Bladder Pain Syndrome - Anyone else out there?

[LoveBeingAMum555]

I am 51 and was diagnosed with Bladder Pain Syndrome/Interstital Cystitis around 12 years ago, have been on medication for 10 years.

The symptoms have been awful for the last six months or so, I was lucky to see a Urologist before Christmas and she suggested some practical measures such as cutting out tea and coffee, drinking more water, cotton knickers, and dealing with constipation which has also become a problem.

None of this has worked. I am due a follow up phone call after six months but it's hell at the moment. I am convinced there is a physical problem because it's worse when I have been sitting a lot, but I do an office job so this is difficult. I do try and take regular breaks.

My sleep is affected which is making me feel miserable too. Has anyone else found a solution to this or got any other suggestions? I am going to see if I can get my appointment brought forward but would love to know if anyone else has suffered with this and found something to alleviate the symptoms, other than painkillers.

Could it be perimenopause/menopause? Perhaps local Vagifem/Ovestin cream would help? It will take a few months, but it's worth trying. Have you tried amitriptyline or nortriptyline to help calm down nerves?

I suffered from this years ago - maybe milder - urethral syndrome with constant bladder pain. I found that having a very low acid diet helped immensely. No coffee, weak tea with loads of milk, no wine, no fruit juice, no tomatoes, very limited fruit. I eventually recovered and gradually reintroduced the forbidden foods. Drink water and bland milky fluids.

I had a recent bout after being pain-free for years and had to adopt the old diet. I gradually introduced normal food after I recovered in a month or so. I also had several antacid tablets a day - stuff that you chew like quickeze indigestion tablts or other brands. I actually ordered a bottle of Prelief tablets to further reduce acidity but recovered before it arrived. I can say that Ovestin has absolutely no discernibly positive effect on my bladder. I also had urethral syndrome years before menopause (in my twenties) and years afterward in my fifties so while I know Mumsnet blames almost every symptom on perimenopause or menopause I've got my doubts.

I did think stress might have had something to do with it but then I realised while I was in a stressful situation I was drinking a lot of strong coffee and I think that was the trigger for the recent attack - just too much acid.

I am under 30 and I have been diagnosed with bladder pain syndrome. I've had it pretty much solidly for over 2 years since I had a kidney infection. So I too don't think it is in anyway directly linked to menopause. No dietary changes have helped me unfortunately. I had the bladder installations (where they catheterise you and put in this gel that coats the lining of your bladder) and they didn't work for me but I've heard from others that it has really helped them so that might be something that may help. The only thing that hat has really helped was having a cystoscopy under GA and they distended my bladder basically expanded it was really therapeutic it stopped the pain for a few weeks but obviously a bit extreme. I hope you find some relief I really get it how horrific it is.

I forgot to mention that my symptoms were triggered by a couple of UTIs. My symptoms were also much much worse when I was taking low dose tetracyclines for acne on a very long term basis. There is some suggestion that long term antibiotic use can cause bladder pain. If I ever started the antibiotics again the symptoms came back with a vengeance. (I took rocutane for the acne and ditched the antibiotics.)

I still use plain soaps, no products with perfume and hypoallergenic loo paper. I tried to remove as many possible irritants as possible.

Don't know if you've checked out the pudendal nerve which causes pudendal nueralgia.

Don't know if it's relevant but might be worth a read up on, especially as the pain is worse sitting down.

Thanks all. I had repeated cystitis in my 20s and was on continuous low dose antibiotics for a while, so that's interesting.

I have read up on Pudendal Neuralgia and it doesnt sound like that's what I have, but again it's worth knowing about.

My consultant suggested Amitriptyline but I havent been prescribed that yet, I will try a low acid diet as that's something I can easily do.

It's good to hear other people's experiences, any other suggestions are welcome.

You probably have a chronic UTI. Have a look at this

cutic.co.uk/

I have for years suffered with feeling like I have a constant UTI. This was brought on following surgery and a catheter and they said nerve damage that would disappear after a year or two. . after 9 years of hell a saw a locomotive doc who said sort out constipation and it will be a game changer. I was shocked to hear this as I have IBS since a child. So I take a daily herbal supplement to go regular. ( sorry fo TMI) and omg it helps so much. Not saying it has cured it but makes such a difference to my life.

