Interstitial cyctitis

[Thomasina79]

I have been diagnosed with this. I keep getting painful cystitis but urine dips come back as negative. Any advice? It’s a pretty miserable condition.

I had this in my 20s. It governed my life and was terrible. If you can get hold of a copy of Angela Kilmartin's Understanding Cystitis (I think?), this was useful.

I do think the bladder/urethra gets a 'memory' and starts over-reacting to any trigger and it's hard to break the cycle.

Dips often came up negative for me until I went antibiotic free for a few weeks, then I got a positive.

In the end though, I was put on 6 months antibiotics (a big weekly pill) and then just took one regular antibiotic (nitrofurantoin?) pill every time I had sex (which was the main trigger for me). About 5 years in, a new gp said this was now the recognised treatment for ongoing cystitis. (It may have moved on again since.)

I did also give up wheat for a bit having gone to a woo practitioner in desperation, and bizarrely it did seem to help with ongoing chronic symptoms. Good luck - it's a horrible condition.

I had this in my 20's and a friend has it now. I got mine under control when I was prescribed nitrofurantoin antibiotics. I was given a course and then a repeat prescription for when it came up, I actually only needed to take a few (it was quite contrary to the way you normally take antiobiotics and needing to complete the course) anyway it finally got it under control. I've had maybe 5 or 6 further cases of it in 25 years. 2 of which I would put down to childbirth and catheters. I did also make a couple of changes which helped - drinking plenty of water so that urine is not too strong and being careful about some aspects of sex. My partner used to use his penis in what he thought was a teasing fashion (sorry if this is TMI!) by rubbing it on my clit and then dragging it backwards from inside me to my clit. In reality, rather than being nice it was actually dragging over my urethra and irritating it. Anyway, I mention in case something is happening during sex that might be irritating your bladder or urethra.

My friend has got hers more or less under control with nitrofurantoin as well. She also has it on repeat prescription. She got a scan at hospital to assess her bladder and the consultant put the prescription on repeat for her.
I hope you get it under control. I well remember the misery and how debilitating it was.

Azo urinary pain relief tablets are really helpful to relieve symptoms. I got some off Amazon after a recommendation on a MN thread. Literally took 2 doses and a 3 week long bout disappeared overnight.
D mannose is supposed to help too but I haven't found it made much difference to me.

dipsticks are not reliable, look into embedded infection