Urology appointment

I’ve had bladder issues for a while now. I’m notoriously bad at keeping track of time in any context, but I know a few months ago, it had been at least a year as I had mentioned it to my rheumatologist. It seemed to be just another symptom I had to deal with. Things worsened over the year, and so recently I got a referral to urology to get to the bottom of the issues. My doctor was concerned that I was having such a tough time so young, as he would expect symptoms of this severity in someone much older. (Then again, that happens quite a bit with diseases like lupus, doesn’t it? Haha.)

Mainly my issue is feeling the urge to urinate a lot, but then when I actually get to a toilet, nothing comes. Sometimes I am there for an awful long time trying to go as my bladder feels very uncomfortably full or sore, but it’s often just a little dribble every few minutes, or nothing at all, or I finally manage to go after feeling like I can feel the urine inching along very slowly along the urinary tract. Often, when it does come, it’s in spurts rather than a steady stream. When it flares up to its most intense, I can void fairly small amounts many times an hour, probably six or seven, so not as severe as I know some people with bladder issues have it, but very frustrating as I am dealing with the discomfort and pain of a full bladder all the time and can’t relieve it. Some TMI perhaps: I keep a bucket upstairs during the night for times when I’m going so frequently; it’s not easy for me to go up and down the stairs anyway, never mind so often. It’s very hard trying to get to sleep as well when you feel you need to pee so desperately. I’ve had many urine tests but they all come back clear.

I finally visited the urologist yesterday. I had been afraid that when I went, things wouldn’t be too bad (as can often happen when you have appointments for symptoms with a disease that can vary a lot from day to day), but actually, it was even more ridiculous than usual! I was to do a flow test before seeing the urologist, which should be a “simple” thing of peeing in a special toilet that can be moved up or down as you need it, and you can use a commode-style seat over it if you need. I spent about ten minutes in there the first time, before telling the nurse it just wasn’t happening, although I’d been happy on the way up because I felt like I needed to go (and hadn’t been since the morning). She gave me some water to drink as it’s not too rare an occurrence that someone can’t go. I had literally eight plastic cups of water, spent about another 15-20 minutes across two more trips in the toilet, and still nothing. I was meant to have an ultrasound after the flow test to see if any urine had been retained.

The nurse was great, and she asked the urologist if he’d see me now without the flow test results. He did, and did an ultrasound anyway, which was pretty uncomfortable pressing down on a very full and tender bladder! That and my intake/output chart didn’t bring up anything particularly abnormal. He explained to me a few things he suspects might be the case, such as bladder stones. I guess he thought it was reassuring when he mentioned cancer to say that he thought it unlikely as I’m young and have never smoked, but to be honest, it hadn’t even crossed my mind so it was a bit unnerving to have him mention it in the list of possibilities so casually. (A colleague of mine was recently diagnosed with cancer when no one was expecting it to be the result of the investigations, so it’s quite fresh in my mind!) However, both I and the urologist are pretty convinced it’s interstitial cystitis. As it’s an inflammatory condition, it is comorbid with various other autoimmune diseases, including lupus, of course, as well as some secondary conditions I have, such as Sjögren’s syndrome and IBS. It fits my symptoms and seems the most likely culprit.

The urologist doesn’t want to start me on any medications for my bladder yet until I have a cystoscopy to see what’s going on. When I go to the hospital for that, I will have the flow test repeated and finally have the ultrasound to check for urine retention. I’m hoping we get some answers from the cystoscopy, which I’m sure I’ll blog about at the time. The urologist was fantastic and very reassuring, including patting my hand, haha! Happily, I will get to see the screen as the cystoscopy is done, which is perfect for an anatomist, right? 🙂

Anyway, currently I’m off to try to pee, haha!

How I’m finding things with my motorized wheelchair

Getting a motorized chair has been the best thing that has happened to me for a while! Being able to go out on trips and outings alone without having to rely on family members to drop me off, pick me up, push my chair, is just … amazing, to be honest. I forgot how much I’d come to rely on others to get out of the house and having regained a bit of freedom has felt really good.

Of course, I still do rely on my family but it’s not a terrible thing. Like many disabled people, I do have many moments of feeling that I’m a burden on family, even though they are happy to help. It’s just nice that if I fancy going to the library, for example, when I’m home alone, providing I have the spoons, I can go without having to wait for transport and a guaranteed pick-up.

This week I started my Masters degree in biomedical science, and without the motorized chair, I simply couldn’t have done it at all. I commute about 60 miles, and as my twin sister, who is my main caregiver, works, then of course she can’t be around for me all the time. I was managing to volunteer on my own using the manual chair (with my mum dropping me off and picking me up at the bus stop), as getting off the bus at the hospital where I work and getting into the department is all flat and fairly smooth, but I was still doing more damage to my shoulder by propelling myself. Getting myself around the city for uni was simply something that couldn’t be done.

With the motorized chair, I have been managing much better than I’d imagined, including having early mornings and 7:00am trains. To be able to get about and do things without so much struggle and pain is great and I’d forgotten what it was like, to be honest. Even when someone was pushing my manual chair, it quickly became very uncomfortable and the pain after a full day in it is unreal, but the motorized chair is much more comfortable for quite a long time.

Of course, there are still access issues, because, you know, that’s how the world is. Some of the positives are that I’m managing on the city buses, even if there’s not a lot of space to get round the corner past the driver’s booth, nor to maneuver into the wheelchair space if the bus is busy, but actually I think I manage this better on my own than I did in the manual. The train service in Scotland is pretty impressive compared to stories I hear elsewhere; I only have to book 6 or so hours in advance for assistance, and actually most of the time, it’s o.k. to just turn up at the station and arrange a ramp. The staff have been excellent, and commuting isn’t turning out to be as frustrating as I’d thought.

Things are going well at uni too, especially as the new buildings of my faculty were specifically designed with wheelchair access in mind; the corridors are extra wide, the lab benches are adjustable, etc. I have a campus map with accessible routes and entrances to buildings, although on my first day I did have a chair lift that wasn’t working–honestly, it’s not even a surprise to me anymore, to be honest!

Anyway, I just wanted to say I’m getting on well. Different people have different needs and preferences, but with my conditions affecting my upper body as well, getting motorized has been the best option for me and I have no regrets! (Well, maybe I regret the heightened electricity bill from all the battery charging! :P)