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Does this sound like interstitial cystitis or something else?

(5 Posts)
seekingwaxwings Tue 11-Feb-20 10:30:37

I wake several times during the night to wee, not because my bladder is full (it's small amounts and I don't drink anything after 8pm) but because of the pain in my bladder/pelvis that is relieved by weeing. It's a horrible burning pain that's worse if I've laid on my back. It doesn't hurt or burn to wee and I don't think it's an infection as it doesn't feel like any cystitis I've had before and it doesn't bother me much during the daytime.

When I get up my bladder feels sore as if it's been irritated overnight, it gradually goes off during the day. I wee quite often but it doesn't bother me and I can hold it if I go to the cinema or something.

This has been getting worse over the last year or two. I've had several visits to the doctor with lower pelvic pain that is aggravated by standing up a long time, say if I'm cooking. Smear and internal scan were clear. This pain comes and goes in flares. I also feel bloated and swollen when I get it.

I'm 47 and recently started hrt for peri menopause and hoped that this might help my bladder issue if it was caused by vaginal atrophy as I have read, but it's early days and I haven't seen any improvement.

I would be grateful for any advice. I'm really struggling with the lack of sleep on top of a long term condition (MS) and it's hard to untangle all my symptoms and know what's causing what.

OP’s posts: |
nmg85 Tue 11-Feb-20 22:31:52

Ask to be referred to a urologist for a cystoscopy. IC is such a varied disease it's hard to tell

glitterbiscuits Tue 11-Feb-20 22:33:30

You probably need internal HRT? There are oestrogen receptors in the bladder. Look into Vagifem

seekingwaxwings Wed 12-Feb-20 09:01:48

Thank you for answering smile
When she prescribed me hrt tablets I asked if she would give me vagifem as well, and she said the tablets do the same job. But I have wondered if I should be using an internal cream too because of my bladder issues.

Sorry there's no way I would have a cystoscopy. Ugh no. Having something up my urethra is something I've dreaded for ever, it was one of my worst fears of childbirth. I'm sure it would irritate me further anyway and for what? From what I've read diet is the most effective way of treating IC anyway. I wouldn't want any of the invasive bladder installation treatments anyway, they don't seem to work often from what I've read on support groups.

I'm going to assume it's IC and start following the correct diet. I love curry and chilli and spice and my morning coffee but I would also love an undisturbed sleep so I'm going to give it a go and see.

OP’s posts: |
nmg85 Wed 12-Feb-20 09:53:17

Sorry as an IC sufferer the one thing that did help is the invasive treatments as horrible as they are in your mind. Changing my diet did minimal for me. IC is different for everyone but you need to be diagnosed to get the help which means a cystoscopy usually, yes it can irritate but can help you in the long run. The Instillations for me were 5 min of pain and then a little discomfort for a few hours but then I actually had a life which was something I didn't for many years.

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