Lupus cystitis confirmed (~Nov 2015)

(Whoops! I accidentally posted this as a “Page” in about November, haha, so here it is as a “Post”! I’m well overdue a general update as well, so I hope I get round to it soon. Probably my “symptoms” and “medication” pages need updated too, so I hope to do it after my upcoming deadline for uni is over with.)


I need to get better again at writing here. (I feel like a broken record saying that now!) Anyway last week I had my cystoscopy, and, surprising no one, lupus cystitis (interstitial cystitis) was confirmed. I’ve had quite bad luck all week last week (including getting stuck in a lift at uni when someone knocked against my wheelchair and the power wouldn’t switch on!) and so can’t say I was too surprised when the appointment had a lot of complications!

As I’ve mentioned before, my symptoms were mainly high pressure and pain in the bladder, but not being able to pee easily even then. Often it seems I can feel the urine inching along slowly before minutes later coming out. Often it comes in spurts and dribbles, or if the stream is strong, it will abruptly cut out and start again numerous times. It’s very difficult to sleep when your bladder feels full and painful and you can’t pee!

In the last post, I mentioned the problems I had at the last appointment doing the flow test and so I kind of expected similar issues. I got there and couldn’t go for the flow test, so as usual they gave me jugs of water to drink. I went to try a few times, staying in the toilet for a good 10-15 minutes each time to no avail, so came out again to be faced with more water. So far, so usual for me!

However, I think I had about a liter of water and still no result. The pressure in my bladder got high and I became very uncomfortable. A short while later, unfortunately it backed up and my kidneys were in agony as well as my bladder, I broke a massive sweat, was swearing, praying, and was nearly crying, tbh! The nurse asked the consultant how to proceed, and did the ultrasound anyway to check if my bladder was actually full. I can tell you it’s very uncomfortable having an ultrasound probe press down when you have half a liter in your very painful bladder!

Unfortunately it got to the point where there was no other option but catheterization. You’d think it wouldn’t be so hard just to go to the hospital and pee in a special toilet without much ado, but I guess the point I was there is because of bladder issues! They took me round to the recovery word and the nurse was amazing, even though she had a lot of trouble getting the catheter in and had to get a second nurse in to help–apparently the anatomy of my urethra isn’t that straight forward! (I had a similar issue when getting my ears syringed–the shape and path of my ear canals is an anatomical variant so the nurse had trouble getting to my eardrum!) The catheterization was painful at times, but by this time my bladder and kidneys felt like they were about to rupture so I didn’t really care about much else but the relief!

They finally managed to drain most of the urine–they couldn’t get it all because of the position I was lying in, and then after a rest I finally got to see my consultant! He was very reassuring as usual–he’s always very sweet to me. He too had trouble getting the cystoscope in, but thankfully he didn’t find anything overtly abnormal like stones, massive shrinkage, tumours. Unsurprisingly, the damage is from the lupus. They’re going to teach me how to self-catheterize to avoid the build up on my kidneys, which will damage them more. (Thankfully, the damage from lupus on my kidneys is minimal at this stage, with some proteinuria.) My blood glucose has also not been great, so he told me to keep on the lookout for symptoms of early diabetes, whose risk is increased by lupus anyway. I’ve had a lot of incidents with symptoms of hypoglycemia so I will be vigilant.

2 thoughts on “Lupus cystitis confirmed (~Nov 2015)

  1. People trying to force you to pee is horrendous. So often at the D clinic I would go in and not have a sample. Say you wake up at 5am and need to pee. I don’t think at 5am ‘bottle this for clinic’, I think ‘I’ll get a sample when I get up’ but body is like…you did that already. So you go to clinic and they give you glass after glass and you feel bloated as hell (especially if your bg is a little higher anyway) and then when you do pee you need to get it into this bottle. Now for those with a penis there is an advantage there but for me it is so hard. If you flow too hard you overshoot if you try control it you dribble too far away. Then you hand over a bit of a bottle and nurses are all ‘is that it?’ I TRIED! I want to be a kid D again when they gave you a wee cardboard….boat to pee in and then you poured that into your bottle. Kidneys and their needing to be tested are stressful. And rude.

  2. Pingback: My IC/cystostomy saga continues | Life of a Lupie

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