Urogynaecological conditions: prolapse, bladder and pelvic floor problems

But I’d just believe there is a massive, massive gap in information. I just try to contribute to everything cos you know, and I’ve tried to write, I could write them, I could write them myself, and I could write them so somebody would want to read them. Because sometimes when people, when you see leaflets and that at the, in the hospital, whatever it’s, they’re so formal, and you know and it’s like oh you know, paragraph here, paragraph there, but you know actually things need to be aimed at all abilities, you know because we are all different, and you know and we all have a different understanding of things. Cos, I think if you make things visual as well, you know then you know somebody will want to read that, read it. You know, and continue to read it, then, and it’s not just the reading, it’s the retaining it, and understanding what you’re reading.

I went to see the physio and as I say, she was superb. And she helped me with the stress incontinence, ‘cos at the time I saw her, I’d got this awful cough and the stress incontinence was really bad again. She really helped with the exercises when one wasn’t working because when I started doing the pelvic floor exercises, it was making the prolapse feel worse. It was making it feel more uncomfortable. So, she adapted the exercises for me so that, the ones I did were more abdominal exercises because the pelvic ones were hurting me and she was brilliant, I have to say. But that is the first time I think in the, in the entire journey as you call it that I had seen anybody about it at all or been given any advice about it at all.

The information was verbal so, you know, they told me information about it but it, yeah it wasn’t, it was still a bit vague if I’m honest but I don’t know whether when you suddenly are told that you have got a prolapse you don’t, I switched off I think in the appointment because all that’s, all I could think of is like, ‘Oh my god, everything’s gonna fall out, I’m gonna now start weeing myself. I’m gonna like-, what do I need to do?’ Oh my god am I old? Am I broken?’ you know, and I think there wasn’t, I’m not gonna say old school but there wasn’t really like leaflets, or anything given or anything or they didn’t say, like they didn’t kind of take you towards a website or a resource I suppose.

The NHS option was controversial because the lead person in the department was known to be pro-mesh, she’s very much an advocate of the mesh and she doesn’t buy into any of the papers that have been written over quite a number of years, about degradation of the mesh due to bacteria and infections within the body. So we had a long discussion about what they could offer and yes she confirmed that there was mesh that had eroded in the lower part of the vagina, it should come out, but she offered me an incision, and she also asked me if I had sex life still, and I said well no, not really, and I asked why she asked the question. And she said that depending on my answer as to how they would do the surgery, which I don’t understand, but I assume they would just excise or trim and then just sew up but, it didn’t seem like they were [coughs] but they were not, they were not a mesh removal centre. She said they never removed the mesh, they said it was too high risk there were no known benefits, and if I had the whole mesh removed I would have stress incontinence again.
 
And then I went and saw privately the other consultant who was doing a lot of work into the mesh and it’s complications and was very experienced in removal, and listened to everything that she had to say, and I put that in with what I’d already been reading clinical papers, and I had to constantly look up the long words to see what they actually meant, and I really quizzed her about how the proceedings go and I wanted a step by step account of how she did it. I wanted to know how many she had done, I wanted to know how many times she had severed a urethra or a bladder, how many times she had caused nerve damage and effectively caused issues walking and with quality of life and increased the pain.

And there are alternative tests, diagnostic tools that can be used which aren’t dipstick, which isn’t a culture, which is a microscopy where they look at fresh unspun urine under a microscope and look at the level of your white blood cell count and the level of shedding so when you look in into the, into your urine sample, you can see it. You can see all of the lining of your, your bladder, coming off because your innate immune is trying it’s best to shed. And it really only does that if you’ve got an infection or if you’re pregnant because your, when your body is trying to make sure when you’re pregnant that you’ve kept safe so it sheds the lining. And yeah, they just don’t mention about the alternative test that you can use and they don’t mention about the possibility of the tests that are being used being inaccurate and so it really kind of, stops any exploration, you know. If you’re a patient and you’re looking at that website, you think ‘ah, well there’s nowhere else for me to go.’ Whereas at least if the website said, “We acknowledge that there are problems with testing. We acknowledge that there are, that there is a diversity in opinion around what these symptoms could be and what the condition is”. I think that would really help people that that look for help on the NHS website and currently aren’t getting it.

I had no idea until somebody, the doctor said to me, “You’ve got a rectocele,” and I said, “Oh, what’s that?” ‘Cos, I didn’t have any symptoms. I went to her for something else, and she told me and she said, “I’m going to refer you to the physio,” which she did, very nice physio who then explained to me a bit more and got me to do certain exercises and sent me away to practice them. But at that time I had no symptoms at all, so I don’t think it really went home. And I did do some pelvic floor exercises, probably not enough, but then gradually the symptoms did start and this feeling of something sort of falling down, pulling down, and then I looked into it more, through the internet mainly, and realised just exactly what it involved. And then it was, it was like a big emotional shock, it really was. Not, not that I felt any less a woman or anything like that, it wasn’t that, it’s just, “Oh my god, I’ve got to live with this, it’s not going to go away.”

Oh the best way to find out is to look at, it’s a two-pronged approach, look at reliable sources online, so wherever you live in the world look at your, in the case of if you’ve got something similar to me, look at your local, you know, your country’s menopause guidelines, the most recent version of, not the older ones, because guidelines do change as research studies show more generally so that’s really important. If you look at any research studies you have to learn how to read them a bit it’s not something that’s very easy to do, quite often the summary is the best thing to look at, but also look at the date of the research study, look whether it’s peer reviewed yeah. Sometimes it’s better to look on a reliable website that will give its own summary version, you know, of research studies. I mean in the UK it’s the NICE menopause guidelines, you know, it gives the basics.
 
