, and you can’t eat chocolate. But it’s good in a way because if I was able to eat chocolate and I’d been off work I probably would have put on loads of weight. So it’s worked out well in the end.

Y'know, dietary stuff. I don’t massively limit my diet but even if you try and exclude the obvious things like spicy foods and y'know, acidic foods and anything with any caffeine or y'know, even just doing that it’s still quite restrictive and y'know, you can go out for a meal and y'know, want to have a nice time. But you feel that you’ve gotta be that person whose y'know, going through the menu, asking exactly what’s in something or if you don’t you get presented with something and then you can’t eat it. And y'know, that’s not me at all. I eat absolutely anything you put in front of me, normally. You know and you can’t really drink. I mean, I find the odd glass doesn’t make any difference. But certainly you couldn’t sort of just relax and enjoy an evening, y'know, with a few drinks with friends or anything.

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.

And then when I was pregnant I got very bad, badly constipated and couldn’t, I couldn’t pass it. I mean I did in the end, it probably took something like forty-five minutes and I really did what they tell you not to do and I had to strain to get it out. I also had to what they call splint which is where you use your fingers, well most people use their fingers, you can actually get a device to help support the vaginal wall to get the bowel moment out so and I think that just stretched the skin even more so now whenever, on like the groups that I was talking about, when women talk about their pregnant again for the second time, I’m always just like, “Right, okay look after your bowel health, you know, drink lots of water, keep moving. Like everyone says it but no-one really explains the consequences of like not doing those things, you know, midwifes will be like, “Oh make sure you do pelvic floor and squeeze,” and everyone thinks that’s about just oh a little bit of weeing when you sneeze or stuff like that. I don’t think it’s properly explained but your, you need to strengthen and protect your pelvic floor because it’s literally holding up your organs. I, I that’s just never been explained to, that was never explained to me so yes so keep regular, keep regular and drink lots of water and all those things that keep everything going.” I wish I’d known that because I could have actually potentially prevented that severe constipation which I’m pretty sure that probably is what made it worse second time round.

Anyway, so I trundled along and this consultant urologist, male was just brilliant. Made me feel very comfortable, did all the, all the looking at because obviously knows that I’d got bladder cancer but in fact he said, “You haven’t got bladder cancer, everything’s okay but because you had chemotherapy so early on it really has affected the lining of your bladder and all the and the tubes going into your bladder,” and he said, “What I’m going to tell you to do now is not something that what I would tell people because I’ve had, he wanted to, he suggested first that I had this a hormone thing to put inside me but then he said, “Well you can’t really have that even though you’ve had breast cancer a long time ago, I wouldn’t recommend it. What I’m going to tell you to do is something that a friend of mine regularly tells ladies to do is to take a fruit sugar called D-mannose which is really-” I, “Pardon?” Anyway, so he said, “I don’t normally do this, but I think it actually might help you.”
 
So, I thought, ‘okay’ so I have to track that down. So Holland and Barrett sell it which is very good and you get it online and he said, “Take as much of it as you like just to see if your symptoms will settle down.” So, I started taking this and some bio stuff for my tummy to try and neutralise the acid in my tummy as well and I started taking it and I didn’t have a UTI then for six months after I’d been on antibiotics every two or three weeks so I thought, ‘oh okay’ so I kept taking it. Then I didn’t have another one for another six months. I thought, ‘oh maybe it’s stopped, it’s stopped, it’s working.’ Anyway, it’s now two years, actually two years I haven’t had a UTI, and I’ve actually recommended this to obviously female friends who’ve had constant UTIs but also to a male friend who was really, really poorly with his bladder and it’s worked in various ways for all of them including this the male friend who was having problems.
 
So, I can’t believe that GPs don’t know about this stuff when it’s non-invasive, it’s a fruit sugar and it’s not an antibiotic so it’s not going to lower your ability, you know, to take on antibiotics and make your immune system struggle. I don’t know if I’m phrasing this properly really but anyway so that’s my story really after, after 40 years of that pain and horribleness, I now have had two years of, of no pain, no horribleness. If I feel that I’m getting a UTI I just take more tablets and it, and it goes away.

