- 5 years ago
- Wedding: October 2014
Regular bee using my Anon account. I’m hoping that maybe some of you super intelligent people will be able to help me with a problem I’ve been having for about 18 months now, or at least offer potential suggestions?
Since September 2012 I have been incontinent. When it initially started, I was treated three times for a UTI, with three courses of antibiotics. This was not like any UTI I had previously had, as there were no symptoms other than the incontinence. Once the UTI had been measured as cleared up, the incontinence remained. The incontinence is basically a little trickle, of varying degrees, happening randomly. There is no urgency, there is not massive amounts each time, although it varies, and it happens regardless of how full my bladder is at the time. It is definitely not vaginal discharge, as my discharge tends to be white and chalky/creamy, and also it definitely smells of ammonia. I have seen three different specialists – two urologists and one uro-gynecologist. All three of them were stumped, referred me to specialist nurses who were unhelpful.
I am in my mid-twenties, never had kids, don’t smoke, don’t have diabetes, am maybe a smidge overweight but not much, and when this started I was at the top end of healthy BMI, but still within the boundary,and I have IBS which I don’t take medication for, it just sort of sorts itself out after flareups. I’m on the contraceptive pill, Mercilon, and had been for about a year when this started.
Tests I have had done:
– Urodynamics – testing for stress incontinence, retention of fluid by the bladder, if the bladder muscles were ‘spasming’. These came back clear and normal – no issues with my pelvic floor, no issues with my bladder muscles, high bladder capacity and emptying of bladder fully each time (save for about 100ml, which I was assured was normal, and no bladder would ever be totally empty).
– Pelvic Ultrasound and Kidney Ultrasound – testing for cysts or abnormalities which might be pressing on the bladder or similar. Came back clear.
– Blood tests for kidney function x 3 or 4 – all came back clear.
– Camera up my urethra to check for bladder scarring – all clear.
– Pee-log, where I had to pee into a jug for a week and measure how much and how regularly I was peeing, and how much and how regularly I was drinking. This came back clear. They made me do this three times, the second time because the nurse ‘preferred her version of the form’ and the third time because the new nurse hadn’t looked back through my file to check whether it had been done before.
– CAT scan to check for fistulas or other unusual connections from the bladder, possibly resulting from the exploratory laparoscopy followed by a series of 3 or 4 UTIs within 12 months about three years ago – all clear, nothing unusual found, although the IV dye used made me wet myself.
The consultants have basically given up, I was referred to two specialist nurses. The first one I think regularly deals with older patients who have had children. She told me to stop drinking coffee and tea (I don’t drink them anyway), to avoid orange and tomato juice (I’ve never had problems with orange juice before, don’t drink it often nowadays, and I’ve never touched tomato juice), that I was relying on the incontinence pads so that was why I was wetting myself, and that all I needed to do was pelvic floor exercises.
I got the impression that she expected me to struggle with the exercises from the way she was speaking, but I never did, and the Urodynamics had shown that the issue wasn’t to do with my pelvic floor anyway. I’ve always had good control over that muscle, ever since I was a kid.
I also know that I’m not ‘just imagining it because I’m wearing the pads’ as I’ve tried to go without on a number of occasions, with mixed results. I also know it isn’t alcohol-related as one doctor suspected, as one of the successful days where I went without a pad, I had a friend over for movie drinking games. However, when I tried again on a day where I didn’t drink, I wet myself.
The second nurse was much more helpful, and explained that the fact that I’d been going to the toilet so much in reaction to wetting myself was training my bladder into bad habits, and to try to hold for as long as possible. This has helped a lot in terms of my routine – at one point at the start of this I was getting up 5 or 6 times a night because of it, but now I’m getting up once a night, and sometimes not at all. Prior to this starting, I rarely woke in the night to go to the bathroom. This nurse also wondered if perhaps this was psychologically based and referred me to the Gynecology Services Counsellor.
At the time this started I will admit I had been suffering with a lot of up-and-down days, it was about two weeks after FH proposed which I had got very anxious about, and was literally two days into my new job, but whilst I was nervous about it my new job was actually considerably lower pressure than the role I was leaving, by like 90%. A combination of moving house and seeing the counsellor has really helped me become more relaxed and less anxious, but I am still having these problems, and it doesn’t always occur at times when I am stressed or anxious, it’s ALL THE TIME. I can be having a really lovely relaxing day, and it’ll still happen. (And re: pelvic floor related anxiety, the exploratory laparoscopy was because I was suffering from pain and tightness during intercourse following a killer yeast infection, I was given dilators to use to try and stretch myself, and then when those didn’t work they operated to see if they could see another cause, and then I was referred to the psychology unit where work there helped me to overcome it. So previous anxiety-influences on my pelvic floor have been more extreme in the other direction – i.e. tightening – rather than being under-effective)
Both the nurses then basically said “We’ve got no idea what’s causing it, neither have the consultants, so we can’t help you any more” and sent me back to my GP. Because of my house move, I had to switch GP surgeries, and my old doctor was really great and driven at getting this sorted, but the last time I went to see my new doctor about it she said “Well, it looks like they’ve done everything, I can’t think of anything else it could be.” The second nurse suggested it might be hormonally related, but when I mentioned this to the GP and suggested changing my pill, she said she didn’t think it would make a difference.
Other notes which are possibly not relevant but for the sake of finding an answer I’m sharing in case they are:
– prior to this starting I had on two occasions wet the bed in my sleep as an adult. Once was when I was 19, and another was about 6 months prior to this starting. Both times I was ill, extremely tired and in a very deep sleep, and in both times I had dreamt about going to the toilet. Since this has started, I’ve been regularly dreaming about going to the toilet, but waking up and going rather than wetting myself.
Bees I’m really hoping you can help me – I don’t want to have to wear an incontinence pad on my wedding day. I’d hoped not to have to wear one whilst wedding dress shopping to be honest, but that ship has sailed. I want to not worry about going swimming, or going to the beach again. I am fed up of paying out for incontinence pads. If anyone has any suggestions about routes I haven’t tried, or has been through anything similar, I would really really appreciate the help.