Urogynaecological conditions: prolapse, bladder and pelvic floor problems

First of all, I’d like I would like a, a proper diagnosis. Whether I have to have any investigations to have that done, I would prefer to have investigations, I know many of them aren’t very pleasant, but I’d rather really try and know what’s going on. Whether that will happen or not I don’t know. I hope someone will listen to me and really listen to my concerns about my previous experiences, and treat me as someone who is, if you like, what they call an ex, someone who’s experienced in these conditions, and, and knows their body. I hope I get someone who’s sympathetic like that, and I do hope I can get a proper diagnosis, and it’s from, until I get that I won’t know what I need done, or if anything can be done. And I hope that would happen speedily, well I think that won’t happen speedily. So, I mean I would consider going private maybe but for some of the diagnostic tests.
 

I am optimistic, but I’m also realistic on my chances of having a full recovery. And I’m under no illusions that I will get my life back to how it once was because I don’t really much want that to happen. I’m looking forward to the outcome where I’m in less pain. I have been made aware that my incontinence could be a lot worse. And I have replied to that as, “I personally don’t care if the incontinence is a lot worse. I can live with that. But I can’t live with the level of pain I’m in now.” I am feeling optimistic that because this long arduous journey is about to come to an end. That’s how I feel. And have closure as to why over these many years I’ve been so unwell with fatigue, allergies, great pain, and so much more. There’s been a lot of unexplained symptoms I’ve had. Although some can be attributed to things such as osteoarthritis and other conditions that I’ve got, some cannot be.
 
Once I’ve completed the next phase of finding out this, getting this hopefully sorted. I can put it down, put to rest, live with what I gotta live with and get on with the next chapter and that’s how I sort of compartmentalise it. So, it’s healthy for me. I might not work for anybody else, but it works for me.

My biggest worry is like kidney problems or things like that, and the long-term effects of being on this medication. You know, it’s, it’s great that it’s solved a lot of problems associated with my condition, but it’s that ‘do I want to be on it for the rest of my life, until I am an old woman? What are the other options?’ I suppose. I suppose my one option would be to go back to how it was or not be on anything at all. But then I go back to square one again and having all the symptoms again.

And I know it, it probably sounds, it’s like a silly thing to say because I’m sat here crying for the last hour whenever, but I feel the best I’ve ever felt because I’ve got facts and I understand what’s happening, you know, I will always manage my prolapse. Even if surgery repairs it, it’s likely to come back, particularly when I menopause and I just think knowing that and knowing the things that will help and hinder, and hopefully soon living life freely. Not being so frightened that you might, you know, something might pop or whatever, that you can’t have fun. You know, I’ve got a three-year-old and I’ve got a one-year-old and I want to bloody enjoy them. I’ve gone through literally hell to get them here. I never thought I’d say this, but I want to go back to soft play.
You know, I want to do, I want to take them to the seaside and run on the beach and be able to do all these things that I just haven’t been able to do. I don’t want my little girl to say, “But your operation, mummy,” or “Are you better yet?” and all of these things, you know.

So, what does the road ahead with prolapse look like for you?
 
I think it’s all, well, it can kind of look terrifying. So, I kind of like if I Googled just like sometimes as if it’s just gonna get worse. It’s gonna get worse as I go through the menopause. There’s like horror stories of the internet. Imagine me getting worse I feel like kind of like desperately hoping that there’ll be some kind of like miracle, surgical procedure that they’ll suddenly discover or have some kind of breakthrough with that, you know, will kind of put everything back that I never have to think about it again. But however, I guess, you know, other days I think well, I’m seeing people on Instagram that’s been a big kind of like beacon of hope at times, where they’re like, I need to lift ‘cos I need to get strong, ‘cos if I’m going through the menopause or whatever kind of life throws at me, you know, regardless of having a prolapse, I need to live my life. And so, I guess they’re the kind of people that I tend to look towards and think, “yeah, I can do that too”. There’s no reason I shouldn’t be able to.
 

I kind of had entertained ideas of maybe, before all of this, kind of thought I might like to have more than two children, maybe three. Fairly categorically don’t think I’ll have more than two now because of the cumulative effect of pregnancy and childbirth and I don’t think it would be, I I don’t think I could cope with this, times three basically. I will have a second child I hope, I hope but it will I I feel I feel like there’s a big risk attached to it, there’s a massive risk that things could get worse for me and I remember how down I felt at the beginning with this, after this birth and I know that there’s a risk that things could happen again and I will feel like that again and then the risk that things might not get better and that does worry me because I don’t want to set myself up for not being able to look after babies , you know, because I’m feeling so down about things and upset.
 
I then also know that the chances of things happening again are low and I know who to ask for help now, I know how to minimise the risk with, yeah exercises and physio and things but the mode of delivery is the biggest thing for me so I don’t fully know whether I would go for a vaginal delivery or a caesarean. I’m weighing up the pros and cons of those, it’s really hard for me at the moment. So, I think I’m gonna have to wait and see whether I make a really, really good recovery from this or not as to whether I opt for a caesarean or not and yeah it has impacted the number of children I think I’d have and how I would have them definitely.

But I don’t know, like obviously it’s early days anyway but I can also imagine that it’s not necessarily a good idea in terms of I wouldn’t want to go through the whole pregnancy just being worried that the prolapse might kind of-, particularly if I’ve been able to rehabilitate. Like, say if it’s this time next year, I’ve rehabilitated it really well, like it’s still a bit there but I’m really fundamentally asymptomatic, I think I might be then quite anxious during a pregnancy that my symptoms would return, or I’d make things worse. So, I might not feel comfortable kind of opening myself up to that risk and of course the risk of further birth injury but I might, so I don’t know. I might have the opinion of ‘actually no, I’ve really got to know myself in a kind of pelvic floor capacity. I know how to use it much more effectively, I know that I need to relax it. I know that I need to engage it here. Or I know that I can keep strong during my pregnancy’, and maybe I’ll just have a scheduled c-section and then do all of the same thing again but with my abs rather than my pelvic floor [laughs].
 
So yes. I definitely had some dark teary moments where just the thought of not being able to carry another child played very heavily on my mind and I’m not really quite there anymore, but it’s still not necessarily something that I would open myself up to.

I wouldn’t even know where to go to find out the reality of trying to have a, go through pregnancy with a chronic UTI. And, and the medication impacts on that because, you know, I don’t want to be, on the one hand I don’t want to limit the medication that I can take because I kind of feel that I need to throw everything that I can possible to get rid of this UTI. But, at the same time, there’s no way I’m going to be taking something that would harm any unborn child.