My presenting symptom of Behcet's, the one that led to my diagnosis, was painful urination and heavily blood stained urine. I had all the usual tests with tubes and cameras, as well as investigations under GA. The urologist's report was along the lines of - nothing abnormal to see, although there is evidence of previous ulceration on the bladder wall. At that time I had never heard of Behcet's - wish that I had!
My urinary problems continued. The pain was excruciating and blood was scary but nobody knew what was causing it. I didn't have cancer and so it was put down as being 'just one of those things.' I wasn't happy with that but I didn't know what to do about it.
At another of my frequent visits to the GP I said, in a passing sort of conversational manner, 'I don't know if it's relevant but whenever my waterworks are bad the joints in my hands swell up and are really painful. I think I had in mind some sort of autoimmune disease, which was why I thought I should mention it.
My GP looked like he had a light bulb moment and asked me if I suffered from mouth ulcers. Oh yes, I said, I've always got ulcers - look, I have a mouthful now. I showed him what I now know were apthous ulcers inside my cheeks and along my gum line. And I had swollen joints and blood stained urine with urethral pain. Oh, yeah, and acne like spots on my face .
The GP remembered a fairly recent study day - although he couldn't remember the name of the condition - where ulcers and joint pain seemed to be diagnostic. He wondered if the waterworks pain, which by then I had identified as coming from the urethra, was due to ulceration.
The rest, as they say...
My most feared symptom was the urinary pain. It is excruciating and like peeing razor blades and doesn't respond very well to analgesics - Tramadol will just take the edge off it.
Eventually it was discovered that the constant ulceration had caused so much scar tissue that my urethra was tight and inflexible. I had surgery to dilate it and, for a while, it was much better. But then, because of course the ulcers continued to develop, it all came back again with a build up of even more scar tissue. Eventually I was admitted to hospital in severe urinary retention and was discharged with an indwelling catheter, which I wore for six months or so. It was undignified and I hated it. But I had no urinary pain.
Nowadays I self catheterise about four or five times a day. The catheters are tiny and discreet and as I have become more expert at passing a catheter (it's very different catheterising yourself to passing a catheter in somebody else!) it's just another fact of life - so much so, in fact, that I hadn't thought to mention it up until now! I have to take daily antibiotics to protect me from infection and they, of course, cause thrush BUT, apart from the odd painful spell, usually when I have been neglecting the catheters because I can't be bothered, I have now been free from urethral pain for almost a year. My most feared symptom has been kicked into touch. And boy it makes me feel good!
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I think it must seem to some people that some of us have everything and thus we must be hyperchondriacs. But I am sorry to say I also have just recently [2 weeks ago] been given the self catheters due to extreme retention and lack of flow.
It took around 3 years of going backwards and forwards to the gaeny clinic, before they finally accepted that I had a real problem.
My problem is intermittant and comes with severe incontinance so I have either got one or the other and sometimes both on the same day....rather confusing to them and difficult trying to catch the right moment on the urindynamics tests.
They still haven't come to the conclusion what is causing it although some comments have been towards it being connected to my neurobehcets, but not confirmed by anything.
The catheters are working well, which is a relief in more than one way....as they say
Oh, yes, Jazzy please do. You know, when this first happened to me, probably about sixish years ago now, there was great debate about whether there was any such symptom in BD.
One of the beauties of this community is the potential for gathering information from the real world of Behcet's - there are some complaints that seem virtually universal amongst us, yet they don't appear in the diagnostic criteria.
I wonder how long it will take the researchers to realise what a powerful research tool is building up here!
It is so scary to not know what is wrong! There does not seem to be a single surface area of my body which does not ulcerate or spasm. For whatever reason, when my bladder acts up I have always ended up on high dose steroids...my eyes tend to go along with my bladder.
The bladder antispasmodics for that excruciating discomfort have worked very well for the last 3 years. If I miss doses for a few days I will start to have unbearable discomfort.
My internist said it was just me and my 'smooth muscle' issues and we left it at that.
