Painful bladder syndrome

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Painful bladder syndrome

Postby stodgers » Thu Oct 16, 2014 12:14 am

Hi all

I haven't been on here for so long! Not sure if anyone will even remember me?! Had a baby 15 months ago and have barely been on here since i just don't get time especially now I'm back at work! Hope everyone is ok?!

Just wondered if anyone else had this lovely condition to add to their ever growing list?
Specialist thinks it's what i have after months of problems but got to have a couple of procedures done first to confirm it.

Just wondering if anyone has it really and how they manage it?
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Re: Painful bladder syndrome

Postby moomoos » Thu Oct 16, 2014 1:00 am

I'm suffering with something at the moment.... I don't know if its what you mention? What are your symptoms please, if you don't mind me asking?
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Re: Painful bladder syndrome

Postby iblinkin » Thu Oct 16, 2014 2:52 am

Hi stodgers, interesting post and i thank you for it as i think i may be dealing with this condition as well and i should get it checked out. I looked it up online and i appear to have a lot of these symptoms if not all.

I believe that fibro has the ability to mimick other symptoms/illnesses and i won't be surprised if it is that case again. I had my galbladder and my tonsiles removed and it turns out there was nothing wrong with them and i had all the symptoms!

Thanks again and good health and happiness going your way. :-D
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Re: Painful bladder syndrome

Postby Theresa34 » Thu Oct 16, 2014 9:42 am

I have no problems with my bladder x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Painful bladder syndrome

Postby cocobella » Thu Oct 16, 2014 12:54 pm

Hi Stodgers,

**BEWARE this is a graphic post, with a bit of humour from my own perspective**

I have this diagnosis also. My urologist had said painful bladder syndrome/interstital cystitis and felt it was definitely part of my general diagnosis of the unexplained: fibro, no thyroid, parathyroid problems and raynaud's. I was diagnosed just last year, however I have had the problem for 4 years (when all my fibro etc started). It is one of the "physical" symptoms that can be seen when I have a fibro flare and I will have blood in my urine and white cells, however there is never any infection or structural abnormality.

I have managed to keep it under control for quite some time now, however a few years ago it was ruining my life and just like fibro, it flares and can come at any time!!!! Things that make mine flare.....acidic food and drink, wine and sex!!! (so pretty much things we as humans enjoy, we have to pay for). I am only 27 and it was really affecting my relationship with my ex partner as I was getting to the stage where I would no longer want to be intimate out of fear of a bladder attack. An hour or so later symptoms would begin, or I would be fine then the next day the symptoms would begin and it would be SO painful. Also, for the record we were very gentle and this made no difference. The symptoms are just like a UTI and I would also have blood in my urine. I would feel extremely uncomfortable sitting down and did have to take lots of sick days with it. I would sometimes sit on the toilet for hours as it saved having to run to the toilet every 2 minutes with urgency to then pee a raindrop.

I had 2 cystoscopies (camera up the urethra), and I will not lie, they were painful and embarrassing for me. They used no anesthetic beforehand either and afterwards I was writhing around in pain for days and peeing blood. I also had a urethral dilatation (basically making urethra wider), this made no difference whatsoever and was a waste of a general anesthetic. :sleep:

My coping strategies now.....lots of water, lots of lubrication (if you are being intimate), ibuprofen and rest. Also a few medical helpers below which have improved my quality of life greatly.

My "medical" strategies for it......Flavoxate (wow this drug made quality of life improve A LOT) - I was abroad in portugal and was given this when I had one of my severe flares. It is an antispasmodic for the bladder and WOW it was amazing. My urologist and GP now prescribe this routinely for me as it helps a lot, however they told me that it was an old drug that was rarely used in the UK anymore. I felt angry as I thought it worked and helped my symptoms considerably and they should be giving this to people who need it. My urologist has said I can get it no bother now as it works for me.

