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Original poster

Painful bladder

66 replies

ImAvingOops · 22/03/2022 14:44

Hi all, looking for a bit of advice on what treatments have worked for you.
I have a really achy bladder and the urge to wee constantly. Have had swab and numerous urine test and there is no uti, no bacterial infection, no STI, no thrush. Dr says bladder looks a bit sore. Have been referred to ultrasound and urology but waiting lists are long and I can't afford private cytoscopy.
So I'm going on a working theory of interstitial cystitis, which has urgency to pee, pressure, sometimes back pain. I'm so uncomfortable.

Has anyone had treatment from the dr which has helped. Been reading lots of contradictory info about what to eat or not to eat, what supplements are best.
Have bought aloe Vera capsules, magnesium capsules. Been reading about taking antihistamine and antidepressants to relax bladder and block pain signals. Any advice would be great

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Original poster
ImAvingOops · 22/03/2022 20:44

I will ask about underactive bladder too. Wish I could just see urologist as I feel like I'm just guessing while also feeling really uncomfortable for months!

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2DogsOnMySofa · 22/03/2022 21:01

Not read the whole thread but how old are you, are you menopausal, you mention HRT. The reason I ask is that I had a painful bladder and what felt like a uti, but a urine sample confirmed I didn't have one. My gp gave me oestrogen cream for vaginal atrophy (menopausal symphony) and it stopped everything within a day or two.

Original poster
ImAvingOops · 22/03/2022 21:47

I'm 48. I am already using vagifem pessaries but unfortunately they haven't stopped this, although they did seem to help initially. I am tweaking my HRT by adding in a pump of gel as well as the patches but it isn't helping so far

OP posts:

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General health
70sDuvet · 22/03/2022 23:27

@Spudina when you say you tested positive and then negative for a uti was this like concurrently?

I have bladder destuser instability and am awaiting more tests. But currently am being driven crazy by the fact I can have extremely smelly, sore wees that test positive for nitrates (we have lab grade urine testing kits at home due to DS disability)
Then an hour later I'll go again and the wee is normal and test is clear.
But later that day test is +++nitrates and symptoms are worse.
Ive tried to Google but can't seem to find the right search term which is why I was drawn to your comment.

If I do send off to the gp it comes back as needing antibiotics. I'm currently taking trimethoprim prophylactic but still have had 10 utis in the past year and an sooo fed up.

The waiting list to get back to see my urologist is crazy because of covid, plus it was generally terrible anyway.

Spudina · 24/03/2022 12:01

Like you, I had strips so used to test. They could be positive for blood, nitrates and WBC one time and then not an hour later. It was weird. One time I was over drinking (like a pint an hour, too much) due to the pain and then just stopped and the stopping made it better. When you get a kid if UTIs you get used to flushing but sometimes it made it worse.
I would also say to anyone who gets frequent UTIs a dilatation can be a life saver. My urethra was a little bit tight, I didn’t have a stenosis but the urologist did it and I didn’t get a UTI for 10 years. They can wear off but UTIs blighted my 20s and the 10 years without one was bliss.

Toddlerteaplease · 24/03/2022 12:05

No advice. But I once heard IC described as scrubbing the bladder with a Brillo pad. So you have my sympathy Op. and I hope you find a remedy.

starrynight21 · 24/03/2022 12:21

I was diagnosed with IC last year. It is not well understood / treated by doctors so many people do their own research and try various different treatments. I'm on long-term antibiotics ( Macrobid) because I was still getting uti's on top of IC ....antihistamines daily....Amitriptyline 25 mg every evening.....AZO ( bought on Amazon) highly recommended for the bladder pain when it flares up......stick to the IC diet religiously. I've got the IC Food List app on my phone and I check everything before I eat . IC isn't curable so it's a case of managing it as best you can. Best wishes to you. There are several Facebook groups which I find very good for sharing information , too.

Original poster
ImAvingOops · 24/03/2022 16:05

Thank you everyone for all the replies. Am so glad I started this thread, so I can refer back to all the fab information you have all given me.
I had an appointment through yesterday for an ultrasound, so I can rule out anything growing where it shouldn't. Have also ordered some d mannose.

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LindyLou2020 · 24/03/2022 22:06

@ImAvingOops

So, plan for tomorrow is to get some d mannose and potassium sulphate. Ring dr and discuss getting Amitriptyline and more antibiotics. Continue with loratidine tablet and the diet changes to cut out alcohol and chocolate and caffeine. Continue with pelvic wand and pelvic floor relaxing stretches. Drink more water and nothing that can irritate the bladder. Have I missed anything ?
@ImAvingOops Sorry, I've not been on MN for a few days. Don't get potassium sulphate, but potassium CITRATE x
Original poster
ImAvingOops · 25/03/2022 11:06

Thank you. I think I might have some cystitis sachets in the house already.
This morning I am rattling with supplements - taken iron (am prone to low levels), vit B, magnesium, aloe Vera capsule and vit d. Am also taking an antihistamine daily in case that helps.
Have also used the pelvic wand I bought because the women's physio said I had a tight pelvic floor and releasing the muscles might aid these symptoms.
Got d mannose on order and as suggested have joined a couple of the fb support groups.
I'm holding off on the doctor since I had my appointment through for ultrasound in early April. Will make an appointment to discuss next steps after I get the results. Will discuss Amitriptyline then.

