Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Flip

1 2 3

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

OP posts:

LJH93 · 10/08/2023 10:48

Hi ImAvingOops , I know this is an older thread but did you find relief at all? Your symptoms are very similar to mine, I wee normally but that relief doesn't really subside.
Thanks!!

LadyBird1973 · 10/08/2023 13:43

@LJH93 I'm the poster you asked (have name changed). I do actually feel a lot better.

I'm still on a waiting list for urology so I'm just guessing but I think my problem might have been perimenopause related and to do with having very tight pelvic floor muscles. The womens physiotherapist taught me how to loosen the muscles with a pelvic wand, but I think the best thing has been HRT (patches and vaginal pessaries).

When I first got my symptoms I didn't realise that lower hormone levels during peri menopause could cause bladder issues to this extent.

LadyBird1973 · 10/08/2023 13:47

Just to add the HRT wasn't immediately helpful but I think over time and in conjunction with the women's physio it's made a difference.
But I am just guessing because none of the doctors I've seen so far have had conclusive answers.

Interested in this thread?

Then you might like threads about this subject:

General health

LJH93 · 10/08/2023 14:04

Thank you for getting back to me, that's really kind of you, I think I will contact a PT to have my pelvic floor checked, I just don't seem to be weeing all the time like other interstitial cystitis suffers say they are! That's interesting regarding hormones, I'm 29 but have definitely been curious about my hormones in the past, especially as ever since I first experienced symptoms at 18 I would say they spiked around my period.

LadyBird1973 · 10/08/2023 14:30

I hope you get it sorted. It's really debilitating.

Chas23 · 17/09/2023 15:46

Hi, exact same here, struggling for a long time, what was causing yours, did it go away in the end, how long did it last? Thanks.

Chas23 · 17/09/2023 22:04

Hi, same problem here, did yours resolve, if so how was it treated and how long did it take to resolve? Thanks.

Chas23 · 17/09/2023 22:07

Hi, same here, did yours resolve, if so, how was it treated? Currently waiting for cystoscopy and ct scan. Thanks.

hotcandle · 17/09/2023 22:13

Hi OP,

I have actually just created an account to respond to you. I'm a long time lurker.

I could have written this post in August 2022.

I got a UTI in August 2022. That cleared up and I was left with pain, urgency and burning. I left in 20+ samples with the doctor thinking I had an undiagnosed UTI. I was so miserable and unfortunately dipped into a slight depression with the pain and lingering burning.

Just by accident, I realised that Fexofenadine or Lortadine antihistamine completely resolved my symptoms. An appointment with a (very expensive gynaecologist) Dr Patrick Campbell here in Northern Ireland confirmed my theory that my bladder was simply irritated by an upsurge in histamine after the UTI. He says that he sees it quite often after a patient takes antibiotics for a UTI or equivalent or it can be kicked off by a change in hormones.

You don't have to try an expensive antihistamine but please trial taking one everyday and I hope that should resolve your symptoms. If not, at least you've tried a relatively cheap and safe way of trialling something that seems to work for the unfortunate of us who have suffered from a painful bladder.

Lots and lots and lots of hugs from me and please don't let this get you down. I've been there and things will get better. It's just finding out what will work.

Go easy on the IC diagnosis or paying for a cystocopy until you cross this out!

Chas23 · 18/09/2023 08:53

Hello, thank you so much for taking the time to write to me, i really appreciate it🙏🤗.
I know that we can not take antihistamines long term, how long did you have to take for yours to resolve completely? I took for 1 week and felt better but as soon as i stopped, it came back so only had temporary relief. I was worried to continue in case i damage other organs. I am wondering if this works as a treatment/cure if taken long term?
Many thanks💕🌸

hotcandle · 18/09/2023 15:32

I took a daily antihistamine for 9 months. I now don't take any. Taking them longer term allowed my bladder to heal itself without constantly flaring up.

You can take antihistamines everyday and it's actually quite safe as long as they are marked as a daily antihistamine.

I would suggest you take them long term. You will hopefully have great success if they've already worked for you before!

LadyBird1973 · 18/09/2023 15:37

I have no definite answer to what caused mine, but I did a mix of exercises from the women's physio to release tightness in pelvic floor, antihistamine, marshmallow root and slippery elm supplements, oestrogen pessaries and HRT.

ehb102 · 18/09/2023 16:05

A couple of bits from my own experience that may help.

Potassium citrate is very good at turning the water in your bladder to neutral or even alkaline. It's disgusting in liquid form but efficacious. Try it. Sodium citrate is also available that does the same job.

D-mannose is a naturally occurring sugar that hooks e.coli off the walls of the bladder. The NHS doesn't culture samples for as long as some practioners say you should, so try D-mannose for low level e.coli infections that you feel but that don't show in labs at the right time.

Hormones are an issue for me. I take thyroxine and if I have slightly too much I can UTIs, because the balance between oestrogen and progesterone is now wrong. I can also have symptoms without an infection.

Cold water would set my symptoms off. Warmth would soothe them. YMMV.

Chas23 · 19/09/2023 16:10

Hi, exact same here, struggling a lot since may, waiting for cystoscopy but cant take this anymore, did you eventually get well, what caused yours, how long has this been an issue and what was the treatment, any advice would be appreciated. Thank you.

Chas23 · 19/09/2023 16:12

Hi, same here, did you get well eventually, what caused yours and what was the treatment? I cant bear this anymore.. Thanks.

Chas23 · 12/01/2024 13:54

Hi, i had 6 courses of hyacyst instillations but they didnt work, no improvement, still in agony. They will do once a month from now on but i am hopeless. How are you now, are you healed, do you think i should continue with the instillations despite no improvements? Thanks.

Flip

1 2 3