Sorry a locom doc

Have you ever had your bladder filled with water by catheter and checked for emptying? Or an internal scan of the bladder to check for infection in the bladder walk?
Sometimes bladder pain and frequent urination can be because the bladder has become use to being over active - sometimes because of an uti or just using the toilet when the bladder isn’t totally full.
There are medications that can be take to reduce the bladder spasms. This reduces pain and frequency of urination. Taken for 3-4 months.

I had all sorts of investigations and even a bladder biopsy. This is not some hidden or chronic infection. Infections are easy enough to treat with a short course of antibiotics. This is a problem with the bladder itself. I think the difference is that with a UTI it hurts to urinate but with interstitial cystitis that's the least painful bit.

So did I. I then went to Prof Malone-Lee's clinic in London after 12 years of crippling symptoms, was treated with antibiotics, and got well. As did hundreds if not thousands of other people, mainly women. There is no such thing as IC, it's an umbrella term for 'we don't understand what's wrong, you'll have to live with it'. Chronic UTI is being better understood all the time thank goodness.

A chronic UTI is not easy to treat as the bacteria form biofilms in the bladder wall meaning that antibiotics cannot easily penetrate. They require longer term higher dose antibiotics than acute UTIs

@Highfivemum That's really interesting. My consultant prescribed a sachet of Laxido every day because she said that constipation is likely to make it worse. I keep forgetting to take it but now I wonder if it might help, I do suffer with constipation and also have an Underactive Thyroid which doesnt help. Thank you for that.

I was offered other investigations, but the consultant wanted me to cut out caffeine and try other things first. I have taken Solifenicin for years which used to really help.

I have never heard about Chronic UTIs so will look into that too.

Hi. I have the same ongoing problem, did you find out what caused it and what was the treatment, did you recover fully? Thanks.

I’ve got similar symptoms but no diagnosis yet, am still waiting for a cystoscopy since January. One thing I have found helpful is cutting caffeine completely, no tea, no coffee, no chocolate (sadly, but I do still eat white chocolate) I basically drink hot water or cold water only. It’s made a huge difference after having symptoms so bad I couldn’t work earlier this year and I’m not constantly in pain now. I made the mistake of having a coffee recently and suffered for 2 days with cramps and stinging. Vagifem daily also helps me but ovestin actually made things worse. Also gave up wearing pantyliners completely and just carry a spare pair of pants with me. I couldn’t find any liners that didn’t aggravate me, even the fragrance free, bamboo, eco friendly ones.

Hi, cutting caffeine out has helped massively but I am now completely symptom free when I am not at work, so weekends and holidays are fine. The only conclusion that I can really draw from this is that it is a physical problem caused by sitting, or it's stress, but I am more convinced that it's something physical. So I don't really have a solution but it's much better than it was.

I suffer with the same. My Gp has prescribed oestrogen pessaries and said it could be due to low oestrogen levels. I am 58 so well past menopause. If I am constipated then the pain is so much worse. I have to go to urinate about 5 or 6 times a night sometimes more. During the day I am back and forth to the toilet continuously. It’s the pressure of the bladder feeling full that is so painful. A brief sensation of no pain until more urine starts to fill my bladder. A hot water bottle on the bladder area helps a bit. I have been referred to gynae/urology but waiting list is likely to be 2 to 3 years .

How are you feeling now? Do you have any improvement? x

I’m feeling pretty much the same, finally had my cystoscope a few weeks ago, am waiting for results but I suspect nothing will turn up. I now drink mainly bottled water, even boiled. It’s made a slight improvement in my symptoms but it’s expensive and the empty bottles stack up for bin day! But I think cutting tap water has helped, maybe fluoride is a trigger. Some things I can’t change. 2 days before my period I get extreme symptoms like clockwork. I eat chocolate now but I notice if I overdo it, coffee etc is still a no no. It’s very boring 😂

Hi liv, can I ask how you’re feeling now? Did you get to see the uro gynae?

Hi how are you doing now? I was just on this thread and wondering if things have eased up a little?

Hi, i have recently seen a urologist for cystoscopy (painless) and ultrasound scan of bladder and nothing was detected. Still waiting to hear from Gynaecology with regard to prolapse. What has helped immensely with the pain is removing all sugar from my diet through the keto diet, I presume that has reduced inflammation. Literally been amazing the difference but it is a tough diet and presumably it will be long term because whenever I get fed up and have a few days of carby food the pain returns.

I found out my cystitus was related to histamine intolerence and it disappeared completely when I cut out high histamine foods from my diet.