Instillagel - which is a syringe with a catheter tip and it has lidocaine/numbing gel and WOW this is another amazing drug, which I had to ASK my GP for after google searching. This is a drug that is sometimes used for inserting catheters. I can buy it online from chemist direct or my GP prescribes it. Again, the NHS never routinely give you this even though it is a better painkiller than paracetamol etc as it is local. Totally helps inflammation too. The only tricky part is the self catheter part, and I would only recommend using this at home as I do have to get into awkward positions and sometimes use a mirror :yikes: and TMI. It is also good if you have urethra or bladder pain during intimate moments, which I would use beforehand and it would help so much. I am single now so never have intimate moments anymore lol and I don't miss them as it is too much pain and hassle. :yikes:

The third "helper" I use is a drug that is not licensed in the UK, my urologist had never heard of it but he said he was happy for me to keep taking it as it really helped. It is called phenazopyridine and the brand name is "Azo standard". It is only available over the counter in the US and other countries, why we don't have it in this country is beyond me. Anyway, I ordered it from amazon and made sure it was sealed and still in date. It has been a LIFE SAFER!! It is a urinary analgesic, you take one tablet and within the hour the pain, uncomfortable, squeezing legs together shivery feeling completely goes!!! As does the urgency. The only downfall of this is the ORANGE urine. I mean "Irn bru" style urine. Again, not practical if out the house or wearing white, because it gets everywhere!!!!! There were drips all over the floor one day when I used it (and I considered myself a careful pee'er) lol and sat on the toilet like a normal female lol, yet it still managed to get on the floor and ALL over underwear. However, it is reallllllly worth it and takes that pain away instantly. Again, why it is not available here is beyond me because in the US you can buy over the counter at pharmacies and even supermarkets.

The things that never work for me: cranberry tablets, cranberry juice, cystitis relief sachets (yuck). They never ever have worked for me.

Hope this helps. Sometimes I really feel I should be blogging about this stuff. :roll: :lol:

Coco x
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Re: Painful bladder syndrome

Postby stodgers » Thu Oct 16, 2014 2:08 pm

This all started with a UTI back in Dec last year. For a couple of months i just kept getting it and kept being given antibiotics but it never went away and samples were showing no infection. I've had problems ever since!

Symptoms are pain/burning in my bladder that gets worse the fuller my bladder gets. Pain is always there but much worse when i have a full bladder. I can only hold a small amount of wee before the pain really kicks in and i get the urge to go. Basically mimics UTI symptoms.

Gynae doctor thinks it is PBS and is going to do a cytoscopy and another test where they put a catheter in. He has said he is pretty sure it is PBD and this should confirm it. He also said once confirmed he should be able to help improve symptoms but it's for life!

Not looking forward to the op and if it is too painful I'll be screaming until they numb me enough!!
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Re: Painful bladder syndrome

Postby moomoos » Thu Oct 16, 2014 3:39 pm

Hi stodgers,

I think maybe we could have much the same symptoms or very similar at least. I started with what I thought to be cystitis a month ago. I had that fizzy feeling in my bladder that comes with cystitis, like a irritation, not exactly pain. I had blood in my urine and so I thought I had better be seen straight away and was seen by out of hours service as this was in the evening. Doctor treated me for cystitis with antibiotics. She told me to take a urine sample to my doctors the next morning and ask them to send it off to the lab and also make an appt. the next week with my own doctor. So I did that.

The antibiotics I had to take twice per day so I had some in the morning and some at night. It eased off the pain in the bladder, but by night time, the time for the next dose I could feel it coming back and so I thought it wasn't really clearing it. Also with cystitis I had in the past I never had constant pain in the bladder, only when wee'ing so I thought it different and was worried. I took all the antibiotics, a weeks' worth.

Went to the appt I had made with my own GP. He was absolutely horrible to me but thats another story. But they had not sent my sample off the week before for testing because he said there was no infection found when they dipped it there. He said there was no trace of blood in the sample I gave him that day but that if I saw blood again I must go back.