Well when it got really bad when I was peri-menopausal, that was probably the first time I’d started having to wear pads, which obviously I found at, you know, I was only, I don't know, mid 40s I think at the time which obviously I found not particularly nice. I didn’t, y'know, I didn’t think at mid-40s I should have to be walking around wearing pads, but there you go, I did. But giving up the caffeine and, and all of the various things I adopted did help [exhales]. I can’t do exercises where I jump. So, for instance, going on the trampoline is definitely a no, no. Star jumps are definitely a no, no. ‘Cos I’m quite sort of fit generally. I up until Covid, I used to go to the gym twice a week and I cycle and walk and all that sort of thing. So, walking it can sometimes be a problem because unless I’ve been to the toilet just before I’ve walked then I can get leakage when I’m walking. So, that’s, that’s a bit of a nuisance. Like yesterday, we were out on the beach and I had to nip up to the not very nice loo several times. So, yes, obviously, it has an impact every day. But not for some people. I know some people, people are much worse. So, y'know I do thank goodness it’s not as bad as it could be. But yes, it impacts on daily life, definitely.

I used to use pads, pantyliners I think they are called, but then I found myself like very uncomfortable because they will become smelly easily. So I stopped using them because, also because they make me sweat more in the area, so I feel like it’s not hygienic. My mum uses, for instance I knew about them because of my mum. But then over the years I just dropped them, I don’t like to use anything. If, when I am with my period it’s like I use pads of course, but it’s really challenging because I can get infections, it gets sweaty, so I prefer not to use anything. I just like change my clothes, working from home has helped, you know like I change my clothes whenever I need them. But when I am working from office, yeah, I cannot change my clothes. But for instance if I am going one day, if I am, I know I am going somewhere for one entire day, I am going to bring a couple of panties, like in my bag, just in case you know because I never know, and I don’t want to get all like smelly, so.

There’s, there’s and there’s also maybe the pads that we’re using, I know there’s the throw away ones but oh my god what’s that doing to environment as well. At least my ones would go in the wash but God knows how much my electricity’s going to be, I haven’t, I just shut my eyes to that but I’m now washing every day. I never did that before, especially living on my own, it’d be once a week and that maybe sounds disgusting but I’ve got enough clothes to do that. But now, you know, and it’s like I don’t, I think my kids must notice this when they’re staying with me, they’ll be saying, “What’s the washing machine on again for?”
 
But that’s my fear if they can see my pads out, my blanket pads outside and I’m thinking ‘oh what if the gardener sees them or-?’, that I’m in constant [ugh] anxiety that somebody might spot this or if I’ve got them over the radiator, they’re washed and all that and I’m thinking, ‘oh this is maybe not hygienic for drying’ but they take quite a while to dry for me then to go through two in a night and they’re expensive.
 
I mean they’re maybe too expensive for people as well, that’s a thing that I don’t know how older people, again especially women who are not getting their pensions they cannot afford this, all these things. This is an extra charge, you know, apart from the winter allowance, an allow- that some people need, nobody’s saying, “Well actually she needs, she’s spent a lot of money on incontinence pads”.

You know, I’m not gonna be fixed in the sense that I thought I was for when I was first diagnosed I was thinking, ‘I need to be fixed’ and now I’m thinking, ‘I’m not fixed but I feel healed and I feel whole again but that’s’ that’s thanks to finding a more holistic approach which is pelvic health exercises, Kegels, movement, the right kind of movement, strengthening the muscles around my pelvic floor, knowing how to safely move and stand and lift things and squat, not being afraid when I get a cough or a cold, you know, I was told, ‘Don’t get a cough or a cold’ which is terrible advice because we live in the world, we are going to get coughs and colds. I was told, ‘Don’t lift your baby,’ awful advice because you have to lift things and so I know, I have developed the tools and I and I’m stronger now but it’s taken a long time, I’ve cob-, cobbled that together from, from different people I’ve found mainly virtually because and I’ve finally found a really fabulous in-person physio but it’s taken some time.