I also have behcet's but have only had ulcers in my mouth, throat and vulva and although, I take flare ups which make me feel very ill I seem to have gotten off lightly compared to others with the disease. However, I have had bladder problems for about twenty years including incontinence and urethral pain which makes me feel that I constantly need to urinate. It is only recently that I have started to research if there is a link between this and behcet's and there is research which certainly shows this. My specilalist in behcets has also confirmed that she thinks there is a connection.
I also had to have an operation to delate my urethra and it is certainly better than it was but I still get the symptoms from time to time. A further complication I have is that I had TVT or tension free vaginal tape fitted about six years ago for the incontinence but it was discovered at my last examination that the tape had eroded into my urethra and I am going for an operation to have it trimmed away next week. This has caused urine and kidney infections and I have recently been prescribed daily low doses of antibiotic. The consultant also commented on scarring that he had also observed as a result of ulcers so I am now unsure whether the problems are due to behcet's or to the TVT. I also suffer from vaginal dryness and have to take an oestrogen pessary every day and that has also been blamed for my problems.
Hearing from others with similar urinary problems is quite a revelation and there has to be a connection. This disease seems to attack so many parts of the body that it is not surprising that the bladder is involved.
Again I feel very fortunate that my problems are not as severe as yours. You seem to be dealing with it very courageously.
Well thank you for saying that, Fortunate, but it's not courage at all. If anything it is acceptance; I know that beating my breast and railing at the universe wont change anything. And don't think I haven't done this things - I sometimes feel very sorry for my OH; as I said recently, Behcet's doesn't just muck up the life of the sufferer.
Yes, this forum has been a revelation to me too; I just wish there was some way that our medics could read all these experiences so they could understand. But that might cramp our style so that would probably not be A Good Thing.
I'm becoming more and more convinced, though, that we are an ideal population for research projects. You only have to look at how many of the symptoms, which are not strongly linked to Behcet's in the medical literature, are pretty universal amongst us.
I might drop the Society a line suggesting that...
It would be such a shame to waste all this experience, and it would be such a help to new sufferers when their doctors said 'yes, that's normal with Behcet's, some people have had success using x, y and z to ease this particular symptom.'
All my life I suffered from what was classified us urine infections, which I always present with. Looking my urine on investigation quiet often no infection. I feel intense pain on trying to pass urine, I feel I want to 'bear down the nearest thing I can discribe to this pain is labour pain!
pmsl - frisky! Not laughing at your pelvic pain,darling, just at your fu@king hate behcet's days. All my days are like that - it's a ba*tar% of a disease but, hey ho, at least we're rare and not common eh?
This is like deja vu. I am a new member and I have had a very similar experience to you although they still deny that my interstitial cystitis and Hunner's Ulcers are linked to my Behcets. This has always seemed rather coincidental to me as both are auto immune and both involve ulcers. I have had three bladder and urethra distensions now and due another soon as pain is building again. I have been on opiate pain killers for years but they don't touch this pain when it flares up. As I have nerve involvement too it can be hard to tell what pain is refered from my bladder and what is just nerve pain. Really interesting to hear of others with these problems. I haven't self catherterised for long periods though and am interested to hear if this is still successful?
Yes, I continue with intermittent self catheterisation and its no exaggeration to say it turned my life around. I use coloplast speedicath compact plus, which are ridiculously tiny - around the size of an average lipstick. I use 90 a month which are delivered to my door free of charge based on a system where gp sends script direct to supplier (Charterhouse). It's a 'clean' technique rather than a sterile procedure and very easy to do. Once you've got the hang of it you can perform one-handed! I also take a daily antibiotic to guard against infection.
for me the urinary pain was my most feared symptom. None of the heavy duty pain killers would touch it and tramadol just took the edge off it for an hour or so. I even used instilagel - a local anaesthetic that you insert into the urethra using a syringe. It worked for 5 minutes, if that.
I would be lying if I said I no longer experience urethral or bladder pain because I do. However it is a rare occurrence nowadays, maybe once a month if that, it is very short lasting (a matter of a few hours maybe), and far less severe.
Additionally I no longer have to have my once regular urethral dilatation procedures because inserting the catheter keeps the channel patent.