I was still in pain in the bladder when I left there, but it eased off over the next day or so. Then it came back after a few days. I again saw the out of hours service because I was too scared to go back to my own doctors because of the way he treated me the first time I saw him. She said there was no traces of blood in the sample and gave me a very short course of amoxicillin and told me to go back to see my GP after that if it was no better or if i saw blood again.

I had to go back to GP as again the pain came back and there was more blood in my urine. I was really scared of all this. They said there were traces of blood in the sample and sent it off for testing. Result was no infection. So they then sent another one off which had traces of blood in it. Again there was no infection found. He then said he was sending me to Urology doctors at the hospital as he cant ignore the blood.

Since then I have been in pain in my bladder. Its a very hard to explain pain.... all I can compare it with is period pain, but worse. Constant. I get relief from it only when I wee. It gets less on resting. Its hard to walk or do much else when its bad as I feel weak in the bladder area... maybe pelvic floor muscles area too ???? It seems to get worse when I do stuff, so have had to sit around feeling scared and depressed. Cant stand my waist band around me, am constantly holding it away from me. My knickers cut in right where the pain is. Its really keeping me down as I'm scared and I find it impossible to do things I'm just in too much pain with it. The last couple of days it eased off a bit but I could still feel it in the background, irritated and weak feeling. today I can feel it more :(

Anyway, I have to go tomorro for a ultrasound scan on my kidney, then I go to the endoscopy suite and questions will be asked about my symptoms by a doctor or nurse and then a urine test will be tested and then sent to the lab for further testing and then a cystoscopy done under local anaesthetic, then I'll get the results. I'm terrified of all this. :(
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Re: Painful bladder syndrome

Postby stodgers » Thu Oct 16, 2014 4:05 pm

Yes sounds very similar although I've never had blood as far as i know. I've been quite worried too but suspected all along it was just gonna be one of those things that we have to deal with alongside fibro!
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Re: Painful bladder syndrome

Postby moomoos » Thu Oct 16, 2014 4:17 pm

When are you having your tests done stodgers?
A few people have said same to me that they have similar symptoms but no blood as far as they know. Thats what scares me the most.
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Re: Painful bladder syndrome

Postby stodgers » Thu Oct 16, 2014 4:37 pm

I don't know i have to wait for appointments to come through. Hoping not too long!

One of the symptoms can be blood in urine so try not to worry too much
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Re: Painful bladder syndrome

Postby moomoos » Thu Oct 16, 2014 5:09 pm

Thanks stodgers..... I had to search for posts on this forum that I'm going to link for you, for posts on urine in blood and there were a few on there from some time ago. It kind of put my mind at rest a little bit but still scared of my own results tomorro....

http://www.cobfoundation.org/

Hope thats of help to you if you don't already know of it. They give phone support. They also give other support but don't quite know what yet as I've only just become one of their members and I'm waiting for the pack to arrive, but over the phone she said you can have a phone buddy and that in some areas there's support groups (sadly not in my area...just my luck)

I really hope you get seen quickly. Let me know please as I am interested. Good luck and thanks xx
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Re: Painful bladder syndrome

Postby stodgers » Thu Oct 16, 2014 7:25 pm

Thanks will have a good look when i get time. Will keep u posted. Hope it goes well tomorrow x
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Re: Painful bladder syndrome

Postby moomoos » Thu Oct 16, 2014 11:03 pm

No problem. Thank you x
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Re: Painful bladder syndrome

Postby keaedmondson » Fri Oct 17, 2014 6:22 pm

How was today's appointment?
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Re: Painful bladder syndrome

Postby moomoos » Sat Oct 18, 2014 6:00 pm

Hi keaedmondson

The appointment went well thanks, all tests were clear. Relief about that, but confusion about what's causing me the painful bladder and blood in urine?????????????
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