What is the IC food list app? Have cut out caffeine, alcohol, sugar, tomatoes and anything spicy to see if it helps. Have I missed anything?

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Original poster
ImAvingOops · 25/03/2022 11:12

Am also drinking litres of mint tea to keep everything flushed out.
It's really interesting that the tests for uti are so unreliable and that I might need long term antibiotics. The lovely lady in Holland and Barrett yesterday told me to buy the urine strips from Amazon to test myself.

Also not sure if it's any help to anyone but my physio suggested taking oregano capsules to help prevent infection, so these might be good.

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starrynight21 · 25/03/2022 11:13

@ImAvingOops

Thank you. I think I might have some cystitis sachets in the house already. This morning I am rattling with supplements - taken iron (am prone to low levels), vit B, magnesium, aloe Vera capsule and vit d. Am also taking an antihistamine daily in case that helps. Have also used the pelvic wand I bought because the women's physio said I had a tight pelvic floor and releasing the muscles might aid these symptoms. Got d mannose on order and as suggested have joined a couple of the fb support groups. I'm holding off on the doctor since I had my appointment through for ultrasound in early April. Will make an appointment to discuss next steps after I get the results. Will discuss Amitriptyline then.

What is the IC food list app? Have cut out caffeine, alcohol, sugar, tomatoes and anything spicy to see if it helps. Have I missed anything?

I got the ICN Food List app - it costs a small amount but is totally worth having. It's also good to join the ICN ( Interstitial Cystitis Network) as they have heaps of good information . It's an American group but very worth joining . www.ic-network.com/
Original poster
ImAvingOops · 25/03/2022 11:14

Thank you x

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Original poster
ImAvingOops · 25/03/2022 11:18

Just had a quick glance at the ICN website. Looks fab, thank you

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lottie222 · 24/05/2022 22:59

I know this is an old thread. How are you getting on OP? I’m just following now as I’m having bladder issues too.

lottie222 · 24/05/2022 23:01

@LindyLou2020 I'm due to start instillations. How did you get on with them? X

lottie222 · 24/05/2022 23:02

@LindyLou2020 could I be cheeky an ask who your consultant is? I'm trying to find one I'm comfortable with. But I'm in London..

Babyroobs · 24/05/2022 23:05

Are you menopausal age? I have had this for two years, really painful and worse with the slightest drop of alcohol etc. I used testing sticks constantly to check for signs of infection and had numerous samples sent, all negative. A few months ago I started HRT and all the bladder symptoms have virtually ceased. It may be a coincidence but i have read of other cases where this has happened when starting HRT.

slightlypeckish · 25/05/2022 07:42

For anyone suffering with this I would suggest looking at seeing Prof lee-malones team at harley Street. They are the experts in treating long term embedded uti's. I was diagnosed with IC but since starting treatment with them I am getting my life back......just wish I have known about them sooner!

LindyLou2020 · 25/05/2022 17:07

lottie222 · 24/05/2022 23:01

@LindyLou2020 I'm due to start instillations. How did you get on with them? X

I am going to PM you x

LindyLou2020 · 25/05/2022 17:09

lottie222 · 24/05/2022 23:02

@LindyLou2020 could I be cheeky an ask who your consultant is? I'm trying to find one I'm comfortable with. But I'm in London..

I'm going to do a combined PM for both your posts.

Cocostardust · 16/11/2022 11:36

Hi OP, I know this thread is a bit dated now but I have the same thing as you and wanted to check in to see how you are and if anything helped you? Take care x

Original poster
ImAvingOops · 16/11/2022 11:50

@Cocostardust Im feeling a lot better thank you. In all honesty I'm still not 100% sure what the problem was - I still owe more than the average person but at the moment everything is manageable, urgency has significantly reduced and there's hardly any pain.
I think the pelvic wand has made a huge difference. I had an ultrasound and they also checked whether my bladder was emptying properly and there was no abnormalities.

What I'm continuing to do is to take marshmallow root and slippery elm capsules. These apparently work together to soothe an inflamed bladder and help it to repair. I have no idea whether this is true but I took them alongside a daily antihistamine, B and D vitamins and things have improved. Might be coincidence but worth a try.

I hope you manage to find something effective. Lots of people swear by a very good aloe Vera supplement. Let me know how you get on.

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Original poster
ImAvingOops · 16/11/2022 11:50

Owe? Should say wee

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Original poster
ImAvingOops · 16/11/2022 11:52

There's also a very good IC support group on Facebook with some very knowledgeable posters. I think it's USA based so not all products are available here but it's worth a look

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