Thanks so much for this information, I plan to take this suggestion to my Urologist at my next appointment.
I am also on long term anti biotics but I still get fairly regular infections. I also have kidney damage due to a few severe infections in the past.
I have tried bladder installations in the past too with steroids inseted directly into my bladder. At the time my bladder problems were extremely severe so this didn't help much but as they are now under more control (they have coincidently responded to the steroid treatment I have had for Behcet's) I am hoping that repeating the procedure will help more now.
I completely understand what you say about this pain being your most feared symptom. I too find the pain unbearable. At it's worst I loose control completely. I have been known to scratch my face until it bleeds an throw myself from moving vehicles. I have developed the unfortunate pain management techniques of scratching myself until I bleed when the pain becomes unbearable, as a form of distraction. I do have this under better control now than a few years ago but I still added to my scar collection the other day! This is while taking Oxycodone tablets as well as Diclofenac, Gabapentin (for the nerve pain) and Ranitidine (reduces the acidity of my urine)!
I don't know if you have the same problem, but I find that once my bladder pain builds the best wa to ease it is to empty my bladder whether I need the loo or not. The problem is that once my bladder is really painful I find it almost impossible to start going. I don't no if this is pschological as I anticipate the pain or to do with muscle function. Either way it is rather catch 22 and can lead to me taking a LONG time to go to the toilet. I think in these circumstances self cathaterisation could be a really useful tool. I don't know if this is similar to your experience.
Has anyone ever confirmed a link between your IC and you BD by the way? No one will do this for me although I think it would be more useful for my treatment to do so. I am told that both are auto immune responses so it seems coincidental that I am unlucky enough to have two unrelated auto immune conditions!
Just a quick reply Nicola as not at my 'real' computer.
You are describing my own experience exactly, including long nights spent sat on the loo in not so quiet desperation! That was the only thing to give me any relief at all. When I began the sit in, after just a couple of seconds, I would feel this intense sort of vibration run along the nerve endings of my upper body, right down to my fingertips. The sensation was so powerful it made me cry out. Once that had happened, as,long as I remained on the toilet, the pain would be bearable. Whether or not it's true, I always associated that pain with opening my empty bladder. Not one of my pain killers could ease the pain.
None of my team was prepared to link my BD with IC. It would make for a superb research paper!
I have to admit I always thought nobody else had had an experience like mine. I always it is the ulcers that link to my nerves and set off the pain when I try to open my bladder, but that is just how my mind imagines it.
I did have a consultant urologist a few years ago who was really interested in a possible link. Unfortunately he has since left and I now see someone else who views things quite differently. I'd be really interested to know if our illness progression had other things in common.
I am a Middle-aged female: I've had Behcet's Disease for 26 years and was fortunately diagnosed after only one year of recurrent symptoms. I've had nearly every symptom mentioned in the literature except blood clots. Back when I was having lots of CNS/neuro involvement, I developed neurogenic bladder which caused my bladder to empty at random times without me feeling anything. When my other CNS problems improved, so did this bladder issue.
Years later, I was sent to Urology to investigate microscopic hematuria (red blood cells) in my urine. When I was scoped by Urology, they found a rare hemangioma in my bladder (or so that's what they thought it was). No other scarring or problems were found. They told me to have it re-checked every five years or sooner if more symptoms developed.
Recently I've had several urinary tract infections that had been treated with antibiotics (I usually need higher doses for longer duration than healthy people). However, now I have a lingering discomfort in my bladder and mild urgency, despite repeat urinalysis coming back normal. I read that UTI's can trigger interstitial cystitis, or this may be a flare-up of my hemangioma. It could also be an episode of Behcet's ulcerations in my bladder. I will need another scope by Urology to figure out what's going on.
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BUT, apart from the odd painful spell, usually when I have been neglecting the catheters because I can't be bothered, I have now been free from urethral pain for almost a year. My most feared symptom has been kicked into touch. And boy it makes me feel good!
Does anyone else suffer with really bad right sided abdominal pain?
Face Pain - can anyone advise?
In desperate need of help and advice about Behcet's.
Does anyone else suffer from this?