But being given the support online from strangers can really, really help and it can help us to be more knowledgeable and know what questions to ask when we go and see our GP or gynaecologist or whoever we see.

I just looked at the symptoms and then as you do when you’re looking at Dr Google, you follow each link and then you end up with a group of links so going from migraines to menopause to hormone replacement and then you, you eventually find a site that’s not profit making, that’s always key for me because when you go onto Dr Google a lot of people on there are, are selling things, this is all self-promotional money making. But the menopause, yeah, I won’t mention names but there were some sites specifically that were charity-based government funding The Menopause Society and then you can get links from there for people that do give free advice. It’s not for money, its charity, non-profit making, and I found some good, very good sites that had got some extremely good information on them and that’s helped me immensely.

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.
 

My close friends that I see locally are amazing. They always, whenever they see me they always ask, y'know, we have a little running joke with one of them, ‘cos she knows that I, as part of the treatment I, I write down at the end of every day a score out of ten. I know that sounds a bit barking, but because the rate of progress is so slow, it can be really useful to see that even though you have, y'know, ups and downs, that actually your general level is sort of getting better. So, whenever I see her, she, she’ll ask me what score out of ten we’re on for the day. I mean, I will talk about it, we’ll have a sort of five minute talk about that and then we’ll move on and talk about other things. But yeah, my friends who see me a lot are really are really supportive, so I’m really lucky. And I have, there’s a couple of ladies, locally that have similar conditions. In fact, I find it’s amazing, ‘cos I’m quite open and I, I do talk about it because I don’t want other women to be suffering in silence, basically. So, I’ve, and anyway, y'know I go to a gym where there’s maybe 70 members. I’ve already found five women who that have, in fact more than that who had some version of the same thing. And you think, well this is crazy like and most of them have just been dismissed or sort of got to a point where they can sort of manage, but haven't really been treated properly [laughs]. Yeah. But I think, ‘Well gosh, if that’s you know representative then this is a much bigger problem than people are talking about.’

Facebook is the place to go to find other people, other people suffering with the same condition as you are yeah it’s been really helpful. And they give you all sorts of different things that you can watch on YouTube, they give you links to information and yeah no it’s very, very helpful, so.
 
I’ve joined groups in, on Facebook but it’s, it is quite hard to remember what it was like when it was bad because the brain kind of blocks it out, so I’m feeling a lot better at the moment so that’s a good thing, you know but at the time yeah it was quite daunting. And I haven’t got any females in my family I lost my mum 12 years ago and then there was only my grandmother left and I lost her two years ago, so I’m surrounded by a brother, a dad and two sons so there isn’t really any women that I can ask for any advice on that kind of stuff anyway, and most of my girlfriends aren’t even close really to being perimenopausal I seem to be quite young and I seem to be quite affected by my hormones more than they are and always have been. So yeah it has been a massive learning curve and quite frustrating, you know, you go down one avenue and think oh no it’s not that, I mean for a while I thought it could be my thyroid and could be something else and, but no it’s all hormonal and it really does affect you, you know, don’t underestimate your hormones.
 

But also having friends you can talk to about this stuff does really help and for me, I’ve had a lot, I have friends from ‘prolapse land,’ I call it, which are friends I’ve made through Instagram and, you know, you can set up a private Instagram account and find women who are speaking about it openly and then ask them, ‘What’s worked for you? What do you think of this programme?” because you’re not alone and, and, you know, I think we, there’s a lot we can learn from each other and it’s a shame if we don’t feel we’re able to have these open conversations.

I there’s a Facebook group, basically just for people who are under treatment from one or other version of the chronic UTIs specialist. And it’s got thousands of members, thousands and thousands. And it’s quite helpful. I mean, it’s a mixed blessing because of course, what tends to happen is people go on there when they’re having really a bad time and then people move on when they get better. So, it gives you a slightly skewed perspective that no-one ever gets better which is not the case. But provided you sort of go into it with that awareness. I mean, it’s brilliantly helpful because y'know, you’ve got this whole pool of people who understand what you’re going through. And y'know, can, I mean there’s a rule that you’re not allowed to talk about medical dosages or anything like that, but y'know they can talk about other lines of enquiry they followed or they can talk about y'know, things that help them with their symptoms, y'know, not antibiotics but and yeah, so I think that’s a really positive thing. I think I’ve learned a lot through that as well that I wouldn’t otherwise have known.

Yes so that’s been a very big deal for me because I found people I can relate to and who can relate to me and it’s like, I’m not an odd one out and I’m not isolated and I’m not alone. There’s other people who have this problems and they feel the way I feel and like with my other friends I would have to explain things to them and sometimes they’d don’t get it fully believe and they’d just say, “But you can do this but you know, just do it,” But then if I speak to my chronically ill friends they just get it and then they advise me accordingly. I feel like that’s a big difference and then we can discuss, it’s like having your own little support group I guess, even if I don’t talk to an individual person, I can just post on my stories, like at my appointment did this, this is how my appointment went, this is how my tests results came, this is what I’m doing and then I see other people’s as well and it’s just really useful and then we talk to each other about our treatment options and things that we can do and it’s just been like, it’s nice, it’s just quite nice, even though it’s only over the internet and I don’t see them in person, it’s just nice knowing that I have found them there and I have, you know, people to go to when I need to and people that can help me out and I can help them out as well so, you know, it’